A Letter to Patients With Chronic Disease

Dear Patients:
You have it very hard, much harder than most people understand.  Having sat for 16 years listening to the stories, seeing the tiredness in your eyes, hearing you try to describe the indescribable, I have come to understand that I too can\’t understand what your lives are like.  How do you answer the question, \”how do you feel?\” when you\’ve forgotten what \”normal\” feels like?  How do you deal with all of the people who think you are exaggerating your pain, your emotions, your fatigue?  How do you decide when to believe them or when to trust your own body?  How do you cope with living a life that won\’t let you forget about your frailty, your limits, your mortality?

I can\’t imagine.

But I do bring something to the table that you may not know.  I do have information that you can\’t really understand because of your unique perspective, your battered world.  There is something that you need to understand that, while it won\’t undo your pain, make your fatigue go away, or lift your emotions, it will help you.  It\’s information without which you bring yourself more pain than you need suffer; it\’s a truth that is a key to getting the help you need much easier than you have in the past.  It may not seem important, but trust me, it is.

You scare doctors.

No, I am not talking about the fear of disease, pain, or death.  I am not talking about doctors being afraid of the limits of their knowledge.  I am talking about your understanding of a fact that everyone else seems to miss, a fact that many doctors hide from: we are normal, fallible people who happen to doctor for a job.  We are not special.  In fact, many of us are very insecure, wanting to feel the affirmation of people who get better, hearing the praise of those we help.  We want to cure disease, to save lives, to be the helping hand, the right person in the right place at the right time.

But chronic unsolvable disease stands square in our way.  You don\’t get better, and it makes many of us frustrated, and it makes some of us mad at you.  We don\’t want to face things we can\’t fix because it shows our limits.  We want the miraculous, and you deny us that chance.

And since this is the perspective you have when you see doctors, your view of them is quite different.  You see us getting frustrated.  You see us when we feel like giving up.  When we take care of you, we have to leave behind the illusion of control, of power over disease.  We get angry, feel insecure, and want to move on to a patient who we can fix, save, or impress.  You are the rock that proves how easily the ship can be sunk.  So your view of doctors is quite different.

Then there is the fact that you also possess something that is usually our domain: knowledge.  You know more about your disease than many of us do – most of us do.  Your MS, rheumatoid arthritis, end-stage kidney disease, Cushing\’s disease, bipolar disorder, chronic pain disorder, brittle diabetes, or disabling psychiatric disorder – your defining pain –  is something most of us don\’t regularly encounter.  It\’s something most of us try to avoid.  So you possess deep understanding of something that many doctors don\’t possess.  Even doctors who specialize in your disorder don\’t share the kind of knowledge you can only get through living with a disease.  It\’s like a parent\’s knowledge of their child versus that of a pediatrician.  They may have breadth of knowledge, but you have depth of knowledge that no doctor can possess.

So when you approach a doctor – especially one you\’ve never met before – you come with a knowledge of your disease that they don\’t have, and a knowledge of the doctor\’s limitations that few other patients have.  You see why you scare doctors?  It\’s not your fault that you do, but ignoring this fact will limit the help you can only get from them.  I know this because, just like you know your disease better than any doctor, I know what being a doctor feels like more than any patient could ever understand.  You encounter doctors intermittently (more than you wish, perhaps); I live as a doctor continuously.

So let me be so bold as to give you advice on dealing with doctors.  There are some things you can do to make things easier, and others that can sabotage any hope of a good relationship:

  1. Don\’t come on too strong – yes, you have to advocate for yourself, but remember that doctors are used to being in control.  All of the other patients come into the room with immediate respect, but your understanding has torn down the doctor-god illusion.  That\’s a good thing in the long-run, but few doctors want to be greeted with that reality from the start.  Your goal with any doctor is to build a partnership of trust that goes both ways, and coming on too strong at the start can hurt your chances of ever having that.
  2. Show respect – I say this one carefully, because there are certainly some doctors who don\’t treat patients with respect – especially ones like you with chronic disease.  These doctors should be avoided.  But most of us are not like that; we really want to help people and try to treat them well.  But we have worked very hard to earn our position; it was not bestowed by fiat or family tree.  Just as you want to be listened to, so do we.
  3. Keep your eggs in only a few baskets – find a good primary care doctor and a couple of specialists you trust.  Don\’t expect a new doctor to figure things out quickly.  It takes me years of repeated visits to really understand many of my chronic disease patients.  The best care happens when a doctor understands the patient and the patient understands the doctor.  This can only happen over time.  Heck, I struggle even seeing the chronically sick patients for other doctors in my practice.  There is something very powerful in having understanding built over time.
  4. Use the ER only when absolutely needed – Emergency room physicians will always struggle with you.  Just expect that.  Their job is to decide if you need to be hospitalized, if you need emergency treatment, or if you can go home.  They might not fix your pain, and certainly won\’t try to fully understand you.  That\’s not their job.  They went into their specialty to fix problems quickly and move on, not manage chronic disease.  The same goes for any doctor you see for a short time: they will try to get done with you as quickly as possible.
  5. Don\’t avoid doctors – one of the most frustrating things for me is when a complicated patient comes in after a long absence with a huge list of problems they want me to address.  I can\’t work that way, and I don\’t think many doctors can.  Each visit should address only a few problems at a time, otherwise things get confused and more mistakes are made.  It\’s OK to keep a list of your own problems so things don\’t get left out – I actually like getting those lists, as long as people don\’t expect me to handle all of the problems.  It helps me to prioritize with them.
  6. Don\’t put up with the jerks – unless you have no choice (in the ER, for example), you should keep looking until you find the right doctor(s) for you.  Some docs are not cut out for chronic disease, while some of us like the long-term relationship.  Don\’t feel you have to put up with docs who don\’t listen or minimize your problems.  At the minimum, you should be able to find a doctor who doesn\’t totally suck.
  7. Forgive us – Sometimes I forget about important things in my patients\’ lives.  Sometimes I don\’t know you\’ve had surgery or that your sister comes to see me as well.  Sometimes I avoid people because I don\’t want to admit my limitations.  Be patient with me – I usually know when I\’ve messed up, and if you know me well I don\’t mind being reminded.  Well, maybe I mind it a little.

You know better than anyone that we docs are just people – with all the stupidity, inconsistency, and fallibility that goes with that – who happen to doctor for a living.  I hope this helps, and I really hope you get the help you need.  It does suck that you have your problem; I just hope this perhaps decreases that suckishness a little bit.


Dr. Rob

Post Script: This post has generated a huge amount of conversation and interest (as witnessed by the large number of comments!).  I very much appreciate the dialogue it has spawned both here and across the web.  I\’ve subsequently written follow-up posts explaining my thoughts in more detail – largely in response to the comments here.  One of them discusses in more detail my own experiences as a doctor and the second talks of the importance of  knowing and being known.  Reading these will give you a better picture of my thought process and perspective on this.
Dr. Rob

563 thoughts on “A Letter to Patients With Chronic Disease”

  1. Dr. Rob … thank you. This post will require several contemplative readings; it's packed with the wisdom that only experience can cultivate.

    I've been ill for over 2.5 years, officially at least. The quick version: a flattening three-week flu after several years of chronic stressors including hellish, violent next-door neighbours, and the unique stress of recognizing that my well-being was fraying while knowing that I had to keep functioning at full tilt (any working person who has to support a family knows this). My immune and metabolic functions were whacked … major depression and PTSD diagnosed (The hellish neighbours next door had lived there for 26 months). I've been away from the working world all this time and am slowly recovering … to what states of function I can't predict.

    … That's one of the maddening things about chronic illness, yes? — that we can't predict (if the illness is not terminal) what kind of “outcome” to expect. After 2.5 years, and knowing many loved ones with permanent and sometimes varying degrees of chronic dysfunctions from illness / injury, I've taken to heart these words: “Expect nothing; anticipate anything.” That would, I imagine, be frustrating to a physician whose essential training is one of *knowledge* … clear, lucid, consistent knowledge about the human body and its parts; how they function and dysfunction; what to do to bodies, organs and systems when they need concrete repair and restoration of function.

    The knowing required for your work is intricate … so deep. I imagine you apply that standard of knowing to every patient you encounter … and when one arrives whose symptoms you can't figure out, you're in uncharted territory …

    There are universals in every story … and perhaps you understand more of a patient's experience than you think. We all live in these marvelous and ultimately frail ships of flesh; we all eventually run aground and stay there. You as a physician may remember when you, too, didn't know what “normal” meant; remember your internship and residency? How many hours were you expected to stay awake, sharp and lucid for a shift? I (who am not a doctor) have heard that student-physicians can be required to work for 36 hours straight … more than once from a physician.

    So you will know, too, the frenzy that chronic stress and relentless expectation of “normal” functioning creates. You know, too, your own experience of

    The more I think of it, it's likely that many of our chronic, long-plateauing diseases are simply gradual breakdowns in functionality that occur over our lifetime. No one escapes stress — nothing that lives escapes it. Just to exist, to stay alive, is stress. Every life is both battered and buttressed … to wildly varying degrees … and in some bodies and brains, there's too much stress for too long, and down we go.

    The only definitive diagnoses that my situation acquired, interestingly, were psychiatric ones. Metabolic, immune and hematologic weirdnesses that have been occurring seem to have no name. I once was a psychotherapist, and my practice with clients was always to start with the basics. Bodily health. Self-care starts with the house we truly live in … and that includes, most of all, those among us who directly offer care to others. I was provided, when in practice, with daily opportunities for waking myself up and keeping myself awake …

    … Living with a large constellation of symptoms over a long time certainly does sharpen one's awareness of what I've come to call “Mr. D.” (= death.) I've lost one parent, both of my most intimate friends, all my grandparents, eight beloved cats, many colleagues, other relatives and friends … and nearly my own life on one or two occasions. There's a side of me that has become quietly curious about death and very open to our universal human fascination with what happens when our mortal coil unravels.

    In another life, I might have been a physician. My own doctor knows that, and he deeply respects my knowledge (as I do his). We have 20 years behind us now, and I trust him as far as I can trust anyone I love. He is a gem — a kind and moderate man in all ways.

    I'll write more, dear physician … Speaking of self-care, it's time to sleep … 🙂

    Thank you for your writing … I'm going to share your blog with my doctor.

    More soon and I look forward to some conversation with you.

  2. Wow. This is beautiful. Thank you, Dr. Rob, for both the empathy and the advice. And most of all for the confirmation that there ARE doctors out there who grok how hard this all is for us patients.

  3. VERY well written-& with an honesty & vulnerability that few doctors are willing to show. Thank you.

  4. Lindy Oechslin

    What a honest and powerful blog. Dr. Rob – this is the reason I am an absolute fan of yours and the only blog I read religiously.

  5. Very insightful, Dr. Rob. I need to monitor my emotions when I see a new patient with chronic illness to see how I react. I hadn't thought about it in this way before.

  6. I just read this post, and from someone that has been dealing with chronic illness for +/- 10 years, it meant a lot. It also helped me though as a medical student. I will be starting my second year (again- after taking time to get my health in order) in about a month and so far I have found very little information from our professors on dealing with chronic illness. It seems that most of what we learn is the basics of whatever disease it is we are focusing on, the different treatment options, the prognosis etc. While very little of our education is on dealing with the whole patient- or more appropriately the patient experience. Most of my classmates can list risk factors, signs and symptoms, and treatments for limitless diseases, however I feel as though we learn very little about how the patient experiences these.

    After leaving two PCP's for lack of something I can only describe as bed side manner to a chronic patient, and accidentally finding my current PCP, I was very happy to hear that there are doctors out there that do recognize that chronic patients are very different- even if the disease is “simple”, the experience and the expectations are anything but. I hope more doctors read this blog and realize that while as chronic patients our expectations are high, if that trust is made between the doctor/chronic patient, the chronic illness experience becomes much less stressful and easier to deal with.

  7. Nice post. I would also add to your list that patients with chronic or unusual illnesses need to get all copies of their labwork and other important data points of their illness. There is nothing worse than having the doctor who knew you, understood you and treated you well leave town or retire, leaving you to start all over.

    This has happened to me (doctor moved out of state) and even staying in the same network (that has all the lab tests at their fingertips documenting my issues) it was still a nightmare because none of the doctors I have now knew me then. So my recent flare up was completely mismanaged.


  8. Rob – this is excellent advice and I will blog about it. You've given all patients (not just those with chronic diseases) an excellent platform from which to build a great relationship with a physician.

    However — in all fairness, I think it's important to point out what is probably the biggest reason patients with chronic diseases get the short shrift from way too many of your colleagues to begin with – the reason they do come on too strong or have unrealistic expectations from the good guys, like you. That is, that chronic disease patients are too time consuming. There are no simple appointments or quick prescriptions or orders. And, since there aren't billing codes that fairly compensate physicians for taking care of these time-consuming patients, it becomes a big problem for all patients – and even worse for those with chronic diseases.

    It's no wonder they are angry and come on too strong! It's a miracle they can find anyone at all who will care for them.

    Just as you have provided an excellent description of your point of view as the physician, please try to stand in their shoes as a practical matter, too. Not just the fact that they are sick, perhaps debilitated and very frustrated. But also the fact that they have been beaten with the short end of the medical care stick for way too long. Part of the suckishness is that they have been put in this position, needing your advice above, to begin with.

    Trisha Torrey
    Every Patient's Advocate

  9. I actually like it when patients come with an organized list of meds, labs, tests, consultants, and (especially) concerns. Again, don't come on strong with this, but the bottom line is that complicated patients confuse doctors at times, so it's nice to have things organized and know we are not missing things. Communication between docs is terrible, so you often have to serve as the conduit.

    You might want to go to Google Health or MS Health Vault and keep your medical stuff organized there.

  10. I am very glad to get props from docs on this. I was pretty sure the patient crowd would understand and agree, but this was honestly a new way to think about it. I do react to people and am better off knowing how I react. Thanks.

  11. Wow. Thanks much for your insight. It's hard to believe you have all this stuff and yet haven't even gotten to 50! That makes us about the same age.

  12. Agree…that's why I wanted your opinion on this. We tend to have this back-and-forth relationship between docs and patients and spend too much time looking at one of the other. I tried to balance the reasonable nature of the frustration chronically ill people feel with the way their appropriate emotions can sabotage their care. I don't think most people have thought about this much, and I am glad I did. It will help me when I approach my chronic patients.

  13. Hi, Rob. I love your post because of it's honesty and respect.

    I think Trisha hit the nail on the head, so won't reiterate what she just said. Recently, someone asked a question on the Cushings Help message boards. He asked, “Why so difficult to find a good endocrinologist?”

    Here is our concensus, and I apologize if I step on any toes, but it is how we see it:

    1.Most endos are stuck on the research prior to the '80's. They don't know about episodic/cyclic/non-“florid” Cushing's even when they say they do. There is some excellent research being done outside of the U.S. with these, and by a few in the U.S (you know who they are). Not many endos bother to notice/read it because they assume Cushing's is rare and never find out it really isn't, but it's just rarely diagnosed.
    2.Endos who think they are experts on Cushing's aren't. I think it has a lot to do with the med school they attend and where they do their residency. Those who study under certain endos at certain med schools tend to stay in the same rut mentioned in number 1.
    3.50% of endos graduated in the bottom of their class.
    4.45% of endos who were in the other half of their class slept through the class on Cushing's OR went to the med schools mentioned in #2.
    5.5% of endos can actually think for themselves and will read research.
    6.Less than 1% of those endos mentioned in #5 actually listen to their patients and treat them as equals in the diagnosis process. This is called participatory medicine and it's the future. It needs to start now.
    7.It takes too much time and effort to diagnose and treat a Cushing's patient, which is money out of their pockets compared to treating diabetes and thyroid issues. In our present healthcare system, this is a huge problem.
    8.Obesity tends to blind folks. They can't see around it. In the same venue, non-obese folks aren't big enough to have Cushing's. Pre-conceived notions due to #1 and #2 are a lot of the problem.
    9.The NIH aren't the “all that” some folks think they are when it comes to research.

    After that was posted, it was aptly amended yet again with this:

    “How things work with Cushings (and this was from the FIRST endo I saw) is that in each area there are one, maybe two Cushing's experts and one, maybe two surgeons. That's it. All of the local endos will bounce their patients off of the one or two local experts before referring (since they don't handle alot of Cushing's patients and of course, everyone is going to be sensitive not to look bad to the other folks in this small circle.

    What I took from this is if you see local endo 1 and do some testing and then inexplicably get booted, either (i) your local endo knows the big hooha and knows you wont fit the mould and doesn't want look dumb or (ii) the local endo has already consulted with big hooha and big hooha has said to go away. If you then go to local endo number 2, and local endo 2 does some tests and calls up big hooha, big hooha will say — I've already heard about this person — go away!!! Unaware that this is happening, cushie goes to local endo number 3. Same kiss off. And maybe somewhere along the way, big hooha decides to call in the big guns and calls NIH. And I think we can all figure out that NIH can't diagnose its way out of a paper bag. See Koo. See me. See Sowens. See Sapakasha, see Alexsmom. Etc. Etc. So we can all figure out what happens then. At some point poor cushie starts thinking all endos all stupid.

    Not necessarily. It's just a disproportionate number of the big hoohas who are stupid. If we could figure out a way to convince them or send them to an early retirement, it would make our lives better.

    So, take away is: see an endo who isn't going to feel the need to consult with a big hooha who doesn't do diagnoses. “

    We would love your input on this.

    Four (4) weeks ago I had a bilateral adrenalectomy to “cure” my Cushing's Disease. I would not be here without my primary care physician (PCP). She was the first to say “endocrine” to me 5 years ago after 20+ years of seeking help from doctors. She has done all the legwork to prepare me for my surgeries to try to cure Cushing's through the years, and she has admitted multiple times to ignorance about many things.

    My PCP has also gone to bat for me when supposed “specialists” were not such. She fought for me, read many journal articles I supplied, and turned beet red when she said something that was totally wrong. Yet she persevered and when she moved her practice, I moved with her. She is not perfect. She forgets things. She doesn't know things. She is rushed and busy sometimes. But, I truly believe she cares and is doing her very best for me. Most of all, she listens to me and she treats me with respect. She does not talk down to me like I'm stupid, nor does she feel threatened (that I know of, anyway) when I share my knowlegde with her. She gives me my records and lab results, is working to open a patient portal at her new office, and is trying hard to work in a participatory way as a doctor. She is a rare gem, and it took me a very long time to find her. I dread the day she quits practicing or moves. No one knows me like she does.

    Thank you for sharing this. God bless you.

  14. Amen Robin to everything you have said about endos. Aside from reproductive endos, I have been scarily underwhelmed by most endos 'practicing medicines'. Reproductive endocrinology, so far, has been where I find endos with excellent critical thinking/clinical skills. Unfortunately, now that I'm not trying to get pregnant, they won't see me.


  15. I try not to overwhelm anyone, but you know what? _I'm_ overwhelmed so I doubt I can save my doctors at this point. And I am rapidly becoming _that_ patient, the one with a three ring binder that makes everyone's eyes roll back in their head and their fingers twitch, convulsively reaching for caffeine that isn't there.

    As for storing documents, I have my hubby scan them at work and email them to me in gmail. I have a medical label I then apply so I can find everything when I need it.


  16. Wow, great perspective for a patient. I'm a frustrated patient that thankfully has a great PCP. I think he and I have managed so long because he has admitted to me that most of my issues are well beyond his scope of expertise. Realizing your doctor is human is more than half the battle from a chronically ill patient. Thank you Dr. Rob for the reminder!

  17. Speaking as the daughter of a mother who has lived with two debilitating chronic diseases for more than twenty years….

    One of the most difficult things about being chronically ill is living at the mercy of medical professionals. To constantly have to beg, cajole, humor and frankly butt kiss — all of the time — just to stay alive — just to get a refill, a test ordered, whatever. Think about what it does to the patient to deal with the “medical ego” — it's demeaning — and over the long haul, the feeling of powerlessness leads to depression. And avoiding doctors unless absolutely necessary. Because it is always a negative experience of having to put yourself down in order to make the doctor feel good so you can get what you need. It erodes trust. It erodes a working relationship. And what it means is that the maybe marginal improvements that might make a difference don't even get explored because, frankly, one would rather retain that smidge of dignity over any benefit that there might be.

    To treat the chonically ill, you need to think like a chronically ill person. It's not the whole enchilada of good health or nothing, it's making what you have just a little bit better at a time. It's using the mobility scooter to reclaim going shopping and getting out of the house. Its tweaking the meds to reduce the bad anxiety or figuring out how to build a bit more muscle strength. If you insist on health or the highway, sure, chronically ill people are going to be frustrating. If you look for success on the margins, that's an entirely different story.

  18. Let me amend by adding something else that was said about my quote from the CH boards:

    “I suspect [the part that says] half of endocrinologists are in the bottom half of the their class…is a joke.

    Endocrinology has historically not been a very competitive fellowship — there are more fellowships than fellows. So, historically if someone really wanted to be, say, a cardiologist (an historically higher paying and competitive specialty), and did not get a fellowship match in the match program for fellows, because, for example, his or her grades weren't the best or his or her recommendations weren't very strong, he or she could probably find an endo program that would take him/her. So, the overall credentials of endos are probably not as strong as for specialties like cardiology or radiology. “

  19. Thank you for this – I forget sometimes that my illness is just as hard for a doctor to deal with as it is for me to live with, and I sometimes expect too much. Especially, thank you for the bit about the ER – I just had to deal with a hospitalization over the 4th, and it was a nightmare, but your words have helped me make a little more sense of the experience.

  20. I so identify with this post.

    I'm tired of begging.

    I'm tired of being more well read than my doctors and having to hide that knowledge in order to schmooze the latest specialist who is going to do jack squat for me. I essentially play dumb to get what I need.

    It's gotten to where I can sometimes tell what bias they have and what research they've read or haven't read.

    And I definitely avoid going to the doctor whenever possible even though I do have some very good ones on my side.

    I have health care battle fatigue.


  21. Wow, Dr. Rob. You totally made me cry. Your honesty is refreshing, in fact, kind of disabling. It shoots down the notion that any of us sick folk may have that doctors are jerks! (But I know YOU'RE not a jerk!)

    In fact, I've never been one of those chronic illness patients who wanders around thinking doctors are a-holes. It's been painfully clear that most of the docs I've seen were really just trying to deal with a tough situation. I mean, it's taken me more than a decade to really understand how my multiple illnesses affect my body; why would a new doctor be able to see that?

    But yea, on the other hand, a new doctor could give me fresh perspective, even if she is kind of clueless about my specifics. I think the best patient-doctor relationships grow over time and, as you mentioned, multiple visits.

    Bottom line is, I love reading what you have to say. I'm going to recommend my ChronicBabes read it, too. In fact, what do you think about me reprinting it on my site, with full attribution of course? 🙂

  22. Excellent article! It's refreshing when I find a physician who is able to communicate about his/her abilities and limitations in hope of improving patient care.

    I recently met with my attorney who was representing me for my SSD case. He repeatedly questioned why I had stayed with the same Family Physician even though he had misdiagnosed me for many, many years. I told him it was a decision that was not made quickly or lightly.

    I explained that I had been his patient since his first day of private practice, 18 yrs ago. Although he had mistaken my increasing fatigue and weight gain to depression, he repeatedly showed he was willing to learn once I was diagnosed as being pan-hypopituitary. There were some ruff apts and times I drove home repeating…..”you are SO fired”! LOL!! But there was a turning point when he did allot of reading about my condition and got onboard with my endo.

    Our relationship has not only improved my health and his doctoring abilities, but improved the health of many of his other patients. Frankly, that makes it all worthwhile in my book. I've had to study so much about endocrinology that I'm fairly certain I could pass the final exam. 🙂 But I live to help others with pituitary problems and hopefully shorten their journey to getting a correct diagnosis and the best treatment.

    I have always “laid-low” with my knowledge about my conditions and it has ALWAYS worked to my advantage. It's simply not possible to be an “expert” about everything, even if you're a specialist. The speed of information is simply too great. However, I will admit to “leading the witness” in many instances.

    One of the brightest doctors I've seen, who diagnosed me with Interstitial Cystitis, told me, “Doctors are specialists, but the patients with the illness are the real experts. Go online and find a community of patients with this condition to really learn the ins & outs of how to conquer this.”

    ……….a doctor with this kind of wisdom…….is priceless!

    Although I have also subscribed to the philosophy of “failing fast” when it comes to finding a good doctor. I've sought help from many doctors who demonstrated their unwillingness to learn and partner with me. I know they are doing me a favor by showing me we are not a “love match”. That helps me move on quicker to find someone who's a better fit for me.


  23. Where to begin. SUCH a great post.

    First, Rob, this is exemplary, almost a definitive manifesto for the relationship aspect of participatory medicine. I'm going to suggest that our editors consider it for publication as an essay in the Journal of Participatory Medicine.

    In my keynote at the ICSI Colloquium in May I made some similar points: Get over our false sense of certainty; get over our denial that healthcare is risky (to deal powerfully with our failure rates); get over the perfection thing: it causes lawsuits, stress, and ruined careers.

    Really exemplary. Thanks.

  24. Thank you for this post. It's so refreshing to hear from a doctor who understands the dilemma that we chronically ill people are in. I wish all doctors would be this honest about their limitations and took the time to try and understand the frustrations we face.

    Toni Bernhard

  25. One of my persistent messages I try to push is this: there are two PEOPLE in the exam room, both of whom should recognize the humanity of the other. I'd be happy for you to publish it, and I am very glad you appreciated it.

  26. Powerful post Dr Rob!

    I really appreciate the inside view that you give us.

    Only once did I stay with a Dr I didn't connect with. It was like we were both just missing the mark ..personality wise. But he was an excellent diagnostician. I think my *best* dr/pt relationships are the ones where I feel connected. And you are correct in that it takes years ..not over night. It is such a reassuring thing to know that your docs know you ..your hx and understand quirks and all that comes up ..know your case and even go to bat for you ..because they *know* …you … and really care. They don't just blow you off. They listen ..really listen and because of their stellar care a mutual relationship of trust and respect grows ..you both benefit.

    And I feel safer under their care.

  27. Dr Rob, First time reading your blog and I couldn't read this post quick enough. I am another chronic illness mess and I finally did find a good Endo and GP that believe everything I tell them. “The list of complaints” is something I have done for years…you always forget something important when you are sitting in the doctors office. I have a fairly rare disease, Secondary Addison's Disease that took forever to diagnose. I was so sick but kept getting thrown back to my Gastro Guy because I also have Crohn's. He put me in the hospital and figured me out in one day. Finding an endo who knew anything about adrenal/pituitary disease was impossible, and none of the endos I saw wanted to deal with me. I finally found a wonderful Endo who primarily deals with diabetes patients. She enjoyed the challenge and has been terrific. She has learned, right along with me, all about my disease and l i s t e n s so intently, writes everything down and is constantly doing reasearch for me. I interviewed three different internists (very uncomfortable) before I decided on one. The one I choose thought that it was cool that I came in just to talk to him and not because I was sick. We talked about all my problems and he agreed to take me on…he calls me “his Tough Broad”. Loved this post, loved all the comments, and I will be back for more!

  28. Thanks Doc, for putting into words what all of us have felt at one time or another. Medicine is a lot of fun, but at times it's very hard as well.

  29. anonymous patient

    Hi Dr. Rob,

    I love reading your blog! I think sometimes patients forget that doctors are people too. We've built up such a barrier between doctor and patient that often times we forget that basic fact. I'm not sure how we as a society got to this place but it's not a good one to be in. I actually had one doctor tell me once that I frustrated the hell out of him because he knew no matter what he did I'd probably never be completely healthy (I'm a myasthenia gravis patient). That shocked me, made me angry, made me think and challenged me. I think I actually expected him to “fix” me and there isn't a fix. There's management, there's being as healthy as possible but there isn't a fix. It took that physician saying that to me for me to accept my limitations. Ultimately I chose to find another doctor, but he really did me a favor. I expected too much from medicine, and now that my expectations are more realistic I'm happier, and I think my doctors are too. I'm not fighting them any more. And now that I spend less time being angry that I have trouble picking up my two year old or annoyed at my freaking eyelid refusing to open I spend more time just being me. Chronic illness does suck. But it sucks less now. And if more people would take the time to thoughtfully consider both the doctor and patient perspective as you have in this post maybe it could suck even less.

  30. Excellent post!
    I had an excellent relationship with an internist– until I got sick and even with countless tests over a 9 month time frame, nothing was manifesting clearly… She basically accused my of being a hypochondriac and crazy, without saying it directly. At the time, the mailman at my office was spreading rumors that I had cancer because of my dramatic weight loss. The best specialist I saw during this time was able to say to me, “something clearly is going on, it might be something autoimmune and that sometimes takes a long time to show itself clearly.” Being able to say “I don't know,” rather than blame the patient is important. The worst doc involved at the time, misread a biopsy as benign.

    Two years later, I was diagnosed with lymphoma and told that all the earlier symptoms were caused by that, and that the biopsy had been misread. I wrote my internist from that time and she acknowledged that she had taken her frustration out on me. When I called the specialist who I hadn't seen in two years to tell him what I had– he called me every week just to check in and see how I was doing on chemotherapy- this guy was a mensch. Both docs were rated as “best ofs” in the city but, one clearly was better in that he was able listen to me, recognize that I was not making anything up and acknowledge the limitations of medicine.

    If you want to know frustration…try having bizarre symptoms, not being able to eat, weird pains, knowing something is really really wrong and having your doctor treat you like a crazy person. If you've had a patient who's come to you for years just for check ups and never even come in for a cold or flu and they suddenly start banging down your door begging you to figure out whats wrong–well, something usually is wrong.

  31. Another chronic patient here – been sick since I was in my teens, I'm 35 now so it's more than half my life I've been sick, and have been bedridden for the last 10 years. Doctors just see the size of my file and their hearts sink.

    Your post made me cry, truly. I am blessed with recently finding a PCP (actually, we call them GPs down here in Australia – family doctors) who has a chronic illness herself. Although our diagnoses are completely different and there is almost no overlap in symptoms, the empathy she has for my situation is utterly priceless to me. When I come to her with a set of symptoms that the textbooks say never happen together, her response is to research it rather than to assume that I am malingering/lying/mis-reporting or misunderstanding my own body. When I tell her I am tired of fighting and struggling she knows, at a bone-deep level, what I mean. This is empathy that I have never had from the most understanding healthy doctor and I value it above any level of medical knowledge (luckily she's also a good doctor!).

    Today an ultrasound confirmed that I have an inguinal hernia. I'm a 35 year old female, for heavens' sake! I came home from the hospital (after waiting 2 1/2 hours for a taxi that could take my powerchair) wishing that the universe would give me a break and I opened my mail and found a reference to your post and came here and read it and cried.

    Thank you for knowing you don't understand.

    Thank you for admitting the fear and insecurity that patients like me cause.

    Thank you for helping me to have more tools to connect with doctors without inadvertently exacerbating that fear or insecurity.

    Thank you for TRYING, most of all. Thank you for caring about us “heart sink” patients.

    Ricky Buchanan. http://notdoneliving.net/openletter/options

  32. Well done! Small piece of advice for patients with chronic illnesses who are meeting a new physician. Whenever possible, bring your prior medical records with you. This will make your initial visit much more worthwhile. In my practice, we sometimes have to wait through a few office visits, until we receive the requested records, which sometimes never arrive. We ask for the colonoscopy report and we receive your Pap smear history. I also suggest maintaining your own medical record file at home, the master copy. Yes, EMR is coming, but paper charts are still the way of the medical world for most physicians' offices.

  33. “It’s like a parent’s knowledge of their child versus that of a pediatrician.”

    So as the parent of a child with a chronic disease, I guess I've got two strikes against me?

  34. MKirshMD, I totally take your point about doctors needing specific past test results and I do maintain my own “master record” at home… after 20 years of complex and mostly-incorrectly diagnosed illness and disability I have not one but two ring binders (about 4 inches tall each) both fairly full with the copied records of past tests and other useful things like the full list of operations I've had (why and where and who and when) and referral letters from doctors (the useful ones with actual information) and such. I suspect many of us long term severely ill/disabled patients are in the same boat.

    Obviously, bringing two large ring binders to a first appointment is almost 100% guaranteed to get a chronically ill patient written off as having Munchausen's or being a first class hypochondriac, even if you don't pull them out until the doctor asks if you have a specific result.

    I suspect even the executive summary of the medical records would be more than a few inches tall for most of us – I have to summarize to near uselessness to get it on 3-4 sheets of paper and even that is too much for most Drs to read in a “long” 15 minute consult.

    My compromise at the moment is to lug along the two ring-binders, safely hidden in my bag, and a separate envelope – the one I pull out – with a copy of the referral letter (I'm sure you know how often it doesn't make it onto the doctor's desk at the right moment) and any test results that I anticipate the doctor will want. But I'm not a trained professional and I can't read doctor's minds (it'd be really handy…) so I'm often asked for something that's in those ring binders and not in my envelope. Do you have any advice about avoiding the situation where the doctor sees the sheer amount of paperwork you have filed and mentally adds you to their “crazy patient” list?

  35. Thanx for giving the doctor perspective on patients with chronic diseases. Folks with chronic illness are often jaded by and cyncial about the health care system and its providers. Your letter provides insight into how you feel/deal with chronically ill patients. Your advice on how to approach the medical profession is interesting; unfortunately, chronically ill/chronic pain patients often have to deal with jerks among the primary care physicans, ER doctors, and specialists. For me, the specialists have been the biggest jerks! Like any situation, it can be hard to treat someone with respect if they don't reciprocate that curtesy!

    I am a chronic pain survivor (which means I am surviving with daily pain) since 1998, but it took years to find a caring, empathetic, understanding compassionate primary care physican, and purely by accident too! She believes me that it hurts (although I don't have any outward physical signs except for grimaces and frowns), listens to my research and input. We are both active in my treatment. She has made all the difference in the world.

  36. Thank you for this post- I am new to chronic illness, and this helps clarify some of the stereotypes I hear (both of doctors and of chronic patients). As I struggle with finding long-term care, I will keep your points in mind.

  37. Agreeing with @pissedoffpatient:

    You know what? I have a strong personality in every aspect of my life, because if I didn't, I'D GO TO BED AND NEVER GET UP AGAIN. That's who I am, and telling me to hide it may be a sadly realistic statement of the way things are, but it's useless advice for me because it's freaking impossible.

    And also, I don't honestly know exactly what it means. I don't swear or yell at people I've just met, especially not if I'm hurting a lot. But you know what? Doctors need to understand that having worked hard to get where they are is worthy of respect but does not make them special. I worked hard to get where I am. It may not impress you that I only have a master's degree and am somewhat underemployed but I did it with two mental illnesses and chronic pain, and I am the only employee in my office who understands how a lot of things run. I work as a secretary to an internationally recognised research nephrologist and type his papers and field his calls. I have a Medscape account, and I read journals. I have to for my job.

    Having a doctor ten years younger than me in another department start treating me as though I know nothing gets my back up, particularly when it's over organisational stuff like phone vs email–does he really think I can work here and not know the limitations of email security? But I have ADHD and am on pain killers. If it's not in my calendar, it won't happen. Also, having someone use their ability to deny my prescriptions in any disagreement is a sign that I can't trust them, because they are basically willing to use their ability to cut my IQ in half and force me to suffer disabling pain in order to win an argument.

    Doctors need to understand that their gatekeeping authority puts their relationship with patients who need drugs to survive into an inherently abusive power structure. Nobody can ever fully trust someone who has the power to turn them into a shuffling zombie for real unless they are willing to act as though they don't have that power and would never use it if they did. There's nothing worse than a new shrink who wants to review all my meds and maybe tinker with them when they've been working for years, or a doctor who is overly concerned about whether I am a drug seeker or not. Of course I seek drugs, they enable me to function. I am not going to five different doctors to stockpile, but I cannot hold down a job and live alone without them.

  38. Hopefully you have docs smart enough to value your knowledge and perspective. If not, then you are definitely down in the count. It is harder for parents in that they have less control and a bigger feeling of powerlessness. Pediatricians generally get this better than the average doc, but there is also a more paternalistic nature of care that goes from pediatrics. I live in both worlds, so hopefully the bad in both cancels out.

  39. Even EMR doesn't help with communication. I know first-hand. I want my patients to have as much information as possible and to know what information means.

  40. Thanks for posting this, I agree wholeheartedly, esp with #6.

    I do, however, take exception with one comment

    “How do you answer the question, “how do you feel?” when you’ve forgotten what “normal” feels like?”

    What is normal for me just happens to include being diabetic for 40 years, so my answer would always take that into account.

  41. I tried not to imply that you shouldn't be angry or frustrated. The purpose of the post was simply to state that the person on the other side of your frustration is a normal human as well, with normal human responses. My kids make me want to scream at them at times, but doing so has never been fruitful in my relationship with them. Yes, you are at the mercy of doctors (although I wouldn't call it an abusive power structure), and if you have a bad relationship with those docs, you are screwed. That's why I think engaging a relationship with them is a good idea. It's not easy, it's not always going to work, it will sometimes fail miserably and make you insanely frustrated, but it is a more fruitful path than being oblivious to the emotions of the person you are facing.

    Does that make sense? I am not trying to say you are wrong or haven't been wronged. I am just saying that it is what it is, and the best approach is to find a good doc and build a positive relationship with them. Good docs do exist.

  42. Thanks so much for writing this it is good to hear all laid out in front of you. It can be so overwhelming, especially as I am just starting to navigate in the world of health care on my own having entered the adult world and promptly developed a chronic illness. It is so hard to explain, why one looks so healthy and is still in the barely over 21 club and yet has a list of allergies a mile long, high cholesterol, and asthma. I've been lucky and gotten some pretty awesome doctors so it hasn't been so bad. Again thanks so much!!

  43. “Hopefully you have docs smart enough to value your knowledge and perspective. ” Thank you, Dr. Rob, and yes, for the most part, we do. I agree about pediatricians – we once tried seeing an adult rheum, and it was uncomfortably obvious he was not used to dealing with moms. He kept one hand on the doorknob and one on the Kleenex the entire visit.

  44. Thanks for the post Dr. Rob. The first thing that comes to mind is that I don't think you are representative of the average doctor. And, most definitely not similar to the sub-specialist who is, umm, oh-so-special.

    I think Patient Guide/Trisha pointed out a huge factor of difficulty with the chronically ill patient. The time consuming factor. No matter how organized and prepared we try to be, the fact that a typical appointment needs to cover: (1) bureaucratic issues (third-party forms, referral problems, etc), (2) attempts to integrate conflicting information from specialists, and then (3) cover actual medical condition issues, well…

    I've been dealing with a difficult-to-diagnose issue for getting close to three years now. In the middle of this all, I had a craniotomy for a brain tumor that was an incidental finding as well as another more minor surgery. While it certainly was traumatic, it was easier to deal with than my chronic illness. It was concrete, didn't require the coordination of multiple specialists (ha! does that ever happen?), and I was treated decently, with respect.

    I was pondering your #3. As a patient the most difficult part of this all is psychologically profiling the doc to figure out what they consider beneficial to our interaction. What is respect to them? Well, for sure I dumb myself *way* down. However, the records conundrum and the write-up is difficult. One doc praises your historical prowess and for bringing in the binder, the next rolls their eyes. Another appreciates a bulleted summary of the last couple years events, yet another contains her annoyance, barely. And, what tone should I take when the doctor's office doesn't follow through on a promised deliverable after repeated requests from me, other docs, and my case manager?

    My condition, that I went from climbing mountains to being very feeble, is discouraging but I can deal. My case and my dealings with the medical/disability establishment, is exponentially beyond discouraging and requires the bigger bootstraps of the two.

    Thanks for the post, I likely need to employ #1.


  45. Dr. Rob, every post you write just confirms why I have such enormous respect and affection for you. You are such a decent man. To me, that says it all, no matter what profession you are in.

    As Dr. Mandrola said in his comment, this is an example of how the Internet can really be beneficial. Your post can help doctors be more empathetic and help us patients feel validated.

    Like others remarked, you made me cry. “How do you answer the question, “how do you feel?” when you’ve forgotten what “normal” feels like?” You know about my struggle with MS. Normal before is a rapidly fading memory. Normal now is a wheelchair, a smorgasbord of prescription drugs and chronic pain.

    I am one of the lucky ones, though, regarding my health care providers. From my PCP to my neurologist to my orthopedist (there is that pesky broken shoulder thing, too) to the oncology office where I receive my Tysabri infusions, all respect my autonomy and, as a bonus, are kind, good people. But then again, I vote with my feet and do not tolerate condescension or bullies. Although it is awfully hard to be your own advocate when you feel like something the cat threw up on the carpet.

    Chronic illness, like old age, is no place for sissies.

  46. I've been playing the chronic pain game for nearly 7 yrs after an auto accident. The first doctor I went to misdiagnosed the problem. When I went back and complained about not getting better a few weeks later, I was written off as a whiner. That label follows from one doc to another as you are referred. Finally, I gave up talking about the problem. It's still there, I'm in pain every day from it, but if no one believes you what are you supposed to do? I did my best to be polite and respectful, but all they saw was someone that they believed was exaggerating – after all that's what the chart said. When I go in for a physical now, I just say I'm fine because what else can I say? That the first doctor I saw was terrible (in my case)? How do you get the doctor to see past the label? After all, who are you as physicians inclined to believe – your fellow MD or the whiny malingerer?
    Thank you, Dr. Rob, for writing about this from your perspective. I do avoid doctors, but so far, when I've had to go it's for a specific problem; otherwise I just pretend I'm fine and hope some day it'll be so.

  47. As a woman in her early 40's who has been diagnosed with 2 different cancers, fibromyalgia and even a psuedo-tumor cerebri, I too often have watched my new doc's eyes widen as they see my chronic and/or life-threatening illnesses with no rhyme or reason, no family history, etc… I have become very sensitive to my doctor's initial response to my records, and it makes me so tired, I just want to give up trying to find help. Your post will help me to be a better patient and to keep things in perspective. I forget that I am just working with another human being, the good and the bad. For the Docs trying to approach patients with chronic issues or folks with mysterious issues, please be careful about saying “But you're too young…”, or “That shouldn't feel like that”, “Why would that be painful?” and please really try to be careful of your facial expressions, I can see when you are thinking “Oh my gaaawwdddd” and then they say with shock, “You've had that TOO?!” So I will try to be balanced and not expect too much if you will cut me some slack and realize that I am far more overwhelmed than you are. You get to go to the next room and next patient, I get to live with this knowledge and yes, I DO know my body better than you so please listen. I knew I had cancer both times, as I was sent home because I was too young to investigate. Don't write everything off to the chronic Fibromyalgia, symptoms still need to be investigated.

  48. Overflowing Brain (Katie)


    I'm married to a doctor (well, he's a 2nd year resident in pediatrics going into pediatric neurology, so he's mostly just someone else's errand boy) and have a chronic illness (headaches every day for almost a year, related to Chiari Malformation and intracranial hypotension, but unrelated to my serious parentheses addiction) and we have talked over and over about my illness and the way it makes him feel and why it's so difficult for him. And despite his best efforts, he hasn't been able to put good words to it, to why it often renders him silent and frustrated. And this blog post? makes it all make SO much sense.

    Thank you. For writing this, for enlightening me. From saving my husband hours or arguing and other conversations he desperately wants to avoid.

  49. Dr. Rob,

    Thank you so very much for writing this. I have MS and was lucky to find a neurologist who cares for me.

    I agree we need to be careful with the knowledge base we develop as we live the life of a sick person. I have found it important to let a new doctor/specialist bring his/her ideas to the table first before I bring in my ideas based upon my personal experience and the mass amounts of research I have done. I recently had to see a specialist and made sure I respected his input first. When he asked me what I had expected him to do instead, I then began to bring up the research I was aware of and what I thought of it. (I actually handed him research papers) At each point he brought up, I brought up another research paper, and we discussed that.

    That was probably the best conversation I had with a new doctor/specialist because I actually let him do his thing before I did mine.

    Thank you again for your post.

  50. Thank you. I have a chronic illness and I tend to avoid my doctor, only going to see him for scripts and when I'm so sick I have no choice. I like my doctor and I have no complaints about the care he gives me but I feel so guilty for taking up his time, for being unable to pay his full fee and for being unable to articulate my problems in a way that can let him help me as much as I would like to be helped. I hate it when he gives me advice I don't want to follow even when, from his point of view, it is totally sensible advice. So I only go to see him when I'm too desperate to be anything but difficult. I'm to see him again this coming week, having already cancelled and rebooked the appointment several times. Hopefully, this time, you have given me the courage to give him a chance to help me – thank you for that.

  51. Dr Rob, You are the best, your patients know that you care and I for one appreciate it very much.

  52. Dr.Rob
    I am in Limboland and have lost ALL faith in the medical world and Doctors.They are rude impatient judgemental and all to quick to squeeze a patient in a unproven box because the patient doesn't fit in theirs.

    If I continue to search for answers and trust Doctors I will lose my mind on paper.This isn't the case in reality but I have given up.I will most probably die someday because I refuse to go to a Doctor for chest pains for fear of being put in a box and will be killed by the heart attack that i was scared to get checked.But that is the risk I am taking now,because its not worth my sanity.If what ever I have is progressive then I will know sooner or later myself what I have,will I go to the Doctor? Not until I have enough that CANNOT be ignored.Will I trust Doctors NO.

    It is though refreshing to read that there are Doctors that have given some thought into how their patients feel and what they go through.You have indeed my respect for admitting your fallibilities and fears I am though disappointed that this in the end is yet again another one of those advice list's as to how to make the Doctors lives even easier and so that we continue to play by the Doctors rules.
    I am frustrated that Patients are ever learning how to deal with their Doctors and the Doctors seemingly make no efforts to understand or to make the Doctors visit easier on the patient.

    Now you have made your inventory it is your duty to change what you can and make amends ;o)

    Refreshing and a small light, but still not enough for the patient like me that has been let down on all sides by the medical profession and has been forced to go it alone!

    Another couple of posts like this though Dr.Rob and you'll be the first Doctor I start liking!


    Patient Clare

  53. Thank you! I'm lucky to have a wonderful PCP who will actually share her frustration with me, which I think really helps. She's strong enough to be able to a) admit that she doesn't know what to do with me and send me off to an allergist and respirologist and b) admit that she's every bit as frustrated as I am with my breathing problems that sprang up out of the blue eighteen months ago (cliff's notes version: a series of URIs put my mild asthma back into high gear eighteen months ago, and I haven't had a symptom-free day since – though I have been able to more than double my lung function, so I am much much better than before… and much better than the severe asthma I had as a child). I think it really helps our relationship to have her be willing to let me know when she's frustrated, and she's never taken it out on me. I had to go through six doctors to find her,, and I'm glad I was persistent enough to keep looking for a doctor I liked. My allergist is pretty good, too, and I don't yet have a good feel for my pulmonologist.

    Something I found works for me (because I honestly have forgotten what “normal” breathing feels like) is to answer symptomatically, “Well, my cough is better, and I'm able to exercise pretty well. My peak flows have been green zone for x days, and I'm only using my inhaler between zero and two times a day which is actually really good for me.” or whatever. Right now, it would be, “I'm coughing quite a bit, and I'm not able exercise well. Walking up stairs leaves me really short of breath, and I have to stop after one flight. My chest is quite tight. My eyes are itchy and sinuses are congested, so I think this might be allergy-related. My peak flows are consistently yellow to low green, and I need my inhaler four to six times a day on average. I've already stepped up to yellow zone plan, and it doesn't seem to be working. I think I might need steroids.” My doctor likes it when I answer like that since when I'm flaring, I tend to lose perspective on how bad my breathing is and even when I'm too short of breath to complete a sentence, I've answered, “How are you feeling?” with “Okay.” Doctors that don't know me and don't know that I'm a difficult asthmatic with a list of environmental allergies as long as my arm and eczema tend to either think I'm a whiner when I answer like that or that I have an anxiety problem (which I don't – been checked out by a clinical psychologist to rule that out).

    One thing I've noticed with the ER, and why I avoid it at all costs, is that if you come in for a chronic condition and you have an non-classical presentation (such as, in my case, cough-variant asthma – I don't wheeze unless I have bronchitis or pneumonia), and you're at all anxious, they will treat you as an anxiety attack, regardless of whether or not you have numbers or symptoms that can't be explained by anxiety (low oxygen saturation, for example). I think it's because they train for the cut-and-dry obvious case, as opposed to the person who may have a relatively rare presentation of the disorder. This is why I'm very aggressive in managing my asthma: the last thing I want is to be hypoxic and anxious due to continuous coughing that my rescue inhaler just will not touch and have the ER staff sit me in a psych room for a half hour so I can “calm down” from my “anxiety attack” before they decide to believe the oxygen monitor and treat me. It's happened before. And I understand why it happens (they're emergency specialists, not lung specialists, after all – likely, the vast majority anxious twentysomethings who come in with SOB and no wheeze are just having an anxiety attack, and that's enough to ignore my cough and treat the “horse” even if it's not necessarily the right “horse” for the situation), but that doesn't mean I like it.

    So, anyway, thanks. You're one of the good ones, and you remind me of my PCP, who's also one of the good ones.

  54. Yes, I know the feeling from the physician's perspective when the patient arrives carrying all three volumes of his Encyclopedicus Historicalis Medicus, that details that last 14 years of in-patient and out-patient care administered by a dozen specialists from 4 different cities. What is your expectation of the initial visit? I presume that you do not expect the physician to cancel his day so he or she can burrow into the binders. Realize that it may take a few visits until the physician has a grasp on your history. Years of medical work can not be cleanly funneled into a single visit. I like the idea of an exec summary to give the physician a high altitude view. Then, he or she can look deeper into Binderland to explore subjects of interest and immediate relevance. You sound as if you are advocating well for yourself.

  55. Well said. It's wonderful to hear the other side and it makes me respect your profession even more than I did before!

  56. I was directed to this site by a post on the “CCSVI in MS” Facebook page (thank you, Rose!), so it's my first visit here. Am I impressed! Very helpful perspective, Dr. Rob, as I (and many others) have been trying to work with doctors in incorporating a recent historic discovery in the MS world into their approach with this disease. Simply put, some are open to new ideas, others are not. Sad, but true. Many thanks.

    P.S. to sufferers of chronic illness: Seriously consider an appointment with a good naturopathic doctor (N.D.), who will typically meet with you for an hour or more on your first visit, view you holistically, and listen better than any M.D. I've ever conferred with. Different approach can = different results, which is what you're looking for. (No, I'm not a naturopath, but I'd be thrilled if my daughter became an ND vs. an MD – truly no offense to Dr. Rob.)

  57. That's a really good point about expectations – it made me think. I hope that my expectations are fairly reasonable – if it's a specialist I'm seeing for a particular issue I want them to have at least the list of relevant diagnoses (removed from binder as described above, so not a problem) so that they can ask about the relevant general stuff and then address the issue. I'll mention to them that I have more specifics if they need it, but not any more than that.

    If it's a potential new primary doctor I tend to have pre-screened them through friends with chronic illness which helps a lot. I'll bring up the binder by making jokes about having it and see how they respond. Since a sense of humour is pretty much necessary to cope with severely chronically ill patients as a primary doctor that one does double duty 🙂 And if a primary doctor can't cope with a complexly chronically ill patient keeping their own copy of records they aren't the doc for me, so that's OK.

    From my perspective, the problem usually comes when the specialist says they'll need a specific test result that I have but have left in the binder. I want them not to run away screaming or excessively negatively categorise me (in a psychology-of-me sense) just because I *possess* the binder. This is the biggest problem I find. Unlike new primary doctors, I see new specialists often and because of the way the medical system runs here I have little choice about which specialists I see (or rather, choosing another one often involves a 3-12 month wait for an initial appointment so it's not usually feasible). So if a specialist gets an unduly negative opinion of me it's something I just have to deal with.

    I've just acquired another semi-acute problem, so I'll need to be seeing another new specialist soon, possibly two of them, so practical advice would be very welcome.

  58. A truly wonderful letter. Thank you so much for shedding some light on how office visits feel from the other side of the white coat. I've definitely been guilty of a couple of the mistakes on your list; missing appointments and showing up with an overwhelming list. It's just so hard, I've been sick a long time and I'm tired…just tired of the endless sameness of it all. The same appointment, over and over and over; it's exhausting.

    I have a doctor who is a really great guy…at least, that is what everyone tells me. No, that's unfair. He is a good man. But from the very beginning he told me that ME/CFS is frustrating for doctor's to treat because there's no cure and no definitive course of treatment. A statement, as honest as it was difficult to hear. I've been seeing him for three years now. Just before our last appointment, I brought him a smidgen of the research I'd done and asked for some of the tests recommended.

    When we met at our next appointment he told me that he'd spoken with the clinic's medical director and that even if he ordered some of the tests (the one's designed to measure immune system issues) he wouldn't know how to read them. And that he thought the clinic wasn't able to do any more for me than they were doing. Okay. What am I supposed to do with that?

    At any rate, I know I've been guilty of just not going in for appointments. I have transportation issues and it hardly seems worth wrangling my cognitive issues to get transport and the ME/CFS hit I take to sit for an hour in a waiting room, to spend 3 minutes with a doctor who can't help me. So I'm…I'm completely frustrated.

  59. Dear Dr. Rob,
    your article is phantastic and so very much to the point – as is everything I read on your site since I discovered it an hour ago…
    Would you PLEASE give me permission to translate it into German and repost it on my website for ME/CFS patients? It's a purely voluntary page, have a look at it: http://www.cfs-aktuell.de
    Of course I will add – as I always do – the source and the web address with the original article…
    Would it be possible for you to just give me a short feedback on info@cfs-aktuell.de ? Thank you so much.

  60. Feel free to re-post it. No problem at all. I'm glad you like it and would be honored on having this post acquiring an umlaut.

  61. There's no way to get the care you need if you only see the doc for 3 minutes. He's probably right about the specialized testing being impossible for him to interpret. Perhaps you need to look for someone with a little more training in CFS, I'm not sure.

  62. I agree 100% with the symptom-centered approach. Don't rely on generalizations like “I feel lousy,” or “I've gotten worse” to get your point across. Be as specific as possible as to how you feel lousy or worse. That's not always possible, but it is more fruitful when you d.

  63. I am not alone. Really. Most docs aren't selfish SOB's wanting to make more money. The entire point of this post, however, was that the chronically sick patient sees the worst side of doctors and that in and of itself gets in the way with their care. If you find someone you find MIGHT be a good doc, then approach him/her gently and patiently. Building a therapeutic relationship is your best chance to get good care.

  64. Your reply though, insinuates that I haven't tried to do that.The problem is that is exactly what I did and was lead so badly off course.And I then tried again and again.I Know of course that you are not alone and there are Good Doctors but like I said I am worried that my sanity on paper could be written off before I find him or her.I will wait if I have MS and clinic tests have indicated that I might just have it,then it will show and there really is very little that can be done for MS anyway and I am not a believer in the DMD again another money maker for the pharmaceuticals buts that's another topic!All my experiences have been in Germany so costs haven't been an issue for me,I am well insured and on that front I have no complaints. Maybe I should move to America the land of opportunities!! Bugger I am sick there goes my chance of a green card!! You really are a very nice Guy,don't you want to open up a practice in Germany`?

  65. Dear Dr. Rob,
    thank you so much!! I'll post it on http://www.cfs-aktuell.de/august10_1.htm within the next hour, provided, my main PC will not break down again. And of course you may copy it and repost the German version on your website so that you have Umlauts on your website too! ;-))
    I'm sure that the German ME/CFS community will very much like your “musings”. People with ME/CFS have particularly severe problems with their physicians and will be very happy to have some recommendations at hand how to minimize their suckishness, as you call it.
    Well, most of us have not only a far better understanding of their condition but also a lot more of scientific up-to-date knowledge on their disease. And it is so true that we scare away many doctors with a) our understanding of our disease simply by having to live in that battered body, b) by having a disease which is chronic, unsolvable and very complex, and c) by having a lot more knowledge on the scientific level.
    So your “musings” might help people to develop more consideration of their poor doctors!
    Thanks again,

  66. I use a two page format for my daughter with chronic illness when we see a new provider. The first page is a brief summary of the reason for the visit and a bare bones timeline showing major events & diagnoses. The second page is a meds list including current and past medications. Both get updated before they are used. Other information goes in a folder & is only brought out if needed.

    If nothing else, it helps keep me focused & from forgetting things I think are important.

  67. For me, Dr. Rob, this comment places a lot of responsibility on the patient. A patient who doesn't understand the medical bureaucracy nor has the authority to effectively challenge it. It's like asking a victim to take one more kick in the teeth.

    So while we're being 'nice' 'gentle' and 'good' patients we're not getting medication or care that we need. Been there done that. It doesn't work. Nice and gentle means I suffer while the doctor continues to feel secure in their work quality when they are actually making things worse.

    The solution isn't for chronically ill patients to behave themselves, it's for medicine to get their act together. I would love to see a post from you, someone who understands how medicine works, how doctors can be better care providers to people with chronic illnesses.


  68. It has been a treat to read not only your letter, but all of the comments. As someone who has come to terms with my chronic illness (CVID – an rare immune insufficiency that most people, including docs, have no clue about) I feel so relieved to have come through sixty years of infections, being called lots of inaccurate names, to finally be officially diagnosed six years ago. Finally I have proper treatment, or management. So there is hope, for all the patients who are still “in the process.” Don't give up!

    I often mention to a new doctor about the “credibility gap.” I tell them I promise to tell them the truth (as I have heard doctors believe patients lie), and I hope they will also tell me their truths. Copies of tests are documentation that improve your credibility as patients. I knew I had pseudomonas for a long time, but it wasn't until I had that lab report that I was believed.

    I am sorry that doctors are scared. So are patients. We are scared that you might be yet another doctor who cannot bridge the “credibility gap,” who won't believe that what I say is true. I really don't care if you don't care about me, if you will still use your great brain to try to help me. I am older now, and I hope I am not entering the “throw away” period, where it doesn't matter how I am because I am old in your eyes. Now I have finally figured out how to pay attention and put the pieces together to suggest to the doctor why I am feeling so weak (the strong antibiotics for a year destroyed the good gut bacteria and I now might have a malabsorption issue), I know better how to help myself. (Lots of probiotics! And juicing!) And yet I do appreciate more expertise than I, the most academically ignorant one in the equation, can bring to the conference. That's why I am here.

    Since I have read your letter, I have a question, Doctor: Now I am getting a new PCP. My dilemma: Do I really check all the relevant blanks on that intake form? Will that scare the doctor too much? How much honesty can a doctor take at first meeting? I pretty much have things under control, so I don't feel that scared or ill….. I am just tired of trying to find someone sturdy, like my great doc (who had my same illness) of six years ago. (She had to leave private practice because her insurance would not cover the medicine she needed – what a loss!) It seems like such a balancing act, playing ones had so close to the chest, when the logical thing from my perspective would be to put it all out on the table. It is difficult for me to be phoney. But if the doctor is scared, as you say, does the patient have to play that game? How can I take care of thee, when I only just learned to take care of me?

  69. Thank you for an interesting perspective from the “other” side. As a 20 year chronic pain patient who has had multiple procedures, surgeries, etc, I can tell you it is a relief to know that some of the resistance we encounter isn't lack of belief in our condition but frustration due to the inability to “cure” us.
    I can handle that. But the one thing that many of my doctors do that makes me want to scream is to say “well you look good, so things can't be too bad” and “it obvious your not just laying around in bed coz you look…”. Makes me want to scream every time! Because I do have so much pain, that excursion to the doctor 60 miles away, may be the only one I make that week. I want to go out looking as decent as I can manage because it makes me feel human, less defective. And if by looking good they are referring to the fact that I dropped 17 pounds in 4 months after a spinal fusion, I think they are nuts! I was 5'8″ and 135#, I am now 118#. I look good? I look like I need a steak and a baked potato with all the trimmings!

  70. Don't lie, but make a summary of your own that gives the main points. Most importantly is that you are clear with sending home the message: “I pretty much have things under control, so I don't feel that scared or ill….. I am just tired of trying to find someone sturdy.” That will reassure them that you are not wanting them to save you from this disease they know nothing about or want to use them as a “prescription dictation service.” The latter is from my personal experience with people where they come in and try to play a superior role in the relationship by telling me to prescribe a bunch of things I am not sure of. Both of these things make docs flinch.

    Emphasize that you are stable and just need to start building a relationship. Make sure they hear the fact that your expectation is to take time learning each other. It sounds like you have a good relationship template off of which to build new ones.

  71. I shared this link with my online “family” of fellow chronic migraineurs, and we have all appreciated it so much. It feels good to know there are doctors who understand our perspective even if we haven't found someone in our own search who does. It makes us hopeful there is someone out there for all of us who are looking for the right doctor.

  72. Piali Mukherjee

    Dr Rob, This is the best writing i have read in recent past… a chronic lung patient, being taken care of by an excellent doctor, i can relate to what you say. I am grateful taht i have a doctor who cares for his patients the best way, respects them n gives the best always. Your honest confession about us is really touching. Few docs can empathize really with our pain..thankfully my doc can. I wish you the very best in your pracice and may you be able to help your patients the way they need….not just with medicines but with compassion n respect.May this letter reach the doctors and patients alike and help build the trusted bond , taht is essential prescription of a healing relationship:)

  73. As a PS to my earlier comment: I blog about chronic pain, trying to put a positive spin on what is a negative experience. I hope you don't mind: I put a link to your “letter to patients with chronic illness” and to the site where I learned of your letter in my latest blog. I think folks with chronic pain will benefit from the chance to see things from the perspective of the person in the white coat, as well as from the interesting and insightful comments your post has generated.

    Your missive matches nicely with an earlier blog of mine where I quoted from a letter written from the perspective of the person with a chronic illness written to help others understand what it's like to live with daily pain; in that case from fibromyalgia.

    I've subscribed to the comments, and am always pleased to see a message that another person has posted their reaction.

    Thanx again for writting this letter/blog post!

  74. Wow. Thank you so much for this. My mom has Stage IVb Esophageal Cancer and a link to this was posted on the listserv I subscribe to. She's always had a “thing” with her onc and I always suspected it was because we came on so strong in the beginning (my mom and sister-in-law are nurses and it had taken 3 months for my mom to be correctly diagnosed).

    Katie Krumpter

  75. I also know someone who just coughs with asthma, and doesn't wheeze until they're opening up. And I've had many arguments with triage over it. What has helped, and might help you, is to carry a letter from your specialist – saying what kind of asthma you have, and urging prompt treatment. ER docs often listen better to another doctor than they do the patient/family. When really REALLY desperate, quoting nathional standards for asthma care as requiring prompt treatment sometimes works, but doesn't make friends.

    ER does seem one of the places a chronically ill person most feels like there is a sort of adversarial relationship, sadly.

  76. Person with ME/CFS

    Hi Dr Rob,
    your post made me cry. I am not sure why. Before I start having a go… I will agree that you are right about a lot of things and a lot of this hit home.
    Luckily I have found a brilliant GP who I have only seen on 2 occassions but already started having a good “bond” with them which means everything right now as I am more ill by the day.
    I have now been diagnosed with depression, NEAD (non-epileptic seizures, Epilepsy, Myalgic Encephalophathy/CFS, PTSD, Dyslexia, mild learning difficulties, vision problems, mild Sleep Apnoea, serious migraine disorder and aquired hemiplegia type symptoms and it is only finally now, I have reached the point where we try different treatments to treat the symptoms rather than going mental trying to find the cause.
    To be honest, regarding ME/CFS I am being given different answers and told I have it then i dont (between my new and old GP both working in the same practice) and it is so frustrating to be able to live normally. As a chronically ill patient for the past 5 years (only 22) it has become frustrating especially with my consultant neurologist and other GP's past where they have basically given up on me.
    I am sorry to say this but GP's are not paid to give up on you… however much they may hate seeing me.
    It's even more frustrating at the A&E/ER where you want to get emergency care to take you out of the severe pain and they just send you home with paracetomol because they have labelled you “unfixable”.
    You sound like an amazing doctor who does care but maybe has forgotten the shoes of the patient. I only wish I had got my current GP 5 years ago when I first became ill as I suspect a lot of why I am severely ill is because Doctors didn't listen, brushed me off and potentially left me with no medication for seizures that have now done damaged to my eyesight and neurological functions.
    As with doctors, it can get extremely frustrating for someone like me. Endless tests and tests with inconclusive results or bad news… being shipped between hospital departments and visiting the GP/PCP every week with a new problem! Some don't bother to listen, other's say it's all psychological and then others have actually cried. I have been physically manhandled by hospital staff and paramedics being told I am making a fuss when I have another spate of spasms or have seizures…. so excuse me that I don't exactly “ok, fine lets build a loving bond for a while before you treat me properly”…
    When someone like me has no “conclusive” answers and certain symptoms having no formal diagnosis on paper it makes every bit of difference to any other medical practitioner and the way they approach you.
    It is great that you like having the long term bond with a patient to get to know them… in some ways that is good, in other ways it makes me feel like you want to take things slowly to see how I react to meds or tests like a guinea pig. All well and good that doctors want to learn from us, but not at the expense that we don't get the proper treatment.
    Doctors are not paid to be our friends and have lovely bonding sessions… they are paid by whoever to treat a patient with compassion and deal with their problem and get to the route of it. Find it and treat it… whether that means curing something with anti-biotics or treating the symptoms of someone who can't be cured.

    I am so frustrated by the system but hope you don't mind that if I ever do step into your office and break your lovely desk and computer that you don't blame me… just blame the doctors who didn't bother listening to me, physically abusing me or plain ignoring me and not taking the time to get to know how it is for me for a change. I now scream in pain most days, I cry everyday and had to fight to simply get some time off work. Whilst I am fighting the benefits system to get money for my disability and income support and housing benefits to help pay for my home and food and filling out countless forms, trying to kiss the ass of different governmental authorities and having to jump through everyones hoops… I don't want a friend when I get to the doctors… I want to get treated!
    p.s. i am sorry i sounded so rude but there was no nice words to get my point across…

  77. Dear Dr. Rob,
    What an amazing post you wrote, it brought me to tears because I can tell that you “get it.” I am a patient with a couple of neurological diseases and after many trial and errors I have a good health care team in place. I am proud to say that I have followed your advice most of time and I think that is how I ended up with such an awesome medical team.

    Thank you for taking the time to write this, I think many people will find a lot of wisdom in your words.

  78. You bring up some good points, Dr. Rob, and I thank you for writing this letter. I've posted it on the fibromyalgia community at LiveJournal, and I look forward to seeing the reactions it generates. The comments you've received certainly cover a wide range of physician and patient experience.

    One other thing to consider when confronted with an “aggressive” chronic pain patient: most of us see several doctors, and are also involved with several agencies on whom we are dependent for disability income, foodstamps, housing, or other care. Each one of those relationships is adversarial, and requires an enormous amount of proof to show we are not malingering, in order to receive benefits. Pile that on top of our very real chronic illness and, frankly, most of us are plumb tuckered out, and tired of the attitude. We continue to kiss everyone's behind to get what we need, but it never, ever, feels good.

    Also, I'd like to point out that in just two years' time, I racked up over 50 medical appointments, between PCP, specialists (2), ER visits (2), physician-ordered tests, and physical therapy. That is, basically, an appointment every two weeks; figure in commensurate co-pays and lab fees, as well. I never made an appointment that wasn't ordered by a physician. Honestly, I was exhausted. I really related to “Pissedoffpatient”'s avowed “health care battle fatigue.” Now, I go see my rheumatologist every six months; everyone else, only if my ass is falling off. No more “every 6 weeks” appointments for me — I'm on strike!

    Thanks again for this. Looks like it's engendering some very worthwhile and overdue discussions.

    Now I'm off to read your article about “Ten Dumb Things About Medicare.” I'm sure I'll agree!

  79. I am not defending the human foibles and frailty of doctors, I am just talking about it. You shouldn't have to coddle doctors' egos, but they are what they are. Much of the frustration about doctors stems from the fact that they act like people but don't want others to know.

    I will say that there should be one person you check-in with regularly, be it every month, every 3 months, or yearly (depending on your number of problems and how often things change). The “dumping” of a ton of problems at less frequent visits is a HUGE problem and it does make the care worse.

    The last think I want to do, however, is to make it seem like docs have it bad. No, I am just talking about the psychology of doctors and how you can deal with it for your own advantage.

  80. Dr. Rob,

    This post just flipped the light bulb on above my head.

    For years, I tried to get help for a chronic condition, eventually I gave up as I continued to get more and more frustrated with the professionals that I met. I tried protocol upon protocol, I would do exactly what they said, but I was not getting any better.

    One day, I met a physician that “got it.” It was him that I saw every two weeks for almost 3 years until he accepted a well-deserved opportunity across the country. This post provided an illumination for me. The reason that this physician was able to help me was that I allowed him to be a person and make mistakes, but he also allowed himself to be vulnerable with his predictions and advice in my presence.

    That made for a mighty fine doctor-patient relationship. It was a true partnership. One I do hope to recreate someday with a new physician.

  81. It breaks my hear to hear this as it rings so near to my own experiences. After 5 years of trying to get multiple doctors to figure out what was wrong with me, I went to a chiropractor with a new credit and crying “said there is a $10,000 limit on this card, just please help me”. 90 minutes and a few x-rays later she came out of her office with a piece of paper explaining all about fibromyalgia. She told me to take this to my doctor and tell him that you want to be screened for it.
    I went to a new PCP, he looked at her note, at my chart and said “well any idiot could have figured that out!” I told him that his colleagues I had seen at (nation's largest HMO) were idiots then! He agreed. Go to someone, tell them exactly what is going on, has been going on and bring a pain journal with a few weeks worth of entries so they have something to work with but please, please do not suffer because you haven't found your Dr Rob or Dr Tomic. This is YOUR life, take it back and live it!

  82. Nightshade1972

    “Health care battle fatigue” is a really good way to describe what I feel a great deal of the time. My current neurologist thinks I need a shrink because he forced me to sit up rapidly from a prone position, even though he (should) know(s) that I have slit ventricles. When I sat up rapidly *without* closing my eyes, as he instructed, the pain was so severe I burst into tears and blurted out several things I never would have said if I'd been able to think coherently at that moment. So he induces pain in me to satisfy his scientific curiosity, and I get told I need a shrink. If he could live with what I live with for just one day, I think he'd realize it's not “all in my head”–at least not in the psychiatric sense!

  83. Nightshade1972

    Your last paragraph fit me to a T. In late '97/early '98 I began having a period that wouldn't stop. I bled heavily and continuously every day for five weeks. The bleeding stopped for a week, then started up again. When the second period began, I tried to find a gyno I could get to by bus–I have hydrocephalus and a seizure disorder, and can't drive. The local gyno refused to see me on an emergency basis. When I came in several weeks later, still bleeding heavily, he actually got angry with me! “How do you expect me to examine you when you're bleeding?” Um, why do you think I'm here?

    To make a long story short, it took me another six years to find a gyno who did a thorough physical exam and ordered an intravaginal ultrasound. What she thought was a “small cyst” that was effectively crushing my left ovary turned out to be a benign tumor–which she didn't find out until she was in the OR performing my hysterectomy.

    I'd always had weird periods. In hindsight, I can clearly see there were many contributing factors. But it would have been nice if I could have saved myself twenty years of suffering by finding a doctor sooner who actually listened fully to my complaints and took them all seriously. Too many doctors out there act like those of us with chronic illnesses or bizarre symptoms are just there to screw up their otherwise perfectly-timed-down-to-the-minute day.

  84. Nightshade1972

    I usually do this too. Another good way to keep medical tests organized is to get CDROM copies of everything. The hospital I go to gives them out literally within minutes of the conclusion of a particular test. Now that exam rooms have computer terminals, sometimes it's easier to hand a doctor the CDROM than it is to try to explain what's going on.

  85. Nightshade1972

    The question about “normalcy” should be turned around. What's “normal” for me is, I'm sure, vastly different than the “normal” a perfectly healthy person feels. I have an extremely high tolerance for pain, so I always mention that to a new doctor when they want me to “tell them what it feels like on a scale of one to ten”. I have to explain that, for me, zero is still “no pain”, but ten means “feeling like my head is a giant water balloon about to explode, and my pain is so severe I almost can't speak”. So if I tell you that my pain is between a five and a seven, that would probably equal a “normal” person's eleven or twelve. Since I've never known what “normal” is, the best I can do is describe what's “normal” for me, and hope my doctor understands that quantifier.

  86. Nightshade1972

    Bless your husband for his choice of residency. I have hydrocephalus. At the Hydrocephalus Association conventions (http://www.hydroassoc.org), which I've been attending every two years since '98 (the most recent one was a month or so ago, in Cleveland), they warn both the parents and the patients themselves that it's frequently a lot easier for a pediatric neurosurgeon/neurologist to follow the hydrocephalic child into adulthood. Too many adult neurologists/neurosurgeons simply aren't interested in treating hydrocephalic patients. They're “too complicated”. They're not the kind of patient where you can do one simple surgery, they're completely cured, and the doctor never has to see them again.

    So please, give your husband a big hug for me, and tell him I said “thank you”.


  87. Thanks for your reply, Dr. Rob. I very much appreciate the fact that you're willing to address this topic. I'm sorry if you took my remarks to imply that you have written an apologia for doctors' egos. Not at all. Indeed, I'm very glad you're talking about this in real-life terms, from the doctor's point of view!

    Just so you know, I don't let my medical problems pile up, then take “a ton” of them to my doctor. I deal with my problems as they arise, and most of them are treated by my rheumatologist, whom I see 2x a year minimum. I see my PCP for an annual checkup, still get my pap smears and mammograms and all that. I see my specialists when I need to. I just can't do the “check in every 6 weeks to 3 months” process with all of my doctors, which they would all have me do if I let them. I recognize that “dumping” a long list of problems on any one of my docs doesn't help anyone, therefore I don't do it. Neither do I see the point in going to a doctor if I'm not in immediate need of their particular services; I have a $15 co-pay to see my PCP, and a $25 co-pay to see my specialists, and I can't do that on my limited disability income just so we can have a little conversation over my unchanged condition. (I realize you may have meant to aim your comments for a broader audience, I'm sorry if I sound too defensive giving you my specifics.)

    We all do our best with what we've got, and learning to have a harmonious relationship with one's physicians is a life skill worth knowing. Thanks again for this article, and for your reply.

  88. Chronic Connection

    Dr. Rob, thank you so much for everything it took within you to write this letter! This is one of the most powerful posts I have read in a long time and will be sure to share the link with the readers at Chronic Connection (my blog).

    Reading your letter reminds me so much of my own primary physician. I'm extremely fortunate to have a doctor who “gets in”. In the last few years, since my health has deteriorated, our doctor/patient relationship has definitely changed, but in a good way. We are much more like a “team” working together towards the same goal, rather than me expecting a magical solution to all of my problems 😉 Mutual respect and a good relationship are certainly very important components.

    Again, I thank you so much! I wish there was a way for every patient living with chronic illnesses, to read your letter!

    ~ Nancy

  89. I don't know for sure but I think a lot of the problem was that the doctors all thought I was exaggerating to get a larger settlement since the problem stemmed from a car accident. Every time I went in, the dr. would ask who my attorney was, as no one seemed to have recorded that info. I kept replying that I had no attorney, I wasn't trying to sue anyone, I just wanted not to hurt anymore. The next time I went in, the doc would ask again. I would smile and answer the same way. (All I asked when I settled is that they cover my medical bills and replace my car which they did.) I never asked for, nor was I given any pain medication. When I said my pain level was an 8, I was told with great scorn that it wasn't that bad, that I was exaggerating, so I have never, ever said that again. Even if my leg was ripped off, I'd tell the medical professionals that my pain level was a 4.
    I'm really glad that you were able to find someone who believed you but I've given up on finding anyone in this area. I don't believe they exist. I know I sound bitter, and I was for a long time, but I'm really not any more. However, I won't place myself in a position that will bring back that bitterness; hence my avoiding doctors as much as I am able.

  90. We want to cure disease, to save lives, to be the helping hand, the right person in the right place at the right time.

    Three out of four is pretty good results. Maybe you can't cure things that aren't curable, but being there – the right person in the right place at the right time – to be the helping hand when someone is dealing with a bad diagnosis just might save that person's life.

    Thank you for the tips on decreasing the suckishness 😀

  91. Thank you for saying this, Dr Rob. I happen to be a research scientist as well as a patient with chronic disease. That perhaps helps me to see my doctors as real people. People like you are about as brainy and about as knowledgeable as people like me, just specialising in different fields. Still, it's tempting to be childish and to want my doctors to provide things they can't provide. I often wonder how on earth my neurologist can turn up for clinic after clinic, handing out advice and treatments for a disease that isn't going to get better. But she does. I'm so glad that she does.

  92. Thank you for this. And if I could make just one note for doctors in return, it is this: Please just tell me you don't know. I can take it. I don't expect you to be an all knowing God. I'd MUCH rather hear that rather than, “Maybe you need to talk to someone.” Every single time a doctor has implied or suggested that something was in my head, psychosomatic, etc., there has turned out to be a direct physical cause that, once removed, stopped that source of pain.

    I acquired gallbladder disease at fifteen. Years later studies showed that crash dieting caused gallstones. Unfortunately for me, mine were too small to show on ultrasound or x-ray. I suffered horrible attacks for 22 years. Along the way I endured some interesting tests (how 'bout a vaginal exam and tests for PID and STDs while in a full blown painful attack by a strange guy you've never met before?) and misdiagnoses. I could have cried when they finally showed up on ultrasound. Oh and I heard there was another test that might have shown it but no one ever mentioned it.

    Years later I am one of the thick-folder patients and have been misdiagnosed a few more times. I don't mind a few setbacks; when you have a complicated medical history it is understandable that symptoms merge into a confusing group that can't often be separated neatly into categories that lead to a diagnosis on the first try. I will always encourage my doctors to be comfortable saying, “I don't know. We'll keep trying to figure it out.” If doctors wish for patients to be more honest, that's a two way street.

  93. Thank you. I won't bore you with our story, but thank you. It's refreshing to know there are still some people in this profession for the right reason still out there 🙂

  94. Thank you for your post. It is a truly a kindness to patients to acknowledge your point of view to them. How nice it would be if each doctor we actually see as patients could do this.

    From my point of view: The sadness is that I resort to #5 (Avoiding doctors) because #s 1 through 4 and #6 are followed, and don't work in any consistent way. #7 – not a problem at all.

  95. INTPLibrarian

    “I will say that there should be one person you check-in with regularly, be it every month, every 3 months, or yearly (depending on your number of problems and how often things change). “

    I would LOVE to have a doctor I could do this with. Unfortunately, every doctor I've had in the last eight years has moved on elsewhere within a couple years of my first seeing them. (With one exception — my opthomologist. I've been seeing him for over 30 years now.)

    I just wanted to point out that there are other reasons for someone not having an ongoing doctor patient relationship.

  96. The fact that doctors are people, with all their foibles, doesn't just apply to those with chronic illnesses. The doctor I saw as I was growing up assumed that any female who came in with a complaint at all was just being “hysterical.” I came to him as a teenager 5'8″ tall, a dancer who danced a minimum of 8 hours every week, with a knee that kept going out on me. His response was to sit me on a table, put his hand behind my knee and have me straighten and bend my leg a few times. Then said, “There's nothing wrong with your knee – you just need to lose weight.” Seriously. I weighed 130 lbs at the time, and all of it was muscle.

    This guy made me feel fat, ugly, and stupid – not that it's hard to feel that way as a teenager, but when it comes from your DOCTOR…

    I've gone through many doctors in the 20 some years since then. And only ONE in all that time ever seemed to give patients anything remotely resembling care. Most of them can't seem to stay in the room long enough for you to even ask a question. This one doctor said something to me when I showed amazement that he was actually listening to what I had to say, that I think bears quoting. “I've studied how the human body works for X years. But you've been living in your body your whole life. So, while I know about how things work in general, you're the one who's going to have the specifics here.”

    I haven't had a doctor that good in 20 years. And now that I've been diagnosed with MS, I'm really out of sorts. I WANT to not come in with a list of things to deal with. But the problem is, that they can never book an appointment with me any quicker than 2 months in advance. (Except if I have a cold that they know they can fit me in, say, yep it's a cold or yep, it's strep, and get me out of there in 10 minutes without doing more than a cursory exam. In that case, they can get me in on the same day. But they won't even listen to any other questions I have.) So, by the time I get to go in to see my doctor for the scheduled appointment, all sorts of other things have sprung up. And since I know that it's going to be at least another 2 months before I can see them, I can't see putting off asking the questions.

    I've got MS, which is by its very definition chaotic. It's different for every person, and I don't have any idea what's going on, what I should worry about, what I should just take on the chin.

    I want a PARTNER who can help me sort through it. But the doctors just don't care enough to take the time to talk to you. I'm scared of every symptom. Am I going downhill? What do I do? I feel like, with MS, since we haven't confirmed if it's RRMS or PPMS, I should be able to expect that they'd want to get me in if I start feeling poorly – so they can check my liver from the Rebif or schedule me for another MRI if necessary to catch the lesions while they're happening if I'm having a flare.

    What I want to ask you, Dr. Rob, is: Is this type of scheduling thing normal? Should I expect this everywhere nowadays? Or is it possible that I could find a doctor who can maybe work me in within a 2-3 week time frame.

  97. Your frustration is entirely justified. The system stinks and you need to deal with insecure or socially inept doctors, but that doesn't mean good care is not possible. Again, a good doc won't necessarily fix you, but will at least spend time and listen to you. It is a long process, which I tried to emphasize in this post as well as my latest one (Failure).

    My point is that if you show up via brute force, you will guarantee a negative response. If you don't, then you won't guarantee a good response, but you will make it possible. I am trying to give you as much of a chance as possible of not having a bad relationship with your doctor.

  98. Dr. Rob: I'm not sure how I've managed to miss your blog in my years of googling medical topics & innate attraction for the quirkier & cock-eyed things in life. But, I found it today.

    I feel this is divinely dictated.

    See, recently I've begun speaking as a patient advocate to patients and families dealing with Gaucher Disease (usually type 1) and one of the main points I try to convey is the *need* for some degree of self-advocacy in patients with rare diseases. After reading your post, I'm revising just how I encourage patients to do this. As a patient myself (one whom I'm sure has been referred to as “difficult” in the past!), I am delighted at this candid insight into how many doctors may view patients like myself.

    I'd like to ask your permission to include your “rules” (or versions of them) in my talks and possibly in any future educational/informational hand-outs I may print. Of course, any quotes would be credited and I would list your blog as a reference on anything that draws material from your posts. What d'ya think, Doc?

  99. Certainly. Anything on this blog is under a creative commons license which makes it OK to republish as long as credit is given.

  100. No, that's not a reasonable wait time to get seen. I often bring people back weekly if I need to. If people need to be seen immediately, we have them come right in. It's probably poor management of the office more than it is doctor personality (unless the doc is the one who manages the practice).

  101. Doc, I'd like to respond to your point about scaring our doctors, but first, as to your advisory bullets:

    1. Sorry, but I don't have time to play courtship games. If a doctor condescends, tries to talk over me, ignores my input, or pooh-poohs my research, I'm going to stop the conversation (which at that point is actually a diatribe, anyway). I understand that not all researchers know to verify their sources, that I have to check the dates and certifications and trials, that some of the information on the Internet is crap. I really don't need every new doctor, nurse practitioner, and PA telling me any of those things again. So, yeah, the last time a doctor said, “You know much of the information on the Internet is suspect,” I responded with, “There are somewhere between 44,000 and 98,000 iatrogenic deaths per year. How many deaths are there from bad Internet research?” Too strong? That doctor is still working with me. I respect him, and he doesn't fluff me off.
    2. We try, Doc, but I wouldn't have come in if I didn't think I could respect you. I know what you had to go through to get where you are. You don't initially know squat about me. Also, there are limits. I call young doctors by their titles, but I'm 51. If a 35-year-old is going to get his panties in a bunch because he doesn't think I'm respecting his knowledge, he needs to get a grip. The New York Times just published a study on DCIS that demonstrates the problem of accepting a first opinion as definitive, yet some doctors are insulted if we suggest a second opinion. Respect is a two-way street. You get the title, and you get to charge me for coming in for a chat. Everything else has to be earned.
    3. I haven't had a PCP for years. I had a run of bad luck (I managed to find all the guys who graduated at the bottom of their class), and got tired of looking. They all seemed to be doing nothing but refering me to specialists. I can figure that out for myself. So, currently, I have a pain specialist, a pulmonologist, a urologist, and an otolaryngologist. If pressed, I list the pain specialist as my PCP.
    4. Fair enough.
    5. Sure. Cut your prices, and we'll come in immediately when danger threatens.
    6. Agreed. I have a few doctors who don't totally suck. Not so lucky with PCPs. The last time I saw a PCP, I went in with a hard, 1″ node on the back of my neck. I had no idea where it had come from. It was only a little sore. I hadn't been sick in over a year, and I'd had no injuries. I showed it to the doctor and asked him what it could be. He hmmm and said, “I don't know. What do you think?” I said I think it's a node, and I have no idea what could have caused it. I asked, “Is this something you should x-ray? Or biopsy?” Again, he said, “I don't know. What do you think?” I said “I think I have somewhere else I have to be.” Diagnosis by Socratic dialogue or just an idiot with a medical degree?
    7. I'm okay with that.

    So, as for the idea that we scare doctors, I think that fear is misplaced. I think you're correct as to the source of that fear, but we're the little failures. The big failures aren't looking foolish by not being up on the latest research, we know how much research is out there and that not everyone can be on top of all of it. You should practice failure in that way, inure yourself to being wrong, to failing. Like I said, I'll forgive you. If more doctors would face their fear of failure, they'd be able to accept and then learn from their big mistakes, the ones that cause death and disability.

  102. I am in no way defending the doctor's reaction, I am simply telling you it is there. You may not like the fact that docs are insecure about their position of power, and that many are jerks, but you cannot avoid it. I do my best to admit when I am stumped and not pretend I know what I don't – which to me is the most important attribute of a good doctor: you have to know your limitations/weaknesses.

    It's your choice to disagree with these, but looking at the majority of comments here I think people understand the intent of the post: to help people with a bad situation keep from making it worse by sabotaging their relationships with doctors. You are right, sensitivity and respect are a two-way street. That is exactly the point of this post.

  103. Our nonprofit patient advocacy organization is always searching for interesting content, and we've found a winner for patients with essential tremor and tremor related movement disorders that are chronic and incurable at this time. Letting you know we are sharing this blog, about you, with our Spikes & Spasms quarterly newsletter readers. Expect new subscribers!

  104. I found this to be a very interesting post – to see things from the doctor's point of view. I have an odd, in the middle of two worlds point of view. I am the Mom of a boy with congenital hydrocephalus and I have to cope with all of this from a patient's point of view (my son is three) and I also run a website that supports parents of children with hydrocephalus. Through that website I have taken on more of a doctor-like role in that I have to make people understand the lifetime of medical issues that they are about to enter.

    My single biggest advice to new parents starting out, which would apply to anyone with a chronic condition I think, is that it is your job to find the right doctor. Not the doctor with the biggest office, the most publications, or that worked great for your best friend Suzy. You need to find the one that works for you or your child. I have met some of the most talented, caring and incredibly helpful doctors in our journey and we have been blessed by their presence in our lives. I have met jerks that should have been demoted to janitors and should have their license revoked before they hurt anyone else. I have also met doctors that worked wonderfully with one patient that can't seem to do anything right for another – you can't marry just anyone you meet on the street and have it work out, and not all doctor-patient relationships are matches made in Heaven either.

    I encourage parents/patients to have the highlights of their medical and surgical history, along with their med lists, all typed out on a single page and ready to hand to new docs and ER docs so that you aren't both flailing about figuring out where to start or trying to remember important details in an emergency.

    I have also felt the helplessness when a parent reaches out to me and I have to tell them that unfortunately hydrocephalus really does suck and that the brain damage is real and that it isn't likely to be “just fine”. I have stayed with them on the phone through the long night before the pregnancy has to end because there is no brain left. I tell parents to be kind no matter how much they are hurting, because it's really awful for the doctor too.

    But I would give doctors some advice as well. The best relationships for me have always started when the doc is willing to acknowledge right off the bat that I'm not just a newbie off the street. A simple comment like “You're really organized”, or “You have certainly done a great job in learning about your son's condition” will often take the edge off of a Mom who is tired of starting over and over again at square 1. I would encourage doctors to make that first appointment a bit longer than normal appointments because it is impossible to explain a lifetime of complicated problems in a 15 minute appointment.

    I have been told off by doctors that my son is “not their only patient” and I need to understand that they can't get back to me right away. This, I feel, is a two way street – I will pledge to only call you and hit the panic button when there is truly an emergency and you as a doctor need to understand that no matter how many patients you have, my son's shunt infection can't wait. There is a very special terror and helplessness that a Mom or patient feels when you know absolutely, without a doubt that the situation is serious or even life threatening and you are at the mercy of someone else who has the power to tell you that they don't have the time. This terror knows no bounds and must be considered when you tell someone that you can't work them in this week. Patients also need to understand that specialists in particular and docs in general are often so overworked that it's a wonder they can drive home at the end of the day – so don't demand the immediate appointment unless you really need it.

    Life with a chronic condition isn't easy – the best you can do as doctor and patient is to make it as easy as possible for each other.

  105. Wow Powerful article. Having worked in pathology and nursing and then management before going blind, having a right total hip after falling, and on and on and on, I dont believe I have ever seen such a very human letter to patinets that lets us all know our frailities, weaknesses, etc…as both patients, doctors and healthcare providers. Your article on ER docs certainly touched me. The last time I went the physician told me that I should either see a chiropractor or in the alternative go to bed and lay in the fetal position. As educated as I am and having worked at this very hospital, been on the pholosopyy committee, employee of the month, code team captain, and blah blah blah; I nearly fell off the stretcher. I asked her if she was serious and she simply walked away. Thanks so much for your letter. It has helped and I only wish you were my doc; I think we would get along just fine.

  106. It's good to see a doctor admitting to the negatives that they can bring into the relationship, but I think there are aspects you missed, possibly simply by being the doctor rather than the patient and it can't hurt to take a look at those.

    The idea of having to 'fix' the patient is still very much Medical Model of Disability and can be a problem in itself. 20 years into spinal damage, chronic pain syndrome and other stuff I'm not actually looking to be 'fixed', I'm perfectly happy with a pain management programme that largely works, I just need a doctor to support me through the mechanics of accessing the drugs and any other treatment I need. The training of doctors (and other medics such as physios) tend to fall short of recognising and emphasizing that often a fix is not what the patient is looking for, and unless you recognise that then you will fail the patient's expectations.

    Don't come on too strong? The last specialist I saw didn't let me finish a single sentence in a half hour appointment. I had to fight to deliver what information I did do, and ultimately to make sure I'd left my prompting notes on his table in the hope he'd at least glance at them. I suspect he's competent, but he'd be so much better if he toned it down and listened, and it was only by having the strength to talk through him that I delivered what information I did.

    Show respect? This is the one that annoyed me. I show respect when it is earned, and medical degrees are just a hint, not evidence. When it comes down to it there's a pretty good chance that I'm the smarter of the two of us in the room and I've certainly got more first hand experience with how MY disability works, so I'm not about grant a doctor some automatic deference by virtue of a piece of paper on the wall. I've seen enough of the seedier side of medicine to have precious little respect for doctors by default. Ironically the same doctor I described above regained a considerable degree of respect by simply having the courtesy to apologise when he made me yelp in pain during his examination. So simple, but so often forgotten.

    Ultimately the medical profession finally seems to have admitted that doctor as little tin god is not helpful, but they don't seem to be doing an awful lot about fixing it.

    Dont avoid doctors? This is where I think your lack of first hand understanding of patients with long term illnesses and disabilities is playing you wrong. Are you aware of the Spoon Theory? (http://www.butyoudontlooksick.com/articles/writ…) If you aren't I urge you to take the time to read and understand it because it is an incredibly powerful analogy for the experience of many people with chronic illnesses and the choices they force upon us. I'm lucky to get out of the house twice a week; if I go to see my GP the appointment is inevitably hours before I would normally be awake, there's a physical cost for the ten minute drive to her practice, another for sitting waiting, another for driving back, never mind any side trips to the pharmacy. It's not unusual for the effects of going to see my GP to put me in bed for hours. Faced with that situation, of course I stockpile the issues I want to discuss with her, because I only make the trip to her when I absolutely can't avoid it any more. I know it isn't efficient for her, but it means considerably less pain for me, and faced with that choice GP convenience loses every time.

    Does it suck that I have my disability? Not at all, that's just life. Do other people's attitudes suck, yes, frequently (and some of those people are doctors), that's why I advocate for the Social Model of Disability to replace the Medical Model and for people to re-evaluate how they relate to disability.

  107. Again – I am not saying that it's right that we doctors are not healthier in our egos, simply that you have another human sitting across the room from you. Some docs don't let you get a word in, but there are others who do so because they don't want patients taking over the visit. That may not be healthy, but it is the way many doctors react, and understanding it can help you with some docs, at least.

    In terms of respect, I would point to the fact that the patient is trying to get something from the doctor at the visit; that is what the relationship is about. The doctor possesses something that the patient needs (expertise, experience, ability to prescribe, different perspective) and that something has been gotten through hard work and sacrifice. Understand that I see hundreds of patients with chronic illness. I am not asking for “honor” – as in treating me as a superior, I am asking for respect – which means I want the patient to treat me as more than a vending machine for prescriptions. Certainly I am asking to not be treated with disrespect. If you disrespect a doctor, you will not get good care. If your goal is to get something out of the visit, you have to put in the right currency at least.

    I do understand that there are doctors who are disrespectful of patients. That is why I have rule #6. Those doctors don't deserve respect. Those doctors make the rest of the doctors' lives difficult. I may hate them more than you do because I have to clean up their messes all the time.

  108. I think this article is great.

    I have chronic illness and accept that there is a limit to what anyone can do for me.

    I meet so many embittered people who on the one hand expect their doctors to perform miracles and on the other hand think there's something wrong with treating a doctor with a bit of respect. A close relative of mine is totally eaten up with it and would be so much happier if he'd just accept that his doctor is a very intelligent, very well trained, very experienced *human being*.

    If I were a doctor, I'd begin to get thoroughly hacked off with patients who expect me to give them treatment that doesn't exist, not just on a once off basis, but again and again.

    My doctor isn't perfect. But he does his best. What more can I ask?

    I sincerely hope that people will read this blog post and stop to think about what it might be like from the other side of the desk and maybe treat their doctors with the same respect that they themselves demand.

  109. Thanks for a compassionate and pragmatic letter for people in an inherently unfair situation.

    As much as it can sometimes be frustrating to play dumb in order to work with someone with an advanced degree, your advice is dead on. I've come to appreciate the need to think carefully about how to present information. Although there are times that I feel I know more about some aspects of my child's specific disease than the provider, they almost certainly know more about medicine. They have a broader outlook, and have been exposed to a much broader range of experiences. When I focus on providing data, and let them provide opinions and context we have a better chance of making good decisions together. Of course, there are still providers who are difficult to work with even when you try to do it their way, and sometimes I can get overwhelmed and have trouble focusing (or maybe rant a bit), but it seems to help. And if they really don't seem to get it, the questions can become a bit more… directive?

    It's easier for me though – I don't have to be both advocate and patient. I have the energy to write summaries, drive long distance, read journal articles and follow through on details. I'm not sitting there in pain if it takes them a while to get past the “is it real” questions. I have the utmost respect for the patients who have to do this for themselves.

  110. Spoken like a true professional…and a priceless doctor.
    It is SO important for those of us living with pain to find the right doctor,
    and I hope each of your patients appreciates the fact that they have. *smile*

    Strength Through Unity,


  111. If the way that a doctor reacts isn't healthy, then shouldn't we be taking steps to correct it, not pander to it?

    Doctors are entitled to my politeness, respect can only be earned. Some doctors have earned that from me, others have earned my profound contempt. I am, was, an engineer working in a very specialised domain with peoples' lives relying on the correctness of my work, but I don't believe that entitles me to any automatic respect and I don't believe that of any other profession.

  112. agree with this one. i should NOT be the one informing my neurologist about possible up-and-coming treatments for my disease. if the technique has gone far enough for me to know about it (and i'm not a super researcher), i'm positive he should have heard the term in an article, at a conference, in speaking with his colleagues …

    i'm not looking for a cure from my doctors for an incurable disease. i'm not looking for medication for symptoms if no such medication exists.

    but i AM looking for respect.

    – respect for my TIME (i've waited 2 hours past the appointment time with my husband's chronic illness doc so that he can come in, ask all the same questions the med student asked first, and then spend 25 seconds giving an action plan before leaving).

    – respect for my quality of life (yes, i CAN make it through the day with random bursts of dizziness/lightheadedness, but it'd be really nice if you could show some kind of concern as to why it might be happening and not just stare at me like i'm making it up)

    – respect for my money (don't make me take off time from work to come in and pay a copay to get test results … “everything's fine.” gee, thanks.)

    – respect for my interest in knowing what's going on (could you EXPLAIN wtf a hypersensitive parasympathetic ANS response is? and what it means? and where i could get more info? and where it might have come from? and what i can do about it? and how many others have it? and if it's dangerous? anything???)

    i could go on and on. i don't feel doctors deserve respect because they're smart and they went to med school. they deserve respect if they GIVE respect. DON'T make us feel like we're taking up your time. DON'T waste my time. and for the love of god, DON'T make us feel guilty for having a disease you can't cure. (you're scared of me? really? that's rough. almost as rough has being the one HAVING the progressive incurable disease. oh, and making about 1/8 as much money as you to do it. i'll send my apology through your rude, inept staff. we'll see if THAT message ever gets delivered to you, since none of the others do.)

  113. Dr. Rob,

    What I expect most from a doctor is respect. I treat with respect those who treat me with respect. It's a two way street and too many doctors feel they can treat their patients like children who don't know anything and don't take seriously what we complain about. I know what is normal and what isn't… I should: I used to be normal. I am not a hypochondriac nor an hysteric.

    I once spent a month in a psych ward while I had an MS flare. Talk about being dismissed.

  114. I do respect my patients' time. My staff is not rude. I don't make people come in for test results. You attack all doctors for what some do. You have me on the defensive for something I don't do.

    Look, you don't have to respect doctors or treat them kindly. You don't have to follow any of these rules at all. It's your choice. But when they seem distant and seem to want to get out of the room, understand that the problem in the relationship may not be just on one side. If you doctor treats you terribly, get another. Really! There are some of us who don't treat people like your doctors do. I don't refer people to docs who treat my patients poorly.

    If your approach to docs in the exam room approaches your response on this post, then it is not a mystery as to why you don't get good service. Be mad if you want, but you misread this post if you think I am saying that patients should be docile and subservient to rude and tactless doctors. If you read the rest of this blog (see especially the “doctor rules” at the top of this page), you see that I hold docs to even higher standards.

  115. I am done responding to comments. If you have wonder what I think, I probably said it already in another comment.

  116. Thanks for the insight.

    There is a potential pitfall with the “a few problems at a time” recommendation in point 5 – it can result in a misdiagnosis based on one symptom. Case in point: My daughter's scariest symptom was getting dizzy and falling down. Several doctors focused narrowly on that, ordered a variety of targeted tests, found nothing, and gave up. My daughter told me her full range of symptoms (two pages worth), leading me to suspect that the dizziness was just one aspect of a systemic problem. It turned out to be Lyme Disease (without any visible rash). The treatment, thankfully, is working…

  117. disenchantedpatient

    It's worth mentioning that the danger to patients from a negative interaction is much worse than to the doctor. We can have serious, life-threatening issues be missed. In May of 2009 I developed nearly suicidal face pain. I already had a host of chronic disease diagnoses and was being cared for by a specialist in a pain clinic. Not even constant opiates and patches and nerve blocks could manage the pain — and being on controlled pain medication, even from a pain clinic, made every specialist I saw to get to the root cause (several neurologists, who diagnosed both trigeminal neuralgia and being hysterical about trigeminal neuralgia) instantly suspicious, prone to suggesting the face pain was DUE TO the pain medication I had been put on to control it (or some other character defect that had made me con my pain doctor into prescribing me pain medicine).

    In despair, still on pain medication to get through the day, increasingly unable to even speak because of the pain in my face, I went to the Mayo Clinic, where the neurologist in the face pain program hospitalized me as a drug addict and brought in pain specialists to try to detox me, who mocked my inability to get out of bed. I checked myself out. They did not run any tests on my brain or facial bones. Nobody had, other than my pain doctor's brain MRI. I did not know what it could be and was sinking.

    Shortly thereafter, there was some revelation: I had a root canal that made the pain dampen significantly for a few weeks. Xrays revealed probable jaw involvement. When I moved and established with a new dentist, he was unwilling to order the CAT scan of the jaw urged by the dentist where I used to live, suggested that I simply have 6 tooth extractions. With worsening pain, and sure I needed to have the scan ordered, I visited an ENT, who I heard go to the next room, call my present dentist and laugh with him about how I was a meth addict. I asked my primary care doctor to order it, and she suggested it was not a priority, and acted as if I were, indeed, coming on too strong. I deferred in order not to ruin a new relationship.

    I had the scan later in the week, at the emergency room, and it showed lots of fluid on my jaw. I had a fever as well: emergency surgery revealed that the fluid (and facial pain, and now facial swelling) was from a severely inflamed, bleeding jaw bone. My body was attacking itself severely. The inflammation had spread, probably (the surgeon said) over a year or two, to my three front teeth, which were not able to be saved any more. This galvanized me to the look at my problems in a new way: a diagnosis of lupus.

    I was respectful, deferring and deliberately pieced out my problems the whole time. I was verbally attacked even by professionals I trust, smeared behind my back, misdiagnosed with outrageous things, and nearly (from several perspectives) killed by the medical system. What I had needed swift treatment, and the politics of medicine delayed it every bit as much as simple, individual human error. Perhaps your formula works for you and your patients. But, the reality is that doctors come to the table with other prejudices than medical omnipotence: what insurance you are using affects your care by class assumptions. If you are using Medicaid and not well spoken, you are poor, stupid and easily pushed out of the way. If you allow your eloquence and knowledge from working in healthcare to shine, you are pegged as having Munchausen's, particularly if you are a young woman who simply shouldn't know so much. If you are on controlled substances AND a young women AND poor, you are assumed to be drug seeking or a criminal (and I have been bluntly informed that I am these things by doctors who have met me thirty seconds earlier and simply glanced at my med sheets). Doctors who've reacted poorly to my assertiveness as a young woman have been quickly persuaded by my husband's assertiveness. Even the doctor I trust, who now manages my care for a chronic inflammatory condition, who has been with me the whole time, we have strategy around, for the mundanest needs: a prescription refill or appointment request. For the first, my husband has to call — the staff, puzzlingly, does not respond to my prescription requests. For an appointment, should something emerge, I have to call and vocalize my distress, or I will be scheduled 6 weeks out.

    I agree with you that there are doctors like you out there, with whom chronically ill patients must simply interface better (and who could interface better with chronically ill patients). However, there is a growing, mounting trend among doctors I see to actively discourage, dismiss and even attack chronically ill patients. They believe we are everything wrong with the medical system: overuse, overmedication, hypochondria. They are not afraid of us; they hate us. One doctor, a “narrative medicine specialist” PCP, told me, after (as requested) “hearing my story,” that she would not treat me; I was “a person who's had a lot of surgery” and “need someone to deal with my head first.” I had a nurse (in the ER for an anaphylactic allergic reaction) bait me: I denied wanting pain medication, because the hives from the allergic reaction were making me itch — it was the last thing I wanted. My husband suggested I could benefit from it with the addition of Benadryl for itching, because the reaction was so severe. The nurse asked, “What does she usually get?” He answered, “Dilaudid makes her itch the least.”

    She told us she was going to throw us (me with hives on my neck) out of the emergency room for “asking for pain medication by name,” and fabricated a story for the doctor where we had done just that. This resulted in a half hour spent dealing with the nurse's lie rather than the nearly exploding hives on 90% of my body. I was admitted before her bile had significantly affected my care.

    There does exist a simple misunderstanding between chronically ill patients and doctors in some cases. There also exists systematic, punishing hatred toward the disabled and chronically ill, that threatens our lives and wellbeing. Every chronically ill person I know has encountered not just fear but outright hatred, at every level — medical staff, nurses, doctors, specialists. It has impeded my care. It has cost me teeth and years of pain killer blackness.

    I do not fault the doctors who simply did not know. I fault the ones who punished me and shamed me for being sick, who hid salient test results from me because knowing I was ill would (from notes) “encourage illness behavior and visits.” I think of each of them every time I look in the mirror and see my missing teeth — and there may be more missing teeth because of the slow diagnosis of my jaw inflammation. Sometimes I would like to write them and tell them how much their hatred, sexism and classism cost me. But I would not know where to begin.

  118. Thank you. Your response has encouraged me to take steps to ensure I receive better care.

  119. i should have specified that i was not talking about you, dr. rob. i don't know you at all aside from this one letter, and i'm glad you wrote it. i was responding to the commenter before me. perhaps there are neurologists who don't have the aforementioned problems outlined in my post. it's just a shame they don't practice near me. i've seen almost all the ones who accept my insurance.

    i used your comment section as a venting place because another commenter expressed something that i agreed with. i don't ever say any of these things to my doctors because i do try to respect them. but as a patient who is not respected back (by MY doctors, not by you), hearing “they're afraid of you” made me extremely angry. i'm afraid of me too. my body is attacking me and i don't know why. but i deal with that 24/7. my doctors can be scared and frustrated for the 10 minutes they see me. that doesn't mean they shouldn't try.

  120. I caught this post on Livejournal and I think it's pretty sound advice. Several of your points I've actually come to realize throughout my life, like the bit about ERs, since I've been chronically sick since I was 8 years old (I'm now 26). I'm one of those “complicated cases” ranging from multiple drug allergies to a compromised immune system from my RA meds to polycystic kidney disease, with a handful of other things thrown in for good measure. I have had some doctors that come up with totally ridiculous reasons not to see me. It delights me when I see a new specialist (like when I recently had to start seeing kidney docs for the first time instead of mostly my trusty ol' rheumy who has been on board for 18 years!) and the new specialists spend a little extra time taking a thorough history, as it helps both of us later.

    One thing that I've done that has cut down on time wasted and probably errors is to always print out a current list of medications, allergies, contact info for my other doctors, surgery dates, and “key medical info” that has my main diagnoses on it. It's a single sheet of paper, and it lives in my chart, and doctors and staff are all really pleased to get it. It's like a cheat sheet. 🙂

    I value when doctors are not intimidated by the knowledge that I have since I try to be an informed patient. I value when they don't talk down to me. And as for the time thing that a lot of people have mentioned… I almost always wait in my rheumy's office, often for quite a while. But when I get in there, the doctor spends the same amount of detail and time with me when I need it, so I think that that's something to be considered as well. If you wait for two hours and get a two minute consult, well, sure, get a new doctor. But if you wait for two hours and get an hour of the best care you've had in years, the wait might be worth it.

  121. New here, got linked from elsewhere. Thank you for this post. I genuinely had tears streaming down my face from the first paragraph on – both because it is so amazing to hear a doctor understand so well our plight as chronic illness patients and get that doctors are imperfect but trying their best, and also because I'm still so frustrated. Tears of gratitude and anger flowing at once.

    I get it, you know. Doctors are human beings. And you've trained hard and long to learn how to cure people and we, the uncurable, are frustrating to you. But it's a million times more frustrating for us, not only having to live in these bodies but to have to go to doctors who don't want to treat us. At the very very very best, we get doctors who are sympathetic and well-researched and willing to treat our symptoms as aggressively as we wish to treat them. At the worst, we are bullied, ignored, screamed at, told one minute that the doctor will do anything to make us better and told the very next that there is nothing anyone can ever do for us so we better get used to it, given bad recommendations to disability offices that deny us benefits we need, and the list, as I'm sure you already know, goes on and on.

    So on the one hand, Dr. Rob, it's nice to have a doctor lay it all out there and explain why we are so frustrating to deal with and why so many doctors dislike or even refuse to do so. It's nice to hear that it's not our fault.

    On the other hand, why should the solution to this problem be that we, as patients dealing with daily excruciating symptoms, who are already being bullied and ignored and abused by the society we live in, treat the very people who are supposed to care for our bodies the most with kid gloves? I am literally at my most vulnerable in a doctor's office. That is when I desperately need someone to treat *me* with kid gloves. That is when I need to be able to be strong enough to advocate for myself, and I cannot, literally cannot, do that and walk on eggshells around a doctor's fragile ego at the same time. It is hard enough for me to speak up, even to a caring and gentle doctor – much less a harsh and insensitive one.

    Am I saying that this means I storm around a doctor's office making unreasonable demands? No. But I also should not have to psychologically arm myself before stepping into that office. Seeing a new doctor, or one who has treated me poorly in the past (and I'm sorry but many of us chronically ill patients do not have a lot of choice of who we can for reasons having to do with locale, insurance, and finances, etc.) puts me at severe unease. The first time seeing a new doctor, I don't know if I'll be getting one of the ones who will meet my eyes, tell me the limitations of what they can do, and ask me what direction I want to go in. I very well could end up with one of the ones who yells at me until I cry because I am confused, when confusion is part of my illness.

    I appreciate this post more than you know. I honestly do. For many reasons I probably can't even articulate right now. But it still also leaves me angry.

  122. I have to just say “Thank you”, thank you for getting it.. thank you for the advice. This letter was something I think will forever be life changing for me. As a patient with MS who pretty much hates all of her doctors except her primary care physician.. I'm going doctor hunting. I wish I lived in an area were there were more choices. I already drive 1.5 hours for my MS-related issues.. which is not always easy.. but this has given me a hint of hope and i'm going on the hunt.

    Thank you Dr. Rob.. thank you.

    – Jennifer

  123. This is really just more patronizing of the disabled person. Shining them on and making them think you think they're human. EVERYONE, with or without disability, who can use google knows more about their “disease”, condition, drug prescription than their physician, because their physician 1.) thinks writing the prescription is the end of his/her job and 2.) the physician doesn't him/herself know what's available on the internet, and dismisses it, is a technophobe, and basis their idea of being a medical professional on the big pitcher/little pitcher idea of knowledge.

  124. Actually, that was something I'm planning to ask my new pulmonologist about once he gets to know me a bit better. I don't really blame the ED for misdiagnosing me: As I said, they're emergency specialists, not lung specialists. I can't rightly blame them for not knowing about a relatively rare presentation of my disorder.

    Our local ED is going to get an RT on staff soon due largely to complaints from those with COPD and asthma: I'm not the only one who has been stuck in a quiet room and told to calm down. I'm really looking forward to that, since from what I've heard, anyone complaining of asthma, COPD or other breathing conditions will be referred to the RT for evaluation. I have way more confidence in the ability of an RT to evaluate my breathing than an ED physician. Nothing personal against ED physicians: If I had a broken arm, I'd want the ED physician to take a look at me over the RT. But the RT is definitely the better person for the job of evaluating breathing in a person with breathing troubles.

  125. It's a good article and I like many chronically ill patients do understand and respect how hard it is for doctors to deal with long term sick patients.

    I think however you haven't really appreciated exactly how much harm a bad doctor can do to a patient, it's easy to say “get another doctor” but those new doctors read whatever a bad doctor has put in your case notes and this can bias them against you. I have had struggles with medical professionals who'd rather take the word of a doctor I haven't seen for five years who claims that a condition I have doesn't really exist, than the words of two top specialists in the relevant area of medicine who have repeatedly confirmed that the condition exists and that I have it. So when many medical professionals are saying things like “bad doctor says this condition isn't real and you don't have it” and refusing to accept what top specialists have said? The bad doctor has done a lot more than simply waste my time. His words actively impede my treatment.

    Also if you get any mental health concerns written in your notes? Forget ever getting treatment, even an ingrown toe nail will be put down to psychosomatic illness. Doctors seem to frequently forget that people can be mentally and physically ill at the same time with different conditions.

    As a bonus if any doctor ever accuses you of hypochondria? You've had it as far as treatment goes. I didn't get a choice in my first doctor, my mother picked him and he was a really bad doctor, unless you were dying, you were wasting his time, apparently seeing him after losing my hearing due to an ear infection in both ears counts as hypochondria now because that's what is down in my notes thanks to him.

    Basically I can respect that doctors struggle to deal with chronically ill patients, that they're fallible and make mistakes.

    What I don't respect is the number who can't or won't do their jobs because of their own issues and worse go on to cause long term harm to patients as revenge. If a doctor has a problem and they give a patient bad treatment or negatively impact the patients future treatment because of the doctor's problem? Then they shouldn't be doctors since they are essentially betraying the oath they take by doing harm.

    Basically if someone is so badly affected by treating chronically ill patients that they can't help said patients? They need to pass the patient on with a note admitting to their inability to help the patient rather than blaming us for their failure and compounding that failure by leaving nasty judgments in our notes which cause further harm.

    Doctors aren't gods, but when they insist on being treated like it and blame patients for their failure they do incalculable harm.

    Basically doctors wield a lot of power, wielding said power against the patient because they're afraid of the fact that they don't know everything and can't cure everything is manifestly wrong. Patients don't have a lot of power, doctors have all the power in the relationship, even if the patient goes to another doctor, the bad doctor can still cause harm.

    So yeah, I feel sorry for doctors dealing with chronically ill patients, I know we aren't easy to cope with and I will do my utmost to help a doctor who is honest about how difficult it is to handle a chronically ill or disabled patient, I however feel nothing but contempt for doctors who take advantage of their power to harm me because they don't like how treating me makes them feel.

  126. this is the most insightful view of physicians i've ever seen!!!! beautifully written and such a good reminder of how the patient provider relationship is indeed just as fragile for the physician as it is for the patient.

    i have developed an ebook to help patients and providers communicate more effectively through simple worksheets that serve to guide appointments as well as make sure the patient is understanding the provider's recommendations. it is available on http://www.the-first-step.com.

    i would love to have a conversation with you as your perspective is full of integrity and honesty. thank you so much for making my day and helping me understand the plight of physicians. you're simply brilliant when it comes to articulating this!

  127. best thing a neurologist ever told me was even if I did everything they suggested exactly as they said–it may not help. now that was an excellent doctor.

  128. If I could “like” this comment a hundred times, I would. Thank you Dawn.

  129. See my most recent post. I deal with the aftermath of bad doctors on a daily basis. I have to undo their mistakes, reteach my patients, and win the trust of people who don't trust docs. BELIEVE ME, we physicians are well aware of the crappy docs out there and we all wish they'd get hit by a meteor or get botulism. My wish hasn't been granted yet.

  130. The problem Rob is that your post comes across as rather condescending, the poor doctors are just frightened and frustrated, you don't like dealing with the fallout from bad doctors but what you don't really take into account is that all doctors go home at the end of the day, we don't. There is no “going home” from chronic pain or life altering conditions, we live with them 24/7.

    A month down the line? A bad doctor will have forgotten the harm he did to a patient, you will have probably forgotten the strain of fixing the problems, the patient probably will never forget. They will probably live with the consequences for the rest of their lives.

    A doctor injured me in 2005 by performing a procedure on me without my permission, I still live with the pain today because it permanently destabilised my spine, I will never get better from that. No amount of compensation or good doctors will take the problem away caused by a bad doctor who thought he knew it all. When he found out what he had done, he set about poisoning anything he could that was to do with me, now because of him, my medical notes are a weapon against me and it's been used to deny me treatment for disabilities and to deny me help despite the fact that my disabilities can leave me bedbound.

    Compared to the hell one bad doctor can put a patient though? Being “scared” of chronically ill patients is hardly a major thing. Most chronically ill patients go through several bad doctors before finding a good doctor, even after you find a good doctor though, you can still be at risk from the hell that bad doctors have made of your medical notes, specialists read those notes, if 90% of them describe a patient as “malingering” or in other pejorative terms? Guess who gets treated poorly if at all. It's certainly not the bad doctors.

    I'm sure you're a very good doctor and a nice man but the problem's chronically ill patients face go so much deeper than your article touches on, to change the attitudes of the medical community would require retraining so many doctors.

    As for your comments about respect? To some doctors even suggesting alternatives or saying that there's something wrong with the first set of pills they've prescribed you? Is considered being disrespectful, a bad patient and other pejorative terms.

    You might try to empathize with your patients but at the end of the day, you don't know what it's like to not only have a chronic illness but to be treated dismissively, outright abused and otherwise belittled for years if not decades. I had to wait for doctors to take one condition seriously for twenty years, during those twenty years I had to deal with doctors either trying to slap “easy labels” on me rather than looking for a right diagnosis or brushing it off as a “figment of Dawn's imagination” (a figment that other people have witnessed?) it's tantamount to abuse what many chronically ill people go through and to be blunt, if they were treated sooner, they might actually get better or at least get their lives back, it's twenty years too late for me probably, I'm unlikely to recover from this condition even if they can figure out what is wrong with me.

    The poor treatment of chronically ill patients means they have on average a lifespan reduction of eight years or more. Being “afraid” or made to feel “inadequate” by not being able to cure someone doesn't chop any years off of a doctor's life.

  131. Sorry, you suffered with inflammation in your jaw; but you say you were already having chronic pain issues, and getting narcotics, already. You say your Doctor's office will not respond to your request for prescription refills. All these create suspicion, in a doctor's mind that there is more to the story than you care to reveal.
    Sorry, doctor's struggle with narcotic addicts taking them for a ride! If the patient falls ill by overdosing, the Doctor gets questioned by the Drug Enforcement Authority, and they can take away their license to prescribe these drugs; then they have to deal with the negative publicity (Boy! Do the media have a field day!), they are reported to the State Medical Board and their medical license can be in jeopardy. If that does not happen, they still get reported to the National Practitioner Database, and every time they apply for a job, or even try to renew their current privileges, or wish to renew their contract with insurance companies, they have to report this, and will have to undergo further investigation, or have an outright denial.

    Since pain cannot be always quantified, it is easy for drug seekers to get away with more and more pain medicine;after a while, from the long history accumulated by the patient, most doctors can figure out when they are being taken for a ride. Then the long process of, ” Who is to bell the cat?” begins. Once it is obvious, doctors sincerely want to help a patient get out of their addiction, and meet with so much of hatred and resistance, from the patient and their family. All these are extremely stressful to a doctor, and that is why, some take the easy road out and just give in to the demands.

    Sometimes things can go wrong, and things may be missed; most of the time it is a story of “calling Wolf”- the doctor has heard it so many times, that they have had enough.
    This is also something that Doctors are well aware, and hence anytime a” chronic pain” patient comes with a new pain, the doctor has to agonize over how many new investigations they are going to do, and if the tests are going to cause more harm for the patient (eg. repeated radiation). Your own writing tells me that you had burnt a lot of bridges, BEFORE you got this genuine illness.

    No, I am not a doctor, I am the sister of a very good Doctor, who lost his job, because of such people, and I worked in his office, and knew the problems from upclose.

  132. I think what he meant was treat him with courtesy. So many patients these days are so rude, and take pleasure in browbeating the doctor. I especially see it in the Emergency room, but a lot of my colleagues in Primary care are complaining of the same issue.
    If you go to an auto repair shop, or even a restaurant, you do not talk rudely; you know service will be poor. And yet, you take the doctor for granted, because you know that they are too polite, to pay you back in like manner; however, understand that they are humans, and subconsciously will respond better to the person who is polite.

  133. This is why Doctors are afraid of patients. he was trying to evaluate you for Vertigo and had to watch your eye movements, as you sat up, to make that diagnosis. So now, you accuse him of hurting you, to satisfy his curiosity! Believe me, he has seen this before, so there is no need for him to satisfy any curiosity. Then you respond, by your own words, in an insane manner, and then wonder why he wants you to see a shrink!

  134. Erm. Dr. Rob., Where do I begin?

    I really liked most what you said in your post, but I found a lot of your response(s) to people's comments to be quite disconcerting. I really want to acknowledge and honor your humanity as a doctor, and I understand that you want to be treated with respect or courtesy or whatever you want to call it. But in this you miss something central. No matter how 'compassionate' you are as a doctor, you still access ableist privilege. In that sense, our interaction with you/other doctors simply isn't a matter of equality. I say this to everyone, doctors and non. But the difference with doctors is that they are at the center of one of the biggest perpetrators of ableism: the medical industrial complex. While our stories might unnerve you, you're still the subject, we're still the object, and you're still looking at us through the telescope, the petri dish, the hospital teaching halls. In short: you maintain intellectual, experiential, and emotional distance.

    You have said that you see “hundreds of chronically ill patients.” Right. And we experience ableism a hundred times a 24/day, 7/week. It's a full time job that we don't, can't, get away from. I'm not trying to make you feel bad, invalidated, or whatever. I'm simply telling you how it is. Our interaction isn't about two people coming together and sharing stories; but a process and product of disproportionate amounts of power, privilege, and experience that you possess. Whether you know it or not, just by being a doctor, you participate in systems of violence that are enacted in that process: the person who's suicidal because they can't access management; the child who was just diagnosed with CP who's being prodded and poked by residents; the reality that disabled/ill people are disproportionally homeless and in poverty, while doctors are living in substantial comfort; the fact that everything in our society, from reduced bus fare to accommodations at the university, constantly invalidates our voices and means of expressing our needs, in stead favoring yours, the stranger, the expert.

    I really want to stress again that I really appreciate what you're trying to do here, and I think you do a good job of it. Where you fail is your reaction to criticisms posed by the very same people to who you claim to be speaking. That's not a dialogue. It's paternalism. No matter how hard you try, you won't be innocent while working in, and supporting a tyrannical force anymore than I am as a white person in the racist tyranny that's embedded in American culture, language, his/hers/theirstories.

    Have a good one.


  135. disenchantedpatient

    1. I was not on narcotic pain medication prior to developing sudden face pain. I have had Lupus the whole time.
    2. I already had chronic illnesses diagnoses (fibromyalgia) that were inaccurate because the underlying cause of my fatigue, pain, neurological complaints, etc was yet undiagnosed Systematic Lupus.
    3. The narcotics did not help my pain very much because it was due to inflammation from Systematic Lupus. I hated having to be on them, frequently expressed a desire to not take them but the undiagnosed, advancing body-eating-my-jawbone made this impossible. The root cause of my pain was not being treated and so the internal injury was getting steadily worse. It was not chronic and managed illness — Lupus is deadly if it isn't managed, and erodes joints, bones, and vital organs. It was undiagnosed and flaring.
    4. The problems I have refilling prescriptions (which are not controlled substances, thanks! not on any! anti-inflammatories are used to treat Lupus pain most effectively!) are due to my doctor's staff being overloaded, even though he prefers to personally approve every refill (even for Motrin 800). Rather, I am too fatigued to press enough to make sure a refill gets in on time; my husband is not.

    Whatever you're talking about, isn't my story. Honestly, if you'd read my comment with anything but kneejerk contempt for drug addicts, you'd see that it was a story of a diagnosing a legitimate illness after years only by losing jaw, facial bone and teeth. That I was not content to simply take pain medication: I sought to eradicate the cause and need for pain medication, and was abused, and had my diagnosis delayed. Medical staff like you — who can't even read a blog comment before releasing bile– are certainly a cause of such things.

    My doctors are all still practicing.

    But, your false assumptions make a better story!

  136. Dr. Rob:

    I quoted you in my blog post. I look forward to following your work more and would love to have a conversation with you to learn more about how provider's think.

    Your post was nothing short of eye opening for me. Thank you so much.

  137. […] tips to patients on how to make the most of medical encounters, I’m all ears.  Recently, in A Letter to Patients With Chronic Disease, Dr. Rob said, There is something that you need to understand that, while it won’t undo your […]

  138. I am sorry if I sound paternalistic. My attempt was simply to give the visit of a chronic patient through the eyes of a physician. I meant in no way to even remotely equate the situations in terms of their severity or profundity. I was simply trying to say that the nature of a chronic patient goes against what the average doctor wants to accomplish, and so explain why docs do such a lousy job with them. That's really the point. Then I attempted to advise from the perspective of a physician as to how best to get the most out of your visits.

    I do think I am better at explaining the physician perspective, which was the whole point of this. Sorry if it came out wrong.

  139. I respect Dr. Rob for taking a huge risk by being so open and honest. Of course he doesn't know what its like to be chronically ill, that's his point but he wanted to share his inner-most feelings an observations about doctors and their sometimes irrational reactions to well-informed, chronically ill patients.

    I'm chronically ill with an autoimmune disease that will eventually cause liver failure. I am always at risk for developing a bile duct infection that can develop into a blood infection. I always carry antibiotics and have had to go to the ER for IV antibiotics. Because my disease is rare most doctors have forgotten it since they left med-school. My defense is that I keep a packet of documentation; my most recent labs, my most recent radiology report re a liver MRI, a Mayo web page describing the disease and risk of infection, and a letter from my doctor. This saves me time and energy at the ER and I the doctors believe that I am ill. I would think keeping such documentation handy would help avoid problems such as being accused of drug seeking or hypochondria. I'm also part of an Yahoo Group support group for my disease. There are lots of internet support groups for chronic disease. I find that keeping informed and getting support from other patients goes a long way to keep me going. I admit I have a wonderful PCP and a Hepatologist who specializes in my disease. I know it is much harder for folks who do not have good doctors.

  140. As a young woman struggling for the past 3 to 5 months navigating this new and life altering thing called chronic pain, this article really hits home. I'm onto my second primary care doctor, about to move on to another because while she provides care, I feel that she is a little judgmental, lacks the sensitivity I personally need, and as you say, for every visit I feel that she tries to just get done with me as soon as possible.

    Thank you for writing this with such an incredibly amount of understanding, compassion, and guidance. After all, that's pretty much all we ask for from doctors. Your article has given me the hope and motivation that I desperately need to be able to push on and keep searching for a doctor who's right for me. This is one of the most important relationships I will have in my life, and I definitely don't need for it to be dysfunctional!

    With much love and thanks,


  141. Michelle, I, too, have a child with hydrocephalus. You have covered many, if not all, the bases, I believe.
    We now drive 1 1/2 hours to another city to see a pediatric neurosurgeon because the neurosurgery group here in my own town is over-booked and makes no apology for the long waits in clinic and in the ER at the monopolistic/only children's hospital in town. You are right: they don't understand the terror as we see our kids deteriorating. If they did, they would triage more appropriately.

    I think, though, that Rob is speaking for the human fallibility of docs. On some days, they can respond compassionately, in a timely way, and include significant others/parents in the plan of care. On other days, chaos may reign in their offices, in the clinics and ERs and in the hospital nursing units. And service is poor on those days. The only thing to do is acknowledge this short-coming and try to tweak the system to do a better job for all involved.

  142. I love you for writing this, Sophygurl. The last paragraph really struck a chord with me and, once again, has me questioning right alongside with you. I've been feeling the same frustration and anger you seem to be feeling for my short three months of dealing with chronic pain and being introduced to this unforgiveable, cruel new world. The doctors who treat us are treating us as individuals, not as machinery, but I feel that that's the only way some doctors can treat their patients. They need to detach themselves in order to not take on the plight of their patients and go home feeling guilty and helpless. I'm not saying it's right to detach themselves by treating us like crap as many do, I'm merely trying to understand where they're coming from so that I can conceive of a way to talk to them so they understand where I'm coming from. Granted, it isn't fair to have to walk on eggshells and tiptoe around in the doctor's office — a time where we just want to be our real, genuinely disenchanted, frustrated selves. But, if I want to be treated with sensitivity and understanding, shouldn't I be willing to do the same? I be coming at this from a young, naive, and new chronic pain patient's point of view — all wide eyed and hopeful. But this hope is what is motivating me to keep pushing, to keep trying to find someone who can help me and someone who I feel comfortable with. It may take years, but we, the patients, have the power to give access or deny doctors from getting to us. If that means having to walk out of a doctor's office in the middle of his lecture to me about being a dumb, uninformed patient so be it. Maybe that's the rude awakening that doctor needs. But, if I detect a sincere attempt at trying to understand me and my pain, I will do whatever it takes to build the doctor-patient relationship on that foundation of understanding. And if that means offering the same respect and understanding I require, so be it. Anyway, sorry for jabbering on, I just love what you've written as well and wish we could all just sit and have some sort of focus group or round table discussion.

    Much love,


  143. I wish I could see what that other person wrote! I'm so sorry for what you've been put through, from the chronic pain, to the downright abuse from medical “professionals.” I'm only seeing the tip of the iceberg of what to expect, I'm sure, having had experience with chronic pain for a few months, but I'm already seeing what you're describing. Harsh judgment and criticism from doctors and ER staff along with snarky, demeaning comments. I personally think doctors should see therapists during med school so that they can understand how impacting their words and reactions are to their patients. Those experiences stay with us over the course of our lives and shape our view of the modern medicine. Insinuating that I'm a drug addict (a frequent assumption based on my 26 years of age) and treating us like drug addicts before having any reason to do so is just so messed up on every level. It confuses me at times and has me questioning myself — is what I'm feeling truly in my head? Am I dependent on meds and will I have to take pills my whole life (An ER PA snarkily asked me if I'm planning to take pills my whole life). Medical professionals should be the first to know there is a HUGE difference from addiction and dependence. While we may be dependent on meds in order to function — something that non-pain patients just don't and probably will never understand — we don't take meds seeking or chasing a high. Our desire is to live. We want to go grocery shopping, clean our house, have a career and a family, laugh with friends, go on hikes, take our dogs for walks, to be able to sleep and to be woken up by alarm clocks or sunlight instead of awful pain — simple life pleasures. I was told recently by my doctor that I will always have pain and to get used to it. Then she softened the blow by saying that we need to find my level of pain that I can be functional at. This is true and I'm still coming to terms with it, but in the process what I don't need is to be judged, criticized, and verbally attacked for something I don't have any control over.

    Much love,


  144. Rob, you cannot rely on humor on this one. The bad docs need to be turned in by the colleagues who are undoing all the ill they have done. The universe will not send a meteor upon them . . . Someone (like you, treating badly treated patients in the aftermath) will have to stand up and call them into accountability.

  145. I am not talking about people who are criminal, just those who are jerks. The best thing I do for the latter is simply to not give them business. As a PCP, I don't send my patients to jerks. I do inherit patients from docs that are just bad. It's not a crime to be bad, so there is no reporting to do either. I do agree that docs don't report problems with other docs enough, but this is not what I was talking about.

  146. Chris, you have hit the nail on the head. If patients and docs stand on the same side for just treatment and against mis-treatment, bad docs would have nowhere to turn. It's not funny when family members die or nearly die (both in my family's case) and docs stand together as a good boy network to protect the guilty.

  147. Actually, that is one reason I like my PCP. She takes what I say seriously and if I tell her one of the people she referred me to is bad, she believes me. She writes it down and removes the person from her list. That makes me feel good about my doctor.

  148. I had a roommate, Michelle. *Had* is the operative word. She was on disability for depression, a screwed up knee, and chronic migraine. She also had a very long list of medications that she knew she was allergic to. When she would go to the county ER for migraine relief, they treated her like a drug addict because she knew the names of so many meds, and had a “list”, and make her wait for hours, in pain. The only time they took her seriously was when she showded up blindfolded and puking. Oh, and she was severely overweight, even though she only ate about 800 calories a day. Her “primary care” doctor just told her to “lose weight”, and that would fix everything that was wrong with her. When she told him how little she ate, he called her a liar, and told her to “walk and exercise more”. She could walk without a cane, even before the weight gain, of course, and even then not fast. Sunlight made the migraines worse. Her shrink just prescribed antidepressants, which had their side effects, and then he didn't address the side effects. She also had a really high pain tolerance – comes from a lifetime of pain.

    Her boyfriend finally got her to go to a different medical facility, a different doctor. Diagnosis: coronary disease, major clogged arteries – genetic, aggravated by decades of medical neglect and crap medication. She had open heart surgery to put in a stent. Her migraines were probably coronary related. She had another heart attack in the doctors office, and they were shocked at the fact that she stayed conscious. She survived that one, but not the next.

    She died at 41, a victim of poverty medicine and fat discrimination. She was killed by doctors who assumed that “anyone” can “just lose weight and exercise” to be cured of anything without looking at the underlying metabolic problems. She was murdered by people who assumed that chronic pain sufferers are just “drug seekers.

  149. I absolutely agree, David, about the Social vs the Medical Model of Disability. I am not looking to be “fixed” but do need recognition of my condition so that I can get the benefits and help I need. I agree with so much that's been posted on here, that doctors are trained to “fix” people and don't deal well with chronic patients they can't “fix.” I have found the OT and the Physio to be far more understanding of my needs and experience, because their training is to enable people to manage their condition, and they are not looking to “fix” them.

  150. Good post, Gina. You say:

    'One of the brightest doctors I've seen, who diagnosed me with Interstitial Cystitis, told me, “Doctors are specialists, but the patients with the illness are the real experts. Go online and find a community of patients with this condition to really learn the ins & outs of how to conquer this.” '

    How refreshing. When you have M.E., many doctors strongly advise AGAINST joining forums because they think it just reinforces your “aberrant illness beliefs.” I had a bout of milder M.E. many years ago and was told it was all in my head (deeply humiliating) and I had absolutely NO support from anyone – even from my family, who naturally believed the “expert.” If I had had the support of an internet forum at that time it would have saved me so much grief and anguish. When the M.E. returned 3 years ago, I was undiagnosed for 9 months, and joined a forum for undiagnosed neuro patients and it was an absolute life-saver. Immediately after my diagnosis I joined the Brainfog forum for people with M.E. and as a result I have been empowered and equipped. Knowledge is power, and the benefit of mutual support between fellow-sufferers is incalculable.

  151. Hi Kashuneko – not sure where you're located, but here in the UK, many chronic diseases (including MS) have specialist nurses at the local surgery. Many people find them more helpful than the doctor, who is too “busy” – consultations are too short etc. etc. The specialist nurse gets to know you and your situation, and is knowledgeable enough about your condition to recognise when he or she should call in the doctor. As I posted previously about OTs and Physios, their attitude is often more about management than cure, so they are more understanding of chronic disease.

  152. Thank you, Dr. Robb. I am not a doctor, but I do live daily with progressive multiple sclerosis and know the limitations of the medical community when dealing with people who live with such a complicated disease. I have a wonderful neurologist who allows me to participate in my own care, and I never expect any other doctor to know this disease as well as I do. I don't make demands, but will ask for help when necessary. I have NEVER been turned down when I ask for assistance. The one thing I always tell the medical students who occasionally stream through my neurologist's office is to LISTEN to their patients. It makes all the difference! Thanks again for giving us your side of the equation. 🙂

  153. I posted this to a private forum, but decided to share my comments here as well:

    At one level, I've learned how to better advocate for myself by doing just what this doctor describes in his post, through trial and error. A doctor friend told me, in addition, to lead by discussing those symptoms most related to the doctor's specialty, not necessarily the ones that disrupt my life most profoundly (So, in other words, I should start talking more about my Reynauld's Syndrome at the beginning, since that's a defining diagnostic symptom of Lupus even if it doesn't bother me all that much that my fingers and toes turn very purple in response to the slightest cool temperature, including air-conditioning.). And I've done those things, and they've been useful. It has also helped me to detach myself emotionally from the doctor visit as much as possible, so that I don't start crying or becoming emotional myself. I've had a couple of breakdowns that made doctors stop listening to me immediately. So, I do recognize the value of this kind of advice.

    At the same time, it kinda sends all of the social activist-oriented parts of my self into a rage. It's a privileged person telling less privileged people to watch their “tone” when they come with a problem lest they make the doctor uncomfortable. And while I've had to kowtow to these kinds of rules in order to get the kind of care I need, I think it's unfair for this doctor to defend his position as if it represents some kind of moral high ground rather than admitting what it is: a defense of the “naturalness” of doctors discriminating against the chronically ill because they tend to be narcissists with a hero complex, and it makes them uncomfortable when they can't cure something. So, chronically ill patients need to suck it up and play by the rules–they need to go the distance to make the able-bodied doctors (does the doctor presume that there aren't disabled and/or chronically ill doctors?) feel more comfortable when faced with the idea of chronic disease. Which is what those of us with chronic diseases must do to navigate the world in general, right? One would think that the doctors who are paid to deal with us might just learn to get over the personal squeamishness of it all and learn to treat us professionally. And that's my least charitable reading about the whole thing.

    Anyway… I've had some really, really horrific experiences with doctors. One particular rheumatologist (one from the school of “no one who isn't dying actually has Lupus”) told me in no uncertain terms that he could not treat me–or help me–because I would be experiencing major organ failure and experiencing obvious starvation if I really truly had Lupus (we know that this is not true anymore, but it's an Old School position in rheumatology that hasn't been totally eradicated after all). He told me I was just fine, sent me on my way, refused to help me at all. When someone has been making the rounds to doctors for years (and is losing hope that the problem will ever be discovered, much less treated effectively), it is beyond cruel for a doctor to treat a patient this way. I've since found a rheumatologist who will treat me for Lupus, but at the time, I had no idea whether or not this was the conventional wisdom of the field or not–and whether or not I should even bother with getting a new doctor. I was able to fight for access to the kind of treatment I needed, but if I'd been even slightly worse off (physically), I may not have been. This is something that doctors often do not understand: how much it requires of our already-limited stamina to get to a doctor's office, as much as we've had to do it, and what it's like for one's illness to be trivialized again and again.

    Doctors have a ton of gatekeeping powers in our society, and this is painfully evident when one is dealing with a chronic illness/disability. Our lives often depend on a doctor not screwing up, and it would be nice if one would go a bit of the distance toward understanding where we're coming for once, without demanding that we mitigate tone in order to make them feel more at ease.

  154. I don't mean to imply that good doctors don't exist, but I don't think telling patients that they have to be *deferemtial* is helpful. I try not to be oblivious to anyone's emotions. But not being oblivious to someone's emotions is not the same thing as being deferential to someone's degree because they worked hard for it, as though you didn't work hard for what you've got. I tend not to think that any human being should ever be at the *mercy* of another; that is the *definition* of an abusive power structure.

  155. I do not have words for how much I value my GP.

    Why? Because he admits when he doesn't know. He listens when I bring in things I've researched. He always cares about my quality of life issues. He doesn't get upset when it takes multiple tries to find something that will work. His only concern with my long list of medications is the potential for building up side effects and interactions – he doesn't try to take me off medications just because I'm on so many.

    Perhaps most of all because he explains why he doesn't want to do things. He and I talk about when it's appropriate to be more aggressive in treatment and when it's better to take a more conservative approach. He also refers me out to specialists whenever he thinks he'll be out of his depth treating me. Yeah, that gets to be rather often, because I'm a really freaking complicated patient, but I like that he knows where his limits are.

    He also always, always treats me with respect. I can tell sometimes when I see him at the end of the day, or when he responds to a page after he's done seeing patients, that he might be tired, but I never feel like he takes his tiredness out on me.

    I've had a couple of occasions where I wanted somewhat more aggressive treatment because it worked better in the past, and we talked about it and made a decision on it. I've had more occasions where I came in worried that we'd have to do something aggressive and he had more conservative suggestions that helped. There's been exactly one occasion where I really wanted some blood tests done that he didn't think were strictly necessary, but he agreed because it was minimally invasive and it was something that was really, really disturbing my peace of mind (no answer yet on the tests, as they haven't been run yet, but I am very glad he's running them).

    But I've gone through a horrible NP and a fairly good GP to get to him. The horrible NP tried to tell me that I should take tylenol when vicodin was barely taking the edge off my pain, asked me if I'd been referred to a pain clinic at the beginning of the visit (I hadn't) and when I asked for a referral to a pain clinic at the end, refused. She also put me on a drug that basically erased 4 months of my life. I remember little fragments from then, and that's all. The other GP never got upset with me, but I felt like occasionally she got impatient with how little things helped and how many different specialists I needed. I've got a connective tissue disorder, it affects everything, and that means I end up needing a lot of specialists. She also came very close to preventing me from getting diagnosed because she didn't believe I had a condition, when I'd done a lot of research and found it a near-perfect match. She gave in when I really pushed and gave me the referral, and I finally got an answer. I'll admit, I lost some of my respect for her in that interaction because she hung on to her (inaccurate) memory from med school instead of looking at the articles I was bringing her (from places like the Mayo Clinic and the NIH).

    What I've learned, in 3 years of being a chronic illness patient and a lifetime of being a chronic injury patient, is that too many doctors don't acknowledge my intelligence or tell me useful pieces of information. I've also learned that too often, I have to be the one to evaluate the big picture, because they get caught on the details of this visit and lose sight of the whole thing, even when they're my regular doctor.

    I've also learned that doctors who don't do that, who treat me as being an intellectual equal (which I am) and a good researcher (got 2 degrees, won a state-wide research competition, and working on my 3rd degree) and a person who needs to know the practical repercussions of what they've diagnosed me with, are worth their weight in gold. If my current GP leaves his practice, I will follow him if he stays in my city, even though all of my care is at the hospital where he works now. I know it'll be a little harder for him to coordinate my care from another office, but I also sincerely doubt that I will find another doctor who can compare to him.

    My specialists, well, some of them have bedside manners that leave much to be desired, and I feel like I have to be mentally on my toes the whole time I'm there and willing to (carefully!) fight them, but in the end so far they have treated me for the reason they're seeing me. Most of them have even been willing to read the articles I bring them that describe my rare condition, because I know it's unlikely that they will have seen it (or at least, that they definitely will not have seen it often). I have some real loyalty to about 1/2 of them, because I feel like under it all, they believe me and treat me decently. Two of them are up there with my GP in how they treat patients, and I will stay with them as long as they're practicing in my city. The remaining few…I go there because they're just good enough not to be worth the hassle of finding someone new, and I'll admit it will only take one bad incident to send me somewhere else. I'm not afraid of firing my doctors when I have to. It's inconvenient, because then I have to find a new one and hope for an improvement, but some doctors do not deserve my time and energy and money.

    I'll keep that, and send it (and the thank-you cards and small Christmas presents and positive reviews and comment cards) to the doctors who deserve it. Thankfully, some of those DO exist!

    http://www.brilliantmindbrokenbody.wordpress.com (friend of Wren at Rheumablog)

  156. Dear disenchantedpatient,
    The story you have told is horrific and there is nothing I can say except the behavior of the doctors you describe borders on or is medical malpractice. I think maybe a good lawyer is the place to begin a discussion. I'd start with the Mayo clinic first because THEY know better. I apologize to the good doctors in advance but you know that these guys bring the whole profession down just like bad lawyers make all lawyers seem like shysters.
    It is tragic that anyone suffers, and being judged by your appearance while suffering adds insult to injury. It happens to me ALL the time but I warn them not to judge me by my looks because they don't know what I go through and appearances mean little.
    I have a friend who is heavily tattooed, she also has RSD and is in severe constant pain but every time she ends up in the ER, she is labeled as a drug seeker. She's NOT! Thankfully she is very intelligent, articulate and she has the documents that detail her condition, and the contact info for her primary and his cell number. He's a good doctor and he knows that she is judged unfairly and is committed to righting that wrong for at least one patient, even at the expense of his private time.
    None of this should have to happen. I shouldn't have to force a doctor to give me an MRI by demanding that he put my request and his refusal in writing but I got that MRI. And an apology with the results. You shouldn't ever be treated as a drug addict by people who don't know you or your plight.
    In California we have a law that insures that we, the severe chronic intractable pain patient, have the right to have that pain treated: http://www.anapsid.org/cnd/pain/calpainlaws.html
    Maybe you can look at this for terms to empower yourself against such inhumane treatment in the future?
    Bad doctors are out there but we can't let them destroy us or take away our power. You have a right to be angry about the way you were treated and I hope you can find the strength to advocate for yourself in the future.
    And having to call for a refill of Motrin is insane and I'd tell the doctor so! You can buy ibuprofen by the pallet at Costco!
    Best of luck to you

  157. Linda please don't give up! I know how that feels, really, I do and I remember some doctors frustrated me so much that I wanted to scream at them but you deserve care. You deserve relief from your pain and you need to know what is wrong so it doesn't get worse from lack of treatment.
    I often do not respond in the anticipated way to a test a doctor performs, turn this way and do that, does it hurt? I always tell them the truth even when we, the doctor and I, both know my response conflicts with my MRI findings or is odd. I think they respect that honesty. I hope they do. I am 2 years into treatment under a doctor who came highly recommended but I could not stand at first. He had to reconfirm everything all the other doctors had diagnosed through physical tests that brought me to tears and set me into a 2 week flair up of severe pain, he injured me during our 1st visit! I didn't get it, why make me suffer? Just read the notes. Now I feel that he is the best physical medicine doctor I can imagine and I respect him and he, even though I was a PAIN in the ass to him for the first year, respects me. I value his opinion and though he performs the most excruciating procedures on me, I always thank him for the 5 extra minutes of “torture” to get the job done well.
    At first if I told him my pain was an 8 he look at me skeptically because I wasn't breaking down, now he knows that I am mentally coaching myself through the pain and it is an 8 because he's seen me lay still while he does things that are normally done under twi-light sedation with just a local.
    Ask people for referrals, check with some D.O.'s instead of MD's. I have found some of them to be more compassionate, more interested in treating the person than the “disease”. Try patient advocacy groups. But please don't give up the search for help and pain relief. Maybe someone can help you be an advocate for yourself, to lend moral support during the 1st visits and if you don't feel you're being taken seriously, move on to the next doctor. And try not give them the power to make you feel bitter. If they don't believe you whose the failure? they are not you.
    I wish you all the best and I hope you find what you need.

  158. Thank you for your well-stated letter. I am fortunate to have a good and positive relationship with GP and consultant, they are stars in my book and life would be much more difficult without them. Forgive me for adding to your posts, but I wanted to be a positive voice.

  159. I like your idea of approaching a new patient as undoing the damage (to trust) done by bad doctors. I think that's very important.

  160. Nightshade1972

    That's really funny. I'm actually sitting here with a smile on my face as I read your comment. He knows I have hydrocephalus (http://www.hydroassoc.org), that's why he's my neurologist. He also knows I'm on several powerful antiseizure medications–he's the one who prescribed them. He knows I have slit ventricles and a Chiari malformation, he's the one who ordered the brain MRI showing those things *before* the office visit I had with him where he insisted I sit up rapidly without closing my eyes. He literally said “Show me, I want to see what you're talking about when you tell me you can control your dizzy spells simply by closing your eyes. I want you to show me what the “dizzy spells” are like when you *don't* close your eyes.” He made that comment after I'd already explained to him that if I don't keep my eyes closed when I sit up from a prone position, when I change positions suddenly, or when I go from standing to sitting to lying in bed when I go to sleep at night, I get a sharp, prolonged pain in my head which feels like A, my shunt is failing, and B, my head is going to explode. When I tell him all of this, and he ignores what I've just said and insists on “seeing it for himself”, what other conclusion can I draw but that he's more interested in satisfying his own curiosity and less interested in accepting what I tell him, noting it in my chart and moving on? He's not god. I'm not a liar. *Inducing* suffering is not part of the Hippocratic Oath. *Alleviating” suffering is.

  161. Nightshade1972

    I would encourage the parents of children with hydrocephalus to check out http://www.hydroassoc.org. That's the homepage of the Hydrocephalus Association, which has their home office in San Francisco and a satellite office in Washington, D.C. I first started attending their conventions back in '98, and I've continued to attend every convention since. They're a great knowledge base for parents of infants and young children, and there are “peer group” sessions at the conventions which are set aside for moms, dads, spouses, siblings, children in various age groups, and adults. Their conventions are held every two years, so the next one will be in 2012, but I don't think the location has been announced yet. There's also a hydrocephalus community on LiveJournal (http://www.livejournal.com)

  162. Even if that's true, he could have explained why it was important to do that even though the patient had just indicated it would cause severe pain. Of course someone is going to react badly when they're in such pain. That doesn't mean the patient is crazy.

  163. I can understand inducing suffering in order to get information that will ultimately help the patient–but a doc has to give me a damn good reason why I'm suffering like that! A good doc explains himself sufficiently. A bad doc just acts like you should take it on faith that he has a good reason for everything he does.

  164. Nightshade1972

    Thank you!

    I'm still trying to figure out where Daybreak2010 got “by your own words, in an insane manner…” from. I never said I'm “insane”. I never said I babbled incoherently. I did say, truthfully, that the level of pain I experienced caused me to blurt out things I never would have said to my neurologist otherwise. There's a big difference between blurting out things I know I'm better off keeping to myself, and blurting out, as Daybreak2010 seems to imply, nonsensical gibberish.

    Again, my neurologist isn't god, and I'm not a liar. As many others have said in reply to this post, respect is a two way street. Is it so wrong of me to expect my neurologist to accept what I tell him as the truth, rather than insisting on “seeing it for himself”? If he can't respect me enough to believe what I tell him, how can I respect him as a person? As a professional? Yes, other than that one incident he's generally done alright by me. As a person? Not anymore.

  165. Now we are coming around to a place that makes sense to me: trust and respect go both ways. But of course, people who have been burned are wary about trusting again . . . whether those people are docs or patients. The last few posts have been horror stories and those patients who feel burned/betrayed remind me of the parties in a troubled marriage. Those offended parties will not make the first move toward working it out with their partner (the doctor). They want the doctor to make the first move, perhaps by way of apology. They want this from the next doctor, and the next, as well–because their trust is so badly eroded. But of course, someone has to go first, making the first overtures and reparations, in the marriage and in the doctor-patient relationship. Marriage counselors help husbands and wives to do this–or not. But apparently, there are techniques out there to get people back together, again able to do their teamwork.

    But what is the motivation to do this? A husband/wife may want to save the marriage for whatever reasons–the children? The awful economic aftermath of divorce? What is the motivation for the patient/doctor team?

    My theory is, there has got to be something in it for both members of the team. And/or they have to acknowledge that they NEED one another. Patients need doctors, but do doctors need patients?
    If there is no payback for the doc, he won't make the first move towards reparations. Checkmate!

  166. Amen, Chris. I think bad docs stay bad because there is no negative repercussion for being that way. In fact, the bad docs can see more patients in the same time, so if anything they get positive feedback for their malignant behavior.

    I have no good answer to those people who are stuck with bad docs. It is a terrible situation that some people just cannot escape. My hope in my most recent posts (and my blog in general) is to show that this doesn't have to be the case. Not all doctor/patient relationships are poisoned. If people accept this as normal, then they won't see the hope in trying to change at all. They will just build resentment and bitterness (as witnessed by many of the comments here). If there is no recourse for people, they will and do get bitter. I can't blame them for that.

    The root of the problem is a system that hides cost, rewards volume, and discourages taking time with people to help them. Bad outcomes are rewarded, and we are getting bad outcomes. We need to come up with a system of collaboration between doctors and patients, where docs are there to enable patients, not stand in their way, but the only way to accomplish this is to somehow reward that behavior instead of punishing it. The enemy of better is best, and we need at least to make steps toward that goal – which I hope has been done to a small degree in the discussion that is going on here.

  167. I don't think many patients go to a new doc bringing resentment about what the last doc did to them. They come to the new doc because they are desperate for medical help & hoping beyond everything else that they will get it.

    What reform could address this by monetarily rewarding kindness or respect? How could it be measured or reported? Just like prospective patients don't know what kind of grades the doctor got in school, they don't know which ones are unkind & arrogant.

    Isn't even saying patients show up “bitter” at a new doc putting some of the blame on the patient? That is an assumption. Of course someone showed up bitter somewhere sometime… but that is not the source of the problem. The source of it is the mistreatment or mal-practice and then having to still 1) Pay the bill; 2) Find a doc that will treat you; 3) Salvage your courage and self respect.

    This is so frustrating because I think the examples I could share would fill up a book pretty easily. But you could write it off as my “interpretation” and it would not change your mind. I imagine you've seen the Bridget Duffy video already. She only “got it” when she was an anonymous pt in her own hospital. Even then, as an RA pt, I felt she only partially “got it.”

    The examples are too numerous. There is 1 death, 1 near death, and 1 severe disability in my immediate family caused by doctors accusing patients of malingering. There are countless less serious instances. There was parvovirus that swelled up my spine, leaving me barely able to walk. Although I was covered w/ the distinctive B19 rash, the doc told my husband I was acting. And then he handed him the bill. It is frutrating that I could go on all day with stories more dramatic but too personal to share in this format. And it would not change anything.

  168. Ah…you mis Primary Immune Deficiency. 🙂 That was actually meant to be a joke. Your post really helped me to see doctors in a new light. I recall going to the ER with a horrible reaction to one of my regular IVIg infusions. I was so sick, and couldn't understand why the doctor didn't like my rattling off my Ig numbers, infusion rate, Ig brand…I was trying to help HIM to help ME to not feel so awful – splitting head, 102 fever, terrible joint pain….But, in the end, I think my rattling off the info made him feel less competent. You're right – we do that cause we think it helps, but I never thought of it as making the doctor uncomfortable. Thank you for being so honest!

  169. “You know more about your disease than many of us do – most of us do. Your MS, rheumatoid arthritis, end-stage kidney disease, Cushing’s disease, bipolar disorder, chronic pain disorder, brittle diabetes, or disabling psychiatric disorder – your defining pain – is something most of us don’t regularly encounter.”

    This is my big beef with a lot of doctors. For some of them to feel special about what they know I have to pretend I don't know anything. Then there's the fact that if I admit I know all about what medication I'm on and the amounts, I get labelled as a drug seeker because apparently those are the only people who bother to learn about those things. It's crazy-making to have to dissemble and lie in order to get appropriate treatment. It makes me feel like a bad person when I'm actually not doing anything but trying to get treatment for what's wrong with me.

  170. One thing I learned from my last Dr is that more time spent does not equal a good doctor. I had come to her from a previous bad relationship with a doctor where I felt like he thought I was a hypochondriac (I'd be in in 6 times in 6 months for strep and tested positive) and gave me little respect. It also became virtually impossible to get an appointment in a reasonable amount of time. I'd been recommended to this doctor by a friend. At first I liked her, she did spend a good bit more time talking with me and trying to understand me as a patient as a person. Then things went bad. I got really sick and she wasn't there. She'd had a car wreck and had another dr standing in for her. So as I began my decent into the hell I now live in, she wasn't around to see it. She came back a few months later and by then things had gone from bad to worse to bad again (my gallbladder went out in the midst of things). From there our relationship just eroded. I felt like she didn't trust that what I was telling her was real (she basically threw her hands up and shipped me to a neurologist, because I kept coming in with weird symptoms). When I called with something urgent (like when I was sick for over a week with what felt like the flu) I was told by the nurse on the phone to just do a sinus rinse and take Mucinex. My hubby had already told me to leave her once and find a new doc. I kept giving her chances. Finally after many tests by the Neuro, he sent me to a Rheumotologist where I was dxed with Fibromyalgia (on top of the TMJ & massive migraines I'd been dealing with for the last 2 years). When I told my GP about this dx she wanted to be the one to treat me. Put me on basic meds and told me to come back in a month. But when I came back in a month I got her NP who looked at me like she had no idea why I was there or what was going on with me. That was the end.

    The trust has to go two ways and if we, the patients, don't feel like the Dr trusts us and knows that we know our body better than they do (we may not know the causes but we do know when things aren't right and what the symptoms are). When we feel the Dr doesn't trust us, it builds a wall. There is rarely ever ONE right answer to any situation, but unfortunately, too many Drs think they know the ONE right answer and that their right answer is the only one that is right.

  171. #1 says to me that unless we perpetuate the delusion of being God-like, a physician is less likely to trust us. This is amazing. It is also sad. Why should I treat you, a human being, differently than I treat any other human being? None of us is God. And I don't intend to treat anyone as though they are God. The delusion of being God-like is the physician's problem, not mine. And it belongs in the DSM.

  172. I have been my husbands caregiver for 16 years, so we have had good doctors and bad doctors. The good ones have greatly out numbered the bad ones. They went into the brain stem to remove a cavernous hemangioma, 16 years ago, with the options of surgery that they doubted he would survive, or the morgue. He is still here, and still proving the doctors wrong.
    It isn't just the doctors that can't understand what it is like to have major medical problems. Friends and relatives just don't get it.
    He is in a wheelchair because of poor balance, is vision impaired, hearing impaired, has a trach and is on O2, has a feeding tube and can't feed himself, has memory problems, blood pressure is around 94/50, etc, etc, etc. Yes doctor, there are times that smothering him seems like a really good idea!
    Now we have a grandson that has Microvillous Inclusion Disease. Once you look it up you will understand why there are problems with going to the ER with him. I doubt you have ever heard of it, and 99.9% of doctors will never see a case of it.
    Thank you for being a doctor that really seems to care.

  173. I really enjoyed “The Letter”. I know it's the practice of medicine and it's a science also. I think that some people believe it should be infallible because it is a science, but it's not. There's the human factor. I appreciate all of the great care my doctors have given me and understand the frustration a doctor must feel at not being able to cure currently incurable diseases like Parkinson's. Thanks for the advice for dealing with doctors.

  174. Marsidotesathome

    Because I've had many medical issues through the years, I've stayed with one PCP for over 25 years. I do understand the value of getting to know one doctor and have him get to know me. Specialists come and go, but my PCP I travel to, it's worth it. I have fibromyalgia so you know that alone opens a “can of worms”. But, I've been lucky to have been born with patience, lots of patience. After more years than I can bear to think about, I've been greatly relieved of this malady. About a year ago, I started on the Transitions diet, with the PA at my doctors office. It began with a “detox”. I lost some weight initially, but it's back. But, what's not back, is a great deal of the pain I had been experiencing for most of my life. The other thing I did, which I found out about on LJ's Fibromyalgia community…..is to begin taking magnesium. I used to get excrutiating charley horses in my “thighs”. They would last for 15-25 minutes. . . with no relief in sight. I have not been having these weekly visitors for quite some time. That alone has given me a great deal of relief. Now, I can go to sleep with a “clear head”, and not worry all the time.

  175. Nightshade1972

    I ran into a similar problem with my neurologist. He told me he wanted me to start taking Trileptal. I've always tried to learn the generic names of the drugs I've taken over the years (not the long, forty-letters-and-twelve-numbers *chemical* names, but, for example, “acetasalicylic acid” as opposed to “aspirin”). I asked him about Trileptal. He told me the generic name is “oxcarbazepine”. I knew from taking Tegretol that the generic term for Tegretol is “carbamazepine”. It didn't take a big leap of logic to assume (correctly) that Trileptal and Tegretol must be related. I told my neurologist “Oh, no! I'm not taking that drug! I had a very bad time with Tegretol, which I suffered through for six years. I'm not doing that again.” He did a doubletake in his chair, stared at me, recovered his composure and insisted I at least “try” (no pun intended) Trileptal. At my six month follow up I told him that I'd experienced exactly the same problems with Trileptal that I'd had with Tegretol, and he needed to find something else for me to take. I told him it didn't have to be a “newfangled” drug, I'd be more than happy to go back to the “old guard” of phenobarbitol, Dilantin, etc–but I flatly refused to continue taking Trileptal. I told him I didn't appreciate being put through six months of predictable (to me, anyway) difficulties, when all he had to do was listen to me when I told him my misgivings the first time around.

    For me, finding a new neurologist is easier said than done. My current neurologist has actually done alright by me, for the most part. But I'd be a lot happier having one who views our interactions as a team effort, and not as lecturer/student. I can't drive because of my seizure disorder. The area in which we live has no public transportation. My current neurologist is in this neighborhood, so it's easier for my husband to take off work when I have an appointment. My husband is trying to find a job downtown, closer to our major medical center. If he did that, I would switch neurologists so that I might actually find someone who's heard of hydrocephalus, who's had experience treating hydrocephalus, and who's willing to view me as a knowledgeable patient and not as a meddlesome knowitall. Until then, I'm pretty much stuck with what I've got.

  176. There is a cause why people are chronically ill. It is called that they take a bunch of pharmaceutical drugs and get injected with poisons, toxins, and foreign DNA through vaccinations. If people would only realize the dangers of pharmaceutical drugs and vaccines, and do some research, there would be a lot less people with chronic diseases.

  177. So are you saying that I am complicit in this, since I do prescribe medications and give immunizations? It's either I am part of the conspiracy to harm people or I am just not smart enough to see it, if your information is true. I'll leave it to you to decide if I am stupid or evil.

  178. I agree with you that there would be a lot less people with chronic diseases if it weren't for all those drugs.

    Where we differ is that I don't think that's a good thing. People who aren't vaccinated can die of easily-prevented diseases. Without all those drugs, many people who are able to maintain some quality of life despite chronic conditions would instead die.

    Yep, without all those pharmaceuticals there would be fewer people on the planet, hence a lot less people with chronic diseases. Not an ideal way to eliminate disease, imo. I'd rather live an extra forty years with my chronic disease than be six feet under now.

  179. Hi Dr Rob,
    I suffer from RSD a chronic pain that could have been prevented maybe if someone would have listened to me . I was made to feel so like I needed to go home and give it time… That was something I did not have which is what I learned 11/2 years after suffering with such severe pain that the simple things in life that I took for granted walking, sleeping , chewing ,thinking, etc have now become issues…! You are right that we need to respect our new Doc and I am hopeful that they also give us the time not just the 15 min allowed by the insurance co to hear us and listen.. ! I am so lucky to be able to say Dr Scott Fishman at UC Davis Pain Management is by far the most humble Doctor who has said to me you are the only one that can tell me if I am helping you. He gives his pager number and actually answers it in the Airport, in-between procedures, or at the end of the day… this is what I call a caring Doctor who also is aware he does not know everything and is not God…!
    Thank you Doc Rob for your letter
    B. Chew

  180. really? and this comes from what authority? I live in a rural area where a lot of parents choose not to vaccinate their kids and thanks to them and the decision to take the whooping cough vaccine out of the 12 year booster, we had a HUGE epidemic. My 8th grader was deathly ill for a month, as in I had to sleep with her because she coughed till she passed out, and sick for over 4 months. She missed half the school year.
    I have a chronic illness that came all on it's own and back problems, without pain medications I wouldn't have the will to live so don't go getting sanctimonious about things unless you have evidence to back your claims.
    And last, I'd be more concerned about the effect of growing up in a home with smokers, talk about poisons and toxins, than vaccines. Why don't you get working on stopping that.

    PS: Dr Rob, you're awesome. Please tell Mrs Dr Rob thanks for lending you to the cyber world!

  181. smilinganyway

    I pretty much give up. i thought the letter would make me feel stronger but its made me feel less able to fight this system. its too big and im too smalll with a ton of wrong records that i can never erase because i dont even know what i dont know is in thrtant. and im too sick to hire an attorney even if i had the money . i did it the way in the doctors letter for twenty years, feeling sorry for the doctor and being kind and nice and sending cards and not demanding any cures just to be kept comfortable………… so for twenty years i got nothing. why? well, doctors dont stay too long in one place so as soon as you get a relationship they are gone………and if they do stay and they really want to help by start treating the chronic diseased person with compassion and give them drugs to help rather than telling them to exercise for sixty minutes a day the hospital will fire them if the doctor is one of the good ones and defends his patients………. ive had it happen numerous times. and im sick of it. and yes i live in a place with a world renowed medical school and two world renowned hopitals (my doctors were all at one of them for twenty years, so it wasnt because they didnt know me , i had my 60 surgeries here and only here)…………so i did it the slow way, or from my perspective i thioght i had relationships but they were the ones lying to me…………. i made it easy for them to dismiss me and that is jsut what they did. i never demanded anything from them, purposely, to not scare them off. but it was never ANY DIFFERENT years into it. the one doctor i waited for him to see what i told him right off, but he made me jump thru psychiatric hoops for two years. i wanted him to document it finally in my chart that i had the problem i said i had…………. he was starting to see after two years of twice monthly appts he made me come to……………… and guess what, he was fired and after all that i never got the documenting of his findings put in my chart, just the pshych stuff i can never get out. so that is why now i just give up…..i have a brain tumor for gosh sakes and there i was ttying to proove i had all the symptoms i had….and i did do that, all the hoops and all the judgements i waited patiently for the day i knew would come. …….but doctors leave for lots of reasons and that is why many of us are prety blunt sometimes…………and i can t help beliefe if a good doctor feels like this in your thoughtful letter, what do the bad ones feel. and how do i know if the new doctor is good or a jerk?????? because not only do i have chronic illnesses i also have a very rare brain tumor you die from, yet i am alive but i cant get a neuro to even see me. i had to practically beg my current pcp to just read my records and then agree to take me……luckily he knows neuros pretty much cnat do anything for me anyway and is still treating me thank god, not passing me along to someone else , so thats something………………….. so i did it your way doc, i did. but i cant do it anymore, it didnt work. im too worn out in this body to coddle all of you anymore. im the sick one, i appreciate what you say and for saying it and being honest because i knew this long ago……… but i suggest that being seen as a human goes both ways. i did it the human way. all it got me was inaccurate records that will give me grief for as long as im alive, ive seen enough of that to know, and to knwo what i dont know is what the most important aspect of this is……….. i can never defend myslef with things i dont know about. the decks are stacked against those like me. too often doctors think they know me before i even get to the office. that is not fair and i cant do it anymore. i cant jump through the hoops anymore and end up with nothing. there are no real solutions in your letter. you should be able to give us something besides 'just be nice and gentle because we are afraid of you”. i cant do that anymore so im slowly getting bedridden but i keep trying to heal myself because i know i cant coddle not only doctors, but the nurses in the office, the receptionist, the blood drawer, the office manager, and the assisstant when im not even able to think straight from my symptoms. all the jungling in my mind to coddle is too much, do i play it down or be honest? if i smile will he think im lying about my symptom? if i complain about how dizzy i am do i bring a cane so ill be believed? do i bring notes or lists or will that be seen as ocd? see what i mean…………. it s all too much and i suggest to you doc, in all respect, that it is the medical people that should look at their approach to me…………… i am not there to care for you. it is supposed to be the other way around. when the office as a whole or hospital wont do this than many of us just give up and stay away until we drop from something. i am not the one who wont see me, its the doctors. but since i cant do the hoops anymore and in a manner they all seem to want , well see ya…………. it doenst seem to matter that i just go away. its because of my tenacity that im still alive but yet i have to act timid to get any credibility? many places say they want an empowered patient but they really dont. i neve wanted much, jsut to be believed , not even understood, jsut believed ………. my standards were too low. they were the standards you speak of doc……….. no disrespect here…….. i needed to stand up for myself 20 years ago, and now its too late because my diseases are stronger then my will and my will cant take a doctors hand and stroll into a relationship before i get the repect i give them…………..anymore. that is insanity to do the same thing over and over and expect different results. so yeah, until this system changes i have cried uncle. and i cnt change it. respectfully, i think it has to come from the good doctors as yourself. from the inside. nothing i say or do will change it, i have tried. so much that i cant anymore. i love life and that is why i heal myslef for as long as i can. im on my own, not because i want to but because there is no cure for me and we know what happens there. i do appreciate your honesty. i hope you appreciate mine. the thing is, it was an institutional failure for those 20 years and for that i have no words. so while much of what you say is very true for me it just didnt work……………. and now i dont know how to approach any doctor. it has shattered my confidence at a time when a doctors practice is really a 50/50 partnership with the office manager. i jsut cant do it anymore. yes, its my choice right at this moment to stop jumping the hoops. but it took years of moments to get here. always try to rememebr that.

  182. smilinganyway

    i forgot to add that after i cant jump through said hospital/doctors hoops anymore, i cant even talk about it to most people, they act like im quitting or giving up, or tell me to keep trying to find a doctor. i am not the one that gave up on me. the medical system has given up on me. and healthy people my age will never get it. so not only am i denied respect and credibility by medical people , it is the same attitude with most laypeople who assume doctors will always cure you, and see you until they do. i try to tell them its not true and its not fair to want a cure from a doctor and i dont want a cure but no one seems to hear me, they see the respected white coat in their minds eye and believe that fantasy doctor in their head. plus they act like i quit when i say i dont expect a cure!!!!! so its from every angle we get hit. and the silence i am forced into is louder than the tinnitus i dont expect a cure from either. this system stinks and the ones who get the doctors help the most are seemingly the ones who dont really need a doctor! we bring with us to your office a culture that wants silence from us.

  183. Awww, aren't you just a good li'l self-effacing, M.D.-ego-stroking patient. I'm sure you think you're a model for all those other, nasty, negative patients who won't treat a physician like a god.

  184. Please refrain from name-calling. I am writing this blog for adults, and won't tolerate this stuff. I will leave it up because it speaks for the credibility of the person who left the comment. As to the “physician-god” idea, the post itself goes against it. More name-calling or other adolescent activity will be removed.

  185. Thank you so much for this article. Not only do I fight with multiple cronic diseases, but 4 of them are rare ones, making it more diffucult for drs. to understand the problem, then add the fact that I have many of them. This article has really helped me.
    Thank you,

  186. Purplebadger13

    Yes, Daybreak2010 used the term “insane manner” rather than quoting your exact words, but, by your own descriptions, your behavior was not normal behavior for you. Perhaps it didn't seem normal to the doctor either. This is not to imply that he referred you to the psychiatrist simply because of your reaction to this specific test. As a patient with chronic pain and a degenerative disease, as well as Arnold Chiari syndrome, I believe that it was quite appropriate for your doctor to ask you to perform this test to replicate your symptoms. Many times a doctor has to be able to actually see what's going on to correctly diagnose the problem. My pain specialist has asked me on several occasions to do pain inducing tests and it is obviously to help me. Clearly I trust my doctor, and we have a good partnership. This takes time and work.

    Also, there could be several reasons that he wants you to have a consult with a psychiatrist. Chronic illness goes hand-in-hand with depression. If you weren't depressed before becoming ill, it can be very difficult not to succumb to it dealing with everything that chronic illness bring to our lives. Moreover, depression can exacerbate pain and make people irratable and quick to make judgements that are negative. Could your doctor be sensing these things in you? Many doctors leave diagnosing and treating depression up to the shrinks because that is their speciality. None of this means you are a liar.

    That said, after reading your posts, I have to say that I am taken aback by your comment
    “Is it so wrong of me to expect my neurologist to accept what I tell him as the truth, rather than insisting on “seeing it for himself”? If he can't respect me enough to believe what I tell him, how can I respect him as a person? ” Yes, it is wrong of you for a couple reasons. First, your doctor is a scientist who is there to diagnose and, if possible treat you. As such, he/she needs all info possible to to a good job. Your doctor needs to be polite but he is not your friend. If you simply want to tell someone how you feel, with no questions asked to help reach an accurate diagnosis, then tell a friend. If you want an accurate diagnosis, then help your doctor and stop being so defensive. I don't believe you were being disrespected, but jumping to this conclusion was a sure way to alienate your doctor and, in turn, do a disservice to yourself. This is especially true since you say that he has generally done right by you in the past. First, ASK QUESTIONS. This would have at least opened up a dialogue. You could have even asked him if he thought you were lying or malingering. Instead, it seems as though you simply took affront to the whole experience rather than trying to clarify things. I sure wouldn't have left the office without asking some questions such as “What is causing my dizziness? What did that test show? Why do you want me to see a psychiatrist? I got the feeling you weren't believing me, is that true? ” Depending on what he said, I'd probably ask some more questions. It sounds like your let assumptions and defensiveness hinder that progress. Managing chronic health problems is a team effort. Sometimes we have to take a look at our own self-defeating behavior before we jump to conclusions about the other team players.

    Last, but not least, I would find a good therapist with some experience in dealing with chronic illness and/or pain. They can help you with your perceptions (“Is the doctor be disrespectful or not” with objectivity and help you learn to advocate for your self in a non-threatening way so that you get the care you want and deserve. They can also teach you some tricks to getting what you need out of your relationship with your doctor even if he happens to be having an off day or is just plain difficult. I say this with the utmost sincerity because as a fellow sufferer you know that you don't need the hassle and this can help you make it better. It is your life and your money.

  187. As a medical professional who has worked with physicians and patients alike for 16 years this is very powerful stuff. I found myself on the other side of the table three years ago when I was diagnosed with polymyositis…it has completely changed my life. It made me better at my job. I got to see the patient's perspective for the first time in my career. While i'm not a physician…as an clinical assistant, I am a major player in the care of my patients…our patients. I am the first line of defense when a patient doesn't understand why you haven't “fixed” them. It is frustrating…from both sides.

    I applaud your honesty and frankness with this letter. You've certainly said what all of the doctors of the world only think. As a medical professional and as a patient…Thank you.


  188. I've had several doctors be disrespectful toward me, but I've also had a few that seemed to just want to get rid of me and/or were very unorganized. I never stopped to think that, hello, doctors are people, too, and it must be really intimidating to not be able to give someone answers when they expect you to know everything.

    I also have to admit that I haven't seen a doctor in months because it's depressing on my part to continuously not get answers. I really need to schedule an appointment with my PA and see if I can get a referral to a specialist at Yale. My friend has been telling me for years that I should go.

    Anyway, thanks for this letter, Dr. Rob.

  189. The best thing any doctor — my chiropractor — ever said to me was, “I hate to send you away without answers or improvement, but I also hate to see you waste your time and money coming here when nothing is working.”

    I can understand why they would be scared of us, but I think that as long as they are respectful and at least make an attempt, they are still doing their best. I've had a rheumatologist tell me to see a psychiatrist because, after two visits, she couldn't figure out what was wrong with me.

    I also think it is bull that a patient — ANY patient — should have to come into the office for test results that can be given over the phone. I've only had one doctor's office call me for test results, and they have my utmost respect.

  190. I'm annoyed that some people are jumping all over you for your original comment (about being told by your doctor to see a psychiatrist after he did a test that caused you a lot of pain and ended up causing you to say things you wouldn't have normally said). I'm not even going to bother replying to any of them, but I just wanted to let you know that I've had a similar experience and I can understand your frustration. I think my jaw hit the floor when my rheumatologist told me it might help to see a psychiatrist. She had seen me only once before, ordered blood work, and when the blood work came back negative, she suggested the psychiatrist, implying that it might be all in my head.

    No one with chronic illness wants to hear “go see a psychiatrist.” Yes, a psychiatrist can help with pain management and with managing the inevitable depression that comes with chronic illness. But the referral has to be approached very carefully. We just want to be taken seriously. None of us want to be brushed off or looked at as though we are crazy. We all want to be respected, no matter the situation.

    I am not crazy, either, and did not deserve to be treated the way that particular rheumatologist treated me. You didn't deserve it, either. I'm sorry that any of us are dealing with chronic illness.


  191. That part bothered me, too. I thought about it a little more, though, and I think Dr. Rob meant that when we go into a doctor's office, we should not expect them to have all of the answers. I don't think he was saying that we need to baby them. I think he was truly just trying to give us another perspective — which, of course, doesn't count when you're dealing with crap doctors. I had to reread the tips, because I almost left a comment similar to yours. I can completely understand where you're coming from, though. *hugs*

  192. I agree. The last thing I want is to tell someone with medical disease to “go see a psychiatrist.” Sorry to hear about your experience.

  193. Oh how I love your article. I have found it to be so true….respect and a little willingness on both sides goes such a long way. I find if I go in good humoured, with a concise list, and the attitude that I expect to be considered part of the team things usually go very well.

    I have long term chronic Lymes disease diagnosed so late all that can be achieved now is a long term holding pattern. I now have a wonderful medical doctor who has very little ego and is happy to learn from me, and I from her. We both know I won't get better, my liver is too shot for IV antibiotics, and I have yearly invasive biopsies for cancer which I dealt with years ago. That alongside an autoimmune thryoid disorder and a bi-polar tendency. In fact I have so many illnesses I feel faintly embarassed. As Americans would say; 'enough already'…lol.

    One doctor really harmed me years ago. He was very kind but paternal and patriarchal. My hunch said his choices were wrong but he refused to listen to me. I refused to listen to me. His treatment harmed me very much. So now I avoid doctors who fear dialogue with their patient. But I am respectful, I know they have far more knowledge than I and can correctly evalutate suggestions I come with. But I too have special knowledge born of 14 years of experience. Mostly my doctor trusts my judgement and I hers, as does my consultant. I feel safe with them but I don't abandon my own judgment or instinct. It seems to work best for us this way.

    Whenever I have to see a new doctor or consultant I bring a list. On it I list my conditions and the medications I'm on for each, along with relevant family history and drugs I'm allergic to. It gives a simple overview and map of my medical history which I find simplifies matters for both of us. That and a friendly manner has served me very well.

    I have come across the very occasional nasty doctor. Those I report and never revisit. I have only had to do this twice, once for a doctor and once for a particularly nasty nurse. I feel I am protecting others by reporting them and also giving them a chance to address their behaviour. I also make sure the good healthcare professionals, which is most of them, hear all about it. I am very grateful to them and they deserve to know it.

    It should not be us against them. We are a team, battling pain and building quality of life. Thankyou Dr Rob.

  194. Thank you for a great article. I often marvel at my Rheumatologist. I know many of his patients get and worse and of course live in chronic pain. For 16 years he has been kind, consistent, caring, and conservative in his treatments. I built our relationship by regular appts even when I was doing well. I wanted him to know me when I was NOT in pain so that he had perspective when I was in pain. I invested in the relationship. That was a good decision on my part.

    My husband has 3 herniated discs and chronic pain. He has seen many doctors. Even though his MRI's show his injury he still is sometimes treated with disrespect. Treated as if it is somataform. My sister had two back surgeries. So as a family we have had a lot of experience with doctors who discount the patient view. Because she was a scientist my sister did a LOT of research, and as you wrote, this threatened some of her specialists.

    Thank you for your kind and thoughtful article. Thanks for writing the truth. BPLadybug

  195. If it makes you feel better (it may make you laugh, that's good enough for me) my doctor was doing a right SI RFN (lg probe between 2 bones to fry nerves) without IV meds like it is usually done. It would have been a longer wait ti get a surgery room, etc so he asked me if I thought I could handle it…. sure, cakewalk doc! I've had lot's of procedures with just locals… yeah…
    Well after I heard the crunch of the probe going in between 2 bones, he asked what I was feeling and I said, “I feel like I want to get off this table and punch you! but I have this thing in my back so I'll wait”. He understood, it was a new machine and “though it said it was more painful it also is supposed to be more effective. I am sorry.” I still think he's the best doc I have and I didn't punch him though he understood the impulse.
    Daybreak2010 must think she's really smart… or she's in the field… BUT SHE DOESN'T KNOW YOU! (so she can suck it!) And “they” should NEVER tell US we need to see a shrink! Maybe that “it might help to cope if you discuss this…” but if the motivation is anything else, they aren't part of the solution. JMO! And, no, I don't go around punching people! (I may hit them in the foot with my cane if they cut me off though!)

  196. Thank you very much for writing this post. I think it is very insightful and honest. I think that you really have a lot of respect for patients knowledge and I am always very grateful to meet a doctor who has respect for patients. The ability to research, think, and understand is not limited to people with MDs.
    I have had years of my life and tens of thousands of dollars wasted because of doctors egos. After I developed patchy and diffuse numbness and dizziness along with other symptoms, I did a lot or research and it was clear to me that I had an uncommon presentation of small fiber neuropathy, but none of the specialists would even consider it. They would freak out if I brought them an article from a medical journal. I and went to multiple neurologists and had tens of thousands of dollars in unnecessary tests. I was often laughed at, mocked, shamed by people who were supposed to help me. I finally got fed up and stopped seeing doctors for several months and my symptoms progressed to the point that I ended up passing out on the kitchen floor. Even then I refused to go to another doctor and have someone tell me that I was just another hysterical young female.

    The next day I ordered my medical records and took at chance with a neuromuscular specialist at the Cleveland Clinic who finally heard me out and agreed to order the appropriate tests that confirmed that I had small fiber neuropathy.

    From now on when I see a new doctor I tell them this story so that I am sure that they understand that I am an informed patient and I also let them know that I don’t expect them to fix all my problems or know everything. I have found that most doctors respond very well to this.

    What was frustrating is when I was undiagnosed and desperately in need or respect, guidance, and cooperation. It was then that doctors were afraid of me and when I saw that fear it drove me further into despair and depression. I found that the sicker I was, the less support I got from friends, family, and physicians. Can you imagine that terrible feeling? To be given the message that your body failing makes you unworthy of love support and kindness? My future looked bleak indeed, and for a while I even considered suicide. It is sad that some of the most desperate people who get some of the worst treatment by the medical profession.

    When dealing with the undiagnosed and complex patients, this is the most important time for doctors to lower their ego because the ego blocks the doctor from thinking in a method that is needed needed to help the patient. The neurologists I saw were skilled and smart enough to diagnose me, but because they were unable to admit that they did not know everything, they failed. Their mind was closed and they could not consider the possibility that they needed to expand their knowledge in order to diagnose me and they could not consider that a young woman with no medical training might have already found the answer. There are times when the doctors ego is priority number one and patients health priority number two.

    I think that in order to move forward in improving doctor-patient relationships, we have to get away from magical thinking. Patients need to figure out that doctors don’t have a magic wand or magic pill, and doctors need to set realistic expectations for the patient in terms of what modern medicine is capable of. I think doctors eagerness to impress patients has resulted in many patient safety issues such as over prescribing antibiotics and over use of CT scans. I have personally seen patients throw a tantrum because he doctor refused to prescribe antibiotics for a cold. Patients need to take responsibility too. They need to accept that what they want is not always possible.

    Instead of fearing being stripped of the medical god title, I think doctors and patients should embrace it. Both doctors and patients need to accept the limits of modern medical science because when that happens, I think that health care will improve Doctors will stop being afraid to embrace new knowledge, and patients will stop demanding that their lives be improved though inappropriate treatments.

  197. Dr. Rob, You are right. I know that Dr.s’ are human and want to be treated with respect, calm and admiration. In the beginning of my illness, I really thought that a Dr. could cure me with traditional Western methods. I thought, this will end right? It is just a round of some sort of drug, some physio etc. and then I will be better and get on with my life. My injury happened with the birth of my second child, an epidural gone wrong, she turned 7 this June.
    I have had some amazing Dr.s. and some crappy ones. My pain specialist and former GP gave me the one thing I needed, HOPE. They didn’t want to give up on me and still worked to find a solution to my pain and to manage it while I have it. Going into those offices and not being treated like a Drug Seeking Crazy Addict, made the world of difference.

    I have Neuropathic Pain, so you can’t see it on a test (MRI, CT etc.), so if you can’t see a tumour, disc herniation or obvious injury, I don’t make sense. I get that it is frightening and overwhelming for a Dr. but that does not give them the right to treat us, sometimes, with disgusting dismissal.

    Recently, I was told by a Dr. that he was going on Vacation, so how was he going to manage my meds. He said, “I thought you were temporary, I would have to see you once a month and I simply don’t have time for a patient like you.” My jaw almost dropped to the ground. He took my case a year ago, when my regular GP left her practice. My response to him was “I am not sure what you thought was temporary. This happened in 2003.”

    Does he not see, that on a BASIC HUMAN LEVEL, his absences affect the ability for me to care for my children. His dismissal affects my ability to have any quality of life. How can someone who takes an Oath to do no harm, say something like that? I am disposable to him. He receives his payment from our Gov’t to have me as a patient. However, I am basically paying for his vacation time. Why treat someone like me who is going to cost him money and impinge on his “me” time.

    With a shortage of GPs’ in Canada, and now with a different payment structure. Nobody wants someone like me. So where do we go?

    My childhood GP made housecalls, and this guy wants vacation more than patients? Why did he become a Dr.?

    Don’t mean to sound like a whiny child, but what about me???? What about my husband??? What about my children??? Are we all an intrusion on his “me” time?

    You have no idea how very, so very much, it means for a Dr. to say “How are you?” with real empathy and kindness. Many times that is all we need. We have so many people that ignore, don’t get us, abandon us; what do we do when we can’t have our Dr.s?

    I wish that most Dr.s would read your letter, but maybe we should have a patient letter too?

    Sometimes all we need in return is what you said in this letter “I know it sucks and I want to help, let’s keep trying until we get there.”

  198. I have to say in defense of Rachels’ rant. I didn’t take it as her calling Dr. Rob out or his staff. I took it as a “to all you jackass dr.s and staff out there”. The problem is for us, it isn’t that easy to get another Dr. It is alot of work. Some of us are exhausted by the end of the day, just by existing. Now we have to take responsbility for all of our medical records, appts, meds, research etc. We are tired, so very tired and although what you said is the reality of our situation, it still makes us mad.
    Our condition consumes us whole, so to add on another search, another dr. visit, another test, another med, another appt. It makes us angry. We are spending money hand over fist, waiting in rooms that are painful to do (sitting in an office for 2 hours is very, very hard). We get angry. So, I think Rachel is just venting her frustration in General. It was a rant for those that don’t care about us.

    B/C my pain specialist has snuck me in for emergancy visits, and he takes so much time for me in every visit, I don’t mind waiting for an hour. I know, that when I go there, he will be 1 hour late. However, just in case he isn’t, I am on time. B/C that isn’t just a case of his time being valuable and mine, but maybe the patient that he snuck in to give a result to, or who needed meds or who needed a shoulder to cry on.

    I know Rachels anger, I feel it too. There are times when I want to smash something, I am so angry. It is a sad day in the medical profession when we are surprised when we get seen on time, treated with dignity and respect and by someone who actually gives a good God damn how we are. So, don’t take offense to Rachel, she, like me, is just generally mad.

  199. There is a systems solution for some of the problems faced by people with chronic conditions: the medical home concept. If you have a doctor who has gotten on-board with the medical home concept, s/he will be accessible 24/7, you will be triaged in a way that acknowledges your condition/needs, you will have a team approach with all team members reporting back to one another. Best case scenario, a care coordinator (often a nurse, a CNS or nurse practitioner) will coordinate all the issues and team members and documentation. They will work from a plan of care aimed at your individual needs relative to your condition. Family will be included. You will be instrumental in designing the plan of care and will be considered a team member on equal footing with docs, specialists, pharmacy, therapists, etc. The American Academy of Pediatrics recommended this long ago (was it 1994?), and PCPs have picked up on this concept as much as or moreso than pediatricians across the country. ASK YOUR DOC IF S/HE CAN PROVIDE YOU A “MEDICAL HOME” AND SEE WHAT S/HE SAYS.

  200. Rob, your post and all the responses prompted me to be more thoughtful as I visited my PCP this week. This is a new doc for me in that I don’t go to the doc regularly and I have only seen him once on an initial visit–a year and a half ago. I didn’t think that visit went real well, so I resolved to start fresh with some of the ideas in your post and in the responses. I put together my own “history and physical” with background and lifestyle issues included. I typed it neatly. Though it came to three pages, I made it readable by giving two lines to each issue, and highlighting key words or facts or numbers, such as vital statistics, height, weight, pulse, blood pressure, etc. You know, the way you’d compose your resume or curriculum vitae. I could see that the doc was going to cover everything in my history and physical, everything that I had typed. This alone made me feel good–that he was able to ask good triage questions and bring up the most important issues based on my age. He also remembered that first and only visit one and a half years ago–and that made me feel he had prepared for the visit or actually remembered me! So we did start afresh to build a relationship. I made it a point to be polite and I smiled and he responded in kind. A wise crack got me a wise crack in return. At one point when I refused a med he suggested, he said “I won’t argue with you . . . . .” and that made me feel good about the relationship-building as well. I told him I planned to do something risky as a part of my hobby–he said “Practice before you actually do that”. He didn’t try to take the decision out of my hands. All in all, a very good visit. I want to thank Rob and all you who wrote–you really helped me to do the give-and-take thing with my PCP.

  201. This is great! I find that approach, including the preparation, works everytime. And if it doesn’t I pause proceedings till I get the response I need. When I was pregnant I went into a consulstant ObGyn for the first time. He didn’t even look up from his papers, just gestured to the couch and asked me to undress so he could examine me.
    I just stood there without moving. Eventually since I wasn’t doing as he asked he looked up. When he met my eyes I said, ‘Hi, I’m Sophie. What is your name’ and I held out my hand.

    He completely apologised for his manner. He said he was exhausted but that it was no excuse. We got on well after that.

  202. Yes to both of you! Thank you for the stories! These are prime examples of how if you treat doctors differently, they actually may act differently. I don’t defend the OB for being gruff – he apologized for doing so, and he should have apologized – but “a gentle word turns away anger.”
    This makes me glad that I blog. Thank you both.

  203. Hi, Elizabeth (and everyone else living with chronic illness). I am quite intrigued by this discussion, as I am in my second year of medical school studying naturopathic medicine. I find Dr. Rob’s post to be interesting because it reflects the sense that I get from my colleagues in the conventional medical field. I think they are really good at dealing with acute illness and certainly at addressing symptoms, but sometimes they don’t have the time or the training to really get to the cause of illness — followed by cure (sometimes due to choice, more often not). In my first year of school, we have learned a lot about chronic illness. In fact, this really seems to be where NDs (naturopathic physicians) excel. Your story resonated because I hear all the time in school about people in similar situations: experiencing all of the symptoms of a particular disease, but no test results that support that diagnosis. Oftentimes, NDs go more on the patient’s experience than on a diagnosis. In fact, for this reason, many NDs do not accept insurance (either because they are not covered if they work in unlicensed states or because they don’t want their hands tied with ICD9 codes and so on). NDs are fully trained primary care doctors who seek to provide life-long care to you and your family, so the idea of taking a lot of time to work closely with someone surviving a chronic illness is not a thing to be feared. I have heard many stories of people suffering for years from rheumatoid arthritis (with and without supportive test results), people reliant on canes and pain medications to make it through the day — people who are willing to work with a naturopath who maybe figures out the root of such systemic inflammation. I’ve heard stories of people no longer needing pain medications after learning that they are allergic or sensitive to some food that their body cannot digest. Remove the food, lose the inflammation, cure the chronic illness.
    Certainly there are many many factors involved in chronic illness and perhaps I am just as naive (or more so) as a poster below who still feels hope. I just read these posts and they break my heart, but they also inform my future practice. I believe there are MDs out there who are not afraid of chronic illness and who believe that it is not all in your head. But I KNOW that there are NDs out there who will listen, strive to understand, take the time to get the whole picture, and maybe even be able to work with you to the point of cure and true health.

    I wish everyone on this blog the best.

    I think Elizabeth Kaylene says it best: *hugs*

  204. Thanks for your input! I don’t have a problem “going outside the mainstream” to try to alleviate my difficulties. However, the problem arises when “many NDs do not accept insurance”. I’m on disability, and with my husband’s income we’re barely making ends meet. You may be telling the gospel truth about how NDs excel at treating patients with chronic disease–but if you don’t/won’t take insurance, I”ll never find out!

  205. Nightshade — You are absolutely correct and it is certainly one of the many points of debate within the community. The insurance question depends on the state, the insurance company, and the provider. I live in Washington State where NDs are fully licensed as primary care physicians and virtually every insurance company (national and local) fully covers them as such. As we have one of the few accredited programs in the world here in WA, there are many many NDs to choose from so it is easy to find providers who take whatever insurance a person has. But it does depend on your state. If your state does not recognize naturopaths as licensed physicians, you would obviously not be able to get insurance to cover it. However, the potential upside of this is that NDs do not need to play the insurance game and many (if not most) offer sliding scale options. Depending on your situation and your interest-level, it may just be something to look into.
    I will say adamantly, though, that if you are interested in looking into and maybe even making an appointment with a naturopath, be sure that they have been graduated from an accredited program in the US (preferably) or Canada. There are only 7 programs in North America that educate to the level of physician. Particularly in unlicensed states, there are people who claim the degree that have no schooling. Just to give you a heads up, you’re looking for people to say they are graduates of Bastyr University (WA), National College of Naturopathic Medicine (OR), Southwest College of Natural Medicine (AZ), University of Bridgeport (CT), or National University of Health Sciences (IL). There are two programs in Canada as well (Boucher Institute and Canadian College of NM).

    And, regardless, do follow Dr. Rob’s advice to not go back unless you feel comfortable with the person. The healing RELATIONSHIP is a very powerful thing. (I know a lot of NDs who set up an initial 15 minute visit for free just to see if you get along. I think it’s a great idea and hope to do that one day.)

  206. Yay, how enlightening to read your thoughts on this! As a pretty typical “doctors nightmare” – a professional patient with 15 years experience and a journal heavy enough to kill an unsuspecting bystander, I know that worried look that doctors often get when I enter the room. In my early days as a patient it used to make me avoid them as much as possible, now I understand why that’s not a good strategy… (thank you for saying what nobody ever told me, it took me years to guess!!)
    I think my last comment got lost in here somewhere, a few weeks ago I tried to ask if I could repost your advice on my patient blog “365 pain-free days”, but the internet goblins must have gobbled up my question. I see in the previous comments you have said “Go right ahead, the more who read it the better” but I don’t know if you’ll agree to the way I’ve had to break up your advice to patients in order to fit my blog-format (one per post)… so just letting you know: If you don’t like it I’ll change it! Of course I’ve credited and backlinked every post.

    Oh, and thank you for doing your best to “decrease the suckishness” that is chronic disease, I’m with you on that one!

  207. Please do. Many have written about it and put in their comments. The creative commons license for my writing allows for reproduction as long as there is citation. I am glad you got something out of the post.

  208. […] A Letter to Patients With Chronic Disease excellent 'open letter' from a Drs perspective, 'reaching out' But In a Good Way, to patients with chronic diseases. Post has evoked substantial traffic in comments – Good stuff (tags: healthcare patients engagement) […]

  209. Dr. Rob, I am late in responding since I just discovered this wonderful post. You wrote this letter with wisdom, humor and raw honesty … it really resonated with me.
    I am going to send the link to my doctor (who happens to be one of the good guys — after several years I finally figured out how to avoid the jerky ones and find the ones who don’t suck :-)).


  210. Oh my aching head!

    Try having a few chronic illnesses and Bipolar Disease. Doctors treat me with some modicum of respect as I go through my surgical history, my 35 years of diabetes, and meds until I get down to the Lamictal I take as a mood stabilizer. Once they hear that, the dynamic shifts, and they treat me differently.
    I was at the ER a few months ago, with a Migraine that didn’t respond to any of the meds I took at home. I was lethargic, throwing up, and wanted to go asleep to escape the pain. I went through the list of my meds, and mentioned that the Lamictal was on board for Bipolar. The nurse left, and two minutes later, 2 security guards were poted outside my bed. I went in for a non-psychiatric event, was practically doubled over with pain, vomitting everywhere, and all of a sudden I was a threat to myself and others, by virtue of my well controlled, properly medicated Bipolar illness.

  211. All I can say is “AMEN.” So well said. SO well said. It’s like you took the words out of my mouth and put them into writing.

  212. […] “But chronic unsolvable disease stands square in our way.  You don’t get better, and it makes many of us frustrated, and it makes some of us mad at you.  We don’t want to face things we can’t fix because it shows our limits.  We want the miraculous, and you deny us that chance.” http://distractible.org/2010/07/14/a-letter-to-patients-with-chronic-disease […]

  213. Wow what an amazing perspective from one whom you’d at least expect it from … The Physician. While it is true that all doctors aren’t the same but most of them make it hard to believe the very few with a heart truly care, but yes there are a few who do yet they are truly hard to find. Than you much Dr. Rob for telling the story from that side of the desk. Many times when visiting the doc after sitting for hours in severe pain you fight within yourself to be as humble and poliet as you can to be humble when most times you want to make good use of a peice of 2 by 4 and knock the heartless being out of field. Most times docs are hoping you are and depend on your ignorance but when you show up thier ignorance by your profound knowledge of your case, etc. they tend to push you off. How unfortunate but then I suppose if you ask a man/ woman a question continously they stutter at they find it easier to back off than making the further attempt to research to understand. Then you ask them if they will be willing to read a little info by way of email that will possibly help them help you make the best decisions and he promises to respond but then you relize he never intended to. As if that isn’t an insult enough then you have his nurse swearing for him that he is too busy, like heck ya tink? So is my Bank Manager and other Government Officials but they respond to my emails, etc. What I wonder …. could it be a lack of respect or is it just a lack or what??
    Nevertheless, thanks for the letter Dr. Rob …… I would still like you to come sit in with me on my next doc visit.


  214. I’ve spent some time reading through this post, and the two posted as follow up. As a medic myself (Obs/Gyn) I have experienced much of what you describe here at some time or other in clinical practice. Where it particularly rings true for me though is in my experiences as a patient as these days I find myself catapulted into the middle of a chronic illness. As a direct result I have given a lot of thought about the way I interact with patients and communicate with colleagues. Increasingly, my first point of call is my GP. There are so many other specialist clinicians involved that I even find myself losing track – and perspective! – and I am immensely grateful for how well she keeps up to date with what they are all planning and suggesting. For this reason, keeping bang up to date with correspondence with the GPs of my own patients has become a particular focus of mine. Great post Dr Rob; spot on – on both sides.

  215. Just wondering, Rob…would you agree with the fact that there are also two EXPERTS in the exam room, both of who should recognize the experience and expertise of the other?

  216. wow, dr. rob, you certainly know how to open up a can of worms! i certainly appreciate this article and your perspective as a doctor. i, myself, am a chronic illness patient for 23 years, the first 5 of which i was misdiagnosed and finally told i was a hypochondriac, only to be properly diagnosed at 17 by a specialist my mother fought tooth and nail to get a referral to. while i have not read all the comments, i have been able to relate to many of them as i have been through a great spectrum of diagnoses, great doctors, apathetic doctors, toxic doctors, insurance, no insurance, hmo’s, ppo’s, rollercoaster of emotions, different levels of assertiveness, mistrust in doctors leading to a five year absence from doctors(big mistake! even considering the fear that lead to it), medication, no medication, good staff, bad staff, i have been made to feel small, ignored, yelled at, intimidated, called stupid, made to cry, humiliated, but i have also been heard and understood…and the list goes on. i have experienced both the good and bad a lot of these people have experienced. i also do very much recognize that dr’s are human. i also understand that doctors are scientists who are learning more every day about their specialty and they don’t have all the answers. i get that, and good doctors are honest about that and don’t put their frustrations on the patient. i understand doctors have families that miss them when they work 14+ hrs a day. i understand that doctors are responsible for an entire staff that relies on them for employment, benefits, trust, work ethic.
    i am at a point in my life where i enter each new doctor’s office with a clean slate and i rarely judge a doctor by the first visit, i am always hopeful she/he will become a trusted partner, but i know i don’t always make the best decisions for myself, as i do carry around 20+ of medical baggage, mostly in not trusting my own gut feelings about bad doctors and about not completely trusting good doctors. i come to the first appointment prepared with medications and medical history and generally let the doctor set the tone for the first visit. upon subsequent visits, i begin to speak up and respectfully ask more questions, this is when the doctor and i really begin to get to know each other. it can be exhausting and frightening. i have come to terms with the idea that life is inherently dangerous and not one of us is guaranteed any time or good health. life is not fair, but that doesn’t give doctors license to be toxic or malicious which i know is not what you are saying here. in the end, we are responsible for ourselves, our choices, our actions and the rest is out of our control. i can totally relate to the frustration, fear, desperation and anger a lot of these patients feel and we have every right to feel that way. but we don’t have the right to treat others poorly or blame someone else for our illness, it is the cost of living in our bodies and our burden to bear alone. at the very best i can hope for an honest, respectful, patient doctor to help me manage my pain, symptoms and illness in general and in return i must also be honest, respectful and patient. as time goes forward, advances in medicine are constantly progressing in drugs, therapies, diagnosis, cures, causes…whatever. those things are great and wonderful and i will happily use them for my own selfish gains to being pain free, but no one owes me anything. i would certainly appreciate timeliness as my time is important and the full attention during my sometimes 2.5 minutes with the doctor as i have been patiently waiting and paying for that service.

    all that said, it really isn’t that easy to find a good doctor and then to learn to trust that person with your life. even after all these years, i have not figured out the formula to talking with my doctor. first off, i don’t have much trust, secondly, each individual wants/needs/tolerates a different amount of questioning and interacting. when one is not by nature assertive and hates confrontation, finding that line, or more specifically crossing that line, can be quite intimidating and/or humiliating. there have been a few excellent doctors in my time that all others have had the unfortunate distinction of not measuring up to, and i will always treasure those individuals.

  217. I really identify with this blog. I have a chronic condition, as does my husband and both of our kids. We have had many more visits with docs than we ever expected, particularly over the past decade. Like the old saying, we do catch more flies with honey than vinegar and have a great medical team of docs whom we work well together with to stay as strong and healthy as possible.How can I get permission to reprint this blog for our newsletter and also to share it with our support group? I think it’s a great piece to provoke useful discussion. I notice that I have much more productive medical visits when I prepare as much as I can ahead of time, summarizing results and any changes since my last visit, etc. It saves all of us time and backtracking so we can focus on the most urgent issues efficiently.

  218. Reading these comments and your letter, I know I am blessed. I was diagnosed with Fibromyalgia in 1999 by a Rheumatologist. He told me that I had a chronic pain disease and I would have it for life. There was nothing to be done so go home. Shortly after that a business aquaintance sent me a newspaper article about a Doctor who helped a President of a local bank who had the same thing. I called this Doctoer and he had a 3 month waiting list, he worked late hours and still could not keep up with everyone who needed him. When I went to see him I knew why. He was so knowledgeable and treated me like a person who had a problem that could be helped. He undersood because his wife had it as well. He was funny and uplifting, he gave me hope that I would function again. He writes everything down when we talk. He diagrams the part of the brain and body that we are discussing. He explains the medications and gives options. You are so right about long term relationship. Because of this, he was able to help when my husband became very ill and I was needing help and not sleeping wel. He helped me through my breast cancer. He communicates with my personal physician and my oncologist so they can work as a team. I have no idea what my life would be like without him. He makes you feel like you are a partner in your care. I am so sorry for those that suffer through chronic pain without this kind of help.

  219. I’m a Pediatric OT (kids with physical disabilities birht-21) working for the public health system, and I appreciate your post Dr. Rob. I also appreciate many of the responses. I have some of my own health issues including TMJs at the bone on bone stage & I’m a breast cancer survivor. I have a migraine disorder that, thank You God, responds to medication. My neurologist IS just my medication pusher because that’s HIS choice.I’ve had some excellent medical & dental care, & some less than stellar care.
    We need tort reform & we need insurance reform.
    I realize you aren’t all in it for the money Dr. Rob, but some doctors definitely are. Yes, the insurance companies don’t reimburse much of what physicians charge, but some of those charges are too high IMO. Yes, to have a medical practice doctors have many expenses, but I think some of those charges are unreasonable.
    Many other professionals go to school for long periods of time. Many other professionals have education debt. And we participate in continuing education – mandatory & just to learn.
    It’s true our malpractice is not nearly as high as that of a surgeon and we aren’t sued nearly as often. Some lawsuits are legitimate and others are not. Patients should only sue when it’s really mal(bad)practice. Etc, etc.
    And I feel for the Residents because it is not good for anyone that they should have to work so many hours. Less demanding, more humane training should = more reasonable, better, less greedy physician care.
    The whole system needs revamping.

    Personally, I don’t like working with doctors. I find doctors don’t really listen & don’t have conversations. Orthopedic surgeons are the worst. They claim to be looking to increase “function” but it’s nothing we can discuss. They’re always right & we (the therapists) are always wrong.
    And our “over-Botoxing” physiatrist is now adopting that attitude as well. As a professional I’m supposed to speak to them like a patient also – “gee Dr. C, I’ve been working with this client 2x/week for 6 months but I have no ideas about what to do next. Oh great godly physician, please tell me what you recommend because I can’t possibly have a recommendation of my own…”. I can’t just say, “you know, maybe if we just Botox the elbow flexors and see what happens in the rest of the arm I can get better wrist extension & hand use.”. Nope, then it wouldn’t be HIS idea and he might actually learn something (like maybe he shouldn’t always put Botox in the entire arm because stability strategies might be effecting this too). Nope, “stability strategies” can’t be real because: 1) it might not be researched enough, 2) if I’m saying it and I haven’t published a paper & don’t have a PhD I can’t be correct, 3) he doesn’t really understand what stability strategies are.
    But he’s the doctor so he’s in charge. But when the Botox doesn’t work well enough then, per the doctor, either the parent didn’t stretch the arm enough (he thinks parents actually have time to stretch their children before school) or I didn’t give enough therapy.

    Anyway…..all the systems in Southern CA (& probably the whole US) are overloaded. The children’s hospital is filled with families from 3rd world countries, many of whom are here illegally. I feel for them that they can’t get good medical care in their countries but we can’t support them all. Personally I treat them with the same respect as anyone else, but it can be frustrating.
    I think the public doctors like treating them because they don’t sue as much as citizens do. And many don’t ask questions like you or I would because they are uneducated. Therefore, they are “ideal” patients as long as there are interpreters/translators. The doctors really don’t want long explanations anyway. They want the “in and out, I did a great job and you won’t sue me” routine. And “I’m helping the 3rd world right here at home so look at how great a human being I am!”
    One of our academic medical centers no longer contracts with my PPO as an “in network” provider. They still take Medicare & Medicaid (which I think they should), but then again every poor child born to an illegal alien is eligible for Medicaid in CA. They don’t make enough money off of my insurance so I have to pay more because, essentially, I’m a non-Hispanic who “can afford it”. So I don’t think I’m the one being discriminatory.

    Now getting back to the point:
    Much of my caseload is Spanish speaking and I have no desire to become fluent – nor should I have to. Personally I think it’s up to them to learn to speak English (& there are free classes). And many of my 3rd world families can’t really answer my questions in any language because of their culture & lack of education. I really try to find out what’s going on but I have to ask questions 3-5x just to get a response in many cases.
    I much prefer it when a family ACCEPTS their child’s disability, works with their child, & can give me feedback (in English). Then I can work with them to maximize potential. I like teaching families. I like seeing the children succeed when they can.
    It does make things harder when a parent heard things or read things & wants to know why this won’t work, or why doesn’t the public health system pay for this – “I want this & I want the system to pay for it!!” Sometimes parents are right about fighting the system, & sometimes they are wrong. Sometimes parents spend money on attorneys INSTEAD of paying for special equipment or services – for them it is about the fight.
    What we need to try to avoid is “the fight”. We need to have reasonable discussions with reasonable expectations. It can be very overwhelming for parents of children with disabilities, just like it is for adults with chronic conditions/disability/pain. And we as professsionals need to recognize that & be understanding. But everything a client/patient reads on the internet or hears from a friend is not correct, & they need to try to calm down a little.
    I personally don’t read the research because I go more off of anecdotal evidence. And for research it is important that the studies be designed well or it really doesn’t matter what the outcomes say. And each child’s case is different. And in my field there isn’t much research anyway. It’s much more anecdotal.

    I think it’s great when a family is organized. My medical history is now complicated so I will often give my doctors some well organized word processed history – and they should appreciate it but often don’t. I’m not telling them what to do, I’m giving them something to refer to. Physician’s should appreciate this but I guess they don’t feel they need my help.
    We as health professionals ALWAYS need YOUR HELP in terms of getting the history correct. We always need feedback about whether what we are doing WITH you is helping.

    So….I guess I’ll end my long winded ramble here.
    I’m a Hebrew Christian and I believe God is in control (although it doesn’t always feel that way). I think if more doctors & other health professionals would give G0d credit we’d all do a better job. And if patients/clients could believe in God, and find help from God believing and God fearing professionals we’d all be happier.
    (and I hope I didn’t come across as being “3rd world hating” – I was just trying to give an example of another thing that is really stressing the system &, IMO, adversely affecting care for all)

  220. Thank you Dr. Rob for being honest! I wish more doctors were honest. “I’m not familiar with your disease, I know what it is, but I’ve not dealt with it before.” would be very welcome at a first visit.
    I always try to remember that doctor’s are ‘practicing medicine’, this helps me to not get frustrated quite so much.


  221. I was thinking of printing this & giving it to my various Drs in the UK who i see on a far too regular basis

  222. I’m a first-time reader and I am very impressed with your comments.
    My YOPD doc, my neuro-surgeon and my G.P. are, quite literally, my best friends. We have been a tean for years, and when I say “team” that is exactly what I mean.

    They expect me to have read up and sought out information regarding my conditions. They appreciate when I bring up something I’ve read and we have a discussion (some more lively than others!) about the pros and cons. They EXPECT me to question, to seek knowledge and to yearn to understand what is happening to me and around me with regard to my condition….they are also not shy about telling me when I’m being silly or self-pitying when I need it (and when I can handle it!)

    Thank you, Dr. Rob, for writing an article that really expresses what a true doctor/patient partnership should be. I;m lucky, I have exactly that!


  223. Thanks for this, it is quite enlightening to see the other side.
    I have brittle type 1 diabetes with insulin resistance and poly cystic ovary syndrome thrown in, and chronic pain that makes me unable to sit or stand for more than 20 minutes. Needless to say from that list, I’ve seen my share of good and bad doctors.

    Recently I have become disheartened by the reality that even the really good doctors that have saved me in the past have begun to react back at me and treat me differently to the way that have in the past. I think your blog goes a long way to explaining this — I threaten the doctors that pride themselves on fixing the unfixable patients simply by not getting better. This is despite the fact that I have done everything imaginable to do so, and coped through things that most people don’t imagine they could with relative ease (there seems to be this dichotomy with the treatment of chronic illness that it either causes depression or doesn’t, when for a lot of people like me, I don’t think I have depression, but I still think I need support).

    I was interested about your comment that patients see doctors intermittently but doctors are doctors all the time (although personally I am starting to feel like I live in a doctors surgery:p). Personally I had been thinking the opposite — that my problems, and the accommodations that they require (for examples that I can’t sit down in the waiting room, and this is not because I am crazy, overreacting, or stupid), our only with a Dr for a short moment, while I take them home with me and are awake till 5 AM with them.

    At the same time, I don’t expect my doctors to be miserable just because I am suffering. I want respect and understanding, as I am sure a doctor like yourself would give, but I don’t want you to take my problems home with you mentally.

    One more point, in terms of the knowledge thing, generally I have been far too timid to take journal articles and questions about new research and treatments to my doctors because I know that many of them feel intimidated by this. I also find the problem that because I see a number of different kinds of doctors, I can get caught in a tug-of-war between them when treatment for one area of my health involves treating another area of my health. I would rather not be blamed for the fact that my endocrinologist and neurologist disagree. it has reached the point where I have developed a fear of going to doctors, and get insomnia the night before appointments.

    Thanks again, great blog!

  224. David, my husband, has chronic disease. I am my husband’s advocate. Our experiences with the health industry has sometimes been shattering. After dealing with doctors for 5 years, I can say this article is sane, and does offer sound advise. It takes tremendous effort and stamina (intellectual, psychological and social) to make sure you’re getting the best care that you possibly can for yourself or someone you love. It’s tough going. Rarely, if ever, is there a magic bullet.

  225. I stumbled upon your article while looking at potential questions to ask a doctor. I wanted to be prepared for my upcoming visit to a new PCP.
    Needless to say, many of your thoughts and the comments of others have triggered multiple memories and responses from me. Many are related to the very painful personal odyssey I have been on; and others are related to having been in private practice as a Ph.D. licensed counselor. I went back and forth as I read your work mentally reacting and vacillating as if you and others were either “blaming the victim” and/or “speaking your truth.”

    While working in private practice, I held myself to very high ethical and professional standards. Most patients I saw were not, by nature, demanding or abusive to others. Many, however, were at the very end of their rope from seriously deficient physical and psychological care. Really good care took care of them and their reactions to treatment.

    Personally, I am hoping that I am close to the end of the road on my diagnosis journey. I have 3 chronic RARE diseases, two of which I evidently had all of my life.

    It is true that these 3 rare conditions are manageable conditions that often require personal discipline and special knowledge on my end. One very important factor that many doctors ignore is my need to prevent taking any medication, test or treatment that could make my conditions worse. Despite my politeness, this caused me to be fired from one doctor’s office. Sometimes, a patient’s input can mean life or death for them.

    The second time resulted from the very bad behavior of the doctor’s office staff. I know that, like my profession, doctors work with their doors closed. This leaves your office staff quite a bit of freedom to behave in any manner that suits them. So, before you assume that a patient has been abusive, check out your office procedure for glitches, and your staff for closet sadists.

    The most recent is by mutual agreement due to my complicated needs and his unwillingness to learn about these conditions. I copied an article and summarized it with bullet points to make things easier. He wouldn’t read it.

    And by the way, during my medical journey, I handed each physician my cancer aftercare plan. No one read it. Some briefly glanced at it and handed it back to me. Proper medical practice requires that a physician digest information and use such information for the betterment of their patient.

    In closing, my bottom line response to your sentiments is slightly harsh. So what if a doctor has feelings about my conditions? Deal with it! He or she chose to be a doctor; now grow up. A doctor try to be their very best selves.

    Medical standards do not include judging, blaming and neglecting proper protocol.

  226. When I was having financial difficulties because my insurance company doubled my copays and I had 3 doctors’ appointments in the span of two weeks, and one was to get test results from my urologist, I called and nicely explained my situation to my urologist’s nurse. I asked her if there was any way I could just get the results over the phone, but if the doctor really needed me to come in, I would. Shortly thereafter I got a letter in the mail – the doctor discharging me from his care because I was unwilling to come in to see him. Uhhh. I never said that at all. I called my doctor’s office in tears, asking the nurse, what the heck??? Where did THAT come from??? Got it worked out, because he’s the only urologist to see, but that was just uncalled-for. So yeah, I’m tired and pissed off. And then the doctors look at you like, what could you possibly be depressed about?

  227. One thing I have learned from reading the doctors’ reports from my charts is never – I repeat, NEVER – cry in front of the doctor, because you will automatically be written off as depressed and in need of psychiatric care, and you will never get another minute of interest from the doctor. It doesn’t matter **how much pain you’re in**, how frustrated you are, how angry you are, how lonely you feel, how disrespected you feel, how dismissed you feel, how scared you are (“How will I work? How will I take care of my kids? Will I end up homeless?”), how beaten up by doctors and this thing in your body you are, NEVER cry. Which I think is so sad.
    But I’m not crying about it. I’ve learned to just be numb and simmering with varying degrees of anger and fear.

    I am blessed, however, with the kindest, sweetest ENT surgeon/person you could ever meet, and if I could clone him into all the specialties I need, I would. I trust him implicitly, even though he likely caused a small tear in the dura between my front sinuses and my brain during my second sinus surgery. It’s almost like he’s from a parallel *KIND AND COMPETENT* planet. I would walk to the ends of the earth for him. I could count on two fingers the number of times he’s been marginally impatient with me since I met him two years ago.

  228. I saw a doctor in urgent care for some excruciating deep bone pain in my lower left ribs that I’d been dealing with for a while (measured in months), but the pain had broken through to a level I was unable to manage, even with my pain meds. Now mind you, I was not writhing in agony on the floor, I was not screaming in pain, but yeah, on a scale of 1 to 10, this was an 8 or so. I’ve been in back labor for 15 hours. I was hallucinating from the pain. Since then, I’ve had a spinal headache from a tear in the dura from a lumbar puncture. The mother of all headaches. I know pain. I rarely writhe.
    He walked in the room and didn’t even make eye contact with me. Then he tried to prescribe a lidocaine patch. The pain was deep in my bones. A lidocaine patch? I was not receptive. He left the room.

    He wrote in his report that I was the most arrogant patient he had ever had, and I didn’t look like I was in pain. Well, how would you know, since you never once made eye contact with me, never once looked at my face? I may have been the most arrogant patient he’s ever had, but I thought he was a moron. It’s only fair, I guess.

    Since then, the only thing that has helped this freak bone pain (that area on that side of my ribs is actually kind of deformed) is a nerve block again, and it’s getting to be time for another one. I lasted a little over a year. And then 6 more months of pain. Pretty good. Now I have to go see the pain specialist for the nerve block again, who insists I come off the 0.5mg of Xanax (have been on this for years – this is a very low dose – I haven’t needed to increase my dose in 5 years) to help me sleep because of my fibromyalgia, but who is more than happy to throw methadone at me for pain control. I’m far more likely to die from methadone than I am from 0.5mg of Xanax, but he does give me the blessed nerve block, and he’s really, really good at it.

    Huh, I’m so arrogant, but my ENT surgeon – a saint of a man, and without peer – thinks I have an EXCELLENT attitude for someone with my health issues (including common variable immune deficiency – newly diagnosed and the reason for all those unremitting sinus infections and multiple sinus surgeries). He tells me I’m always in such a great mood. Maybe because I’m dealing with such a wonderful doctor who cares.

  229. I probably would have said to the snarky ER PA (if it were me personally), “Quite possibly. I know I’ll be giving myself infusions of immunoglobulin twice a week for the rest of my life, or at least until I have no more insurance.” Actually, I can’t stand taking pain meds. I hate feeling wasted. I hate being constipated. I hate not being able to drive. Hate it, hate it. But sometimes, when faced with a choice between a certain level of pain and being wasted, being wasted looks pretty good.

  230. My immunologist – the only one in my medical group – threatens to wash his hands of my care for my newly diagnosed CVID whenever I discuss alternatives with him. I’ve decided that the next time this doctor does this, I will tell him fine, but I am reporting him to the medical director of the group, because this is medical bullying.
    I am at the point where a shortened lifespan so I don’t have to keep dealing with this is looking kind of attractive. And yeah, I’ve told my therapist that.

  231. I would rather hear, “I don’t know, but let me refer you to someone I think might be able to help, and I’ll even call them first to let them know what’s going on,” than “Maybe you should see a psychiatrist/therapist/etc.” I’d be a whole lot more receptive to the idea of getting some emotional help if I felt my issues were being dealt with too.
    I went to see a psychiatrist to attack this “hypochondriac” issue head-on. He said no, I wasn’t a hypochondriac, the doctors just hadn’t figured out what was wrong yet. A year or two later, some GI issues. The young doctor told me about the results of the colonscopy/endoscopy (I have a sister with celiac), and I was getting this vibe from him of disgust and like he thought I was a hyponchondriac. I told him I’d seen a psychiatrist, who determined I was not a hypochondriac. This GI doctor looked at me and sniffed, “I’d get a second opinion.” Yes, he did just say that. He oozed disgust. So I did see another psychiatrist for a second opinion. “Uh, no, you’re not a hypochndriac. They just haven’t figured out what’s wrong yet.” Thank you.

  232. Wow, you know the difference between walking into a repair shop and walking into an ER or doctor’s office is that one generally isn’t in pain or feverish or bleeding or feeling like one is having a heart attack when walking into a repair shop. Walking into a doctor’s office probably entails less of the above, and walking into an ER pretty much ensures a high level of it. If a patient can manage to be courteous under those circumstances, that’s pretty awesome (I know I try), but if my pain level is at a 10 and I’m being ignored for two hours while listening to nurse and technicians and doctors have a loud conversation/laugh about their plans for that night or the weekend while I have to pee like a racehorse but have been told I can’t get out of bed, I doubt I’m going to be very courteous. Sounds like you need some in-the-trenches personal experience being on the other side of the white coat. Just the fact that you wrote that shows you really don’t have a clue.

  233. dying of cancer

    The one thing you miss is the “business of medicine” as MD’s sometimes gets in the way of good health care. Whether its using incorrect data supplied by a drug rep, paid by big pharma to “detail studies and drugs” in conferences that really give no overall survival to patients or sheer incompetence, there are other factors which get in the way of “good medicine” Dr. Money, and “disease mongering” led by big pharma, and leveraging Md’s CAN SOMETIMES lead to a lot of suffering and incorrect care! SOMETIMES I SAY!

  234. Calling all people!!!! Please start looking for Dr’s that practice holistic medicine. Modern Dr’s treat the symptoms of disease by using toxic medicine to control them. Think of the many people whose lives have been ruined by bad meds. Modern doctors tend to think inside the box rather than the box inside and out and all the area around. Think about the history of medicine where did it start? Yes people did die from illness back then but many lived. The old folklore you heard of home remedies, think about it. Wish all Drs. could be like Patch Adams…..if you haven’t seen the movie with Robin Williams you must. He bent the rules at medical school and challenged conformity. The medical profession has lost its compassion for the human race. Patch Adams is still a practicing doctor with a huge compassion and understanding for the sick. Things won’t change unless people stop paying for the useless help that many doctors give and seek other alternatives. Why do you think there is a huge movement towards holistic health care? Not all doctors fall into this category, but many of us have encountered enough of them that makes us want to voice an opinion in a negative manner. I have had many good docs but about as many have been just too busy to care because they schedule two patients in one minute and take home a chunk of change.

  235. My daughter is 27 and has just been diagnosed with hypogammaglabullimia (?) and CVID. It has been a war to get a diagnosis but after 17 hospitalizations in 2 years and a multitude of bacteria, viruses, infections, near death experiences, finally we have some answers. She got so tired of hearing “you’re a zebra”, “we thought the candida in you blood was just a fluke the last 4 TIMES YOU WERE HOSPITALIZED”, “some of these infections we have never seen before”. I finally suggested they test her IgG and after 3 weeks of 6000 platelet level, 4 transfusions of platelets they finally complied with the request and there it was. No (0) NK cells, IgG and others. During the 3 weeks we took on chiefs of staff, hospital administrators, resident heads and 4 different teams trying to CYA as to the reason that 6 gram pos. and neg. bacteria’s were instroduced after entering their world class facility. For 10 years she and I have fought this battle and frankly I really am not prepared to sympathize with a medical profession that would rather she die than to frustrate them with a rare disorder that they cannot fix. The answer is not for Dr.’s to be more understood it for Dr’s to think outside the box, be more tenacious and listen.

  236. This is a definite breath of fresh air… To have a doctor act normal, show real feelings and emotions and take it on the chin, so to speak…! I lost faith in British doctors, as they have a certain way about them, that does not allow the patient to get to know them or have mutual respect. I was so disappointed with my doctors and I did try a few different ones, just in case it was the only odd one that had problems of a psychological nature… of course we know you are all human and fallible…! But as patients, we expect to be treated with respect…with thought and with good diagnostic treatment… I also understand this is difficult for doctors as patients are not as knowledgeable and do not know what to say or how to explain themselves well.. so a doctor has several jobs to do for sure… I also understand most people do not know how to communicate with their GP, so therefore that does cause significant problems.I decided to move to France, where most if not all doctors show respect, never act fed up and spend time with a patient as long as the patient needs to get to the bottom of the concern they have. They send you for blood tests and you don’t have to be *their counselor * to work out how to approach then so they don’t feel bad.. You just have an intellectual conversation with them about our symptoms and ask if it is possible or if they feel that maybe having a blood test might determine any overt causes. They immediately do it, or send you for one.. You are also treated with respect by the people who take the test, and they send it to your home the next day in the post.
    They do not hesitate to send you for any test that is deemed to be needed, although they do not have to care about cost.. which is a large problem for doctors in the UK and i imagine other places that are run by government rules dictating what you can or cannot do, spend or cannot spend.
    But I have found that I have had to come miles from my family and friends to get the correct healthcare and also my partner who also has a chronic condition (Multiple Sclerosis). She had to have several relapses and still was being considered for any treatment… Both eyes totally affected later, she now has to live with this and other problems due to lack of at least any thought to having treatment in the UK. She waited 3 months, which is quite a long time to see her neurologist in France, she didn’t have to get the bus or worry about paying for travelling to hospital as it was paid for her and the taxi ambulance made sure she got there on time and brought her back home also showing respect with a smile. She now gets full treatment and can discuss any other new and up and coming treatments with him and not have to worry about speaking to him right.. He accept she is ill, he is there to do a job, he does it. She had an MRI scan, blood tests etc… due to not having any information from the UK of her condition.. so had to start from scratch. She returned home with her prescription and The next day she had her injections and all other medication she needed ….!

    I have the utmost respect for anyone with such powers to express realness and explain that they are just ordinary human beings like everyone else… But they do have a great sense of responsibility, although that is a hard coat to wear 24/7, it was our choice to wear it… People who have such awful diseases don’t have the same choices and hope beyond hope that who they see professionally will give them the treatment they need, be understanding and open to any other available treatments available to them.

    With respect to your honesty, I do give much credit.. If there were more like you, then maybe people might not feel frightened to call on their doctor and wait till the list of symptoms are too long to deal with all at one go, which does make diagnosis difficult i am sure.

    This article will be very helpful to many if not all people, so Thank you for sharing your thoughts as a doctor.
    Kind regards

  237. I’m a 49 year old doctor and I was just diagnosed with a chronic disease which has no effective treatment and no cure. I’ve had to beg to get appropriate care and I have excellent insurance. It is an eye opener to see the health care system from a patient’s perspective. The system is totally broken – I have no idea how patients who are not in the health care field get the care they need. I know when a treatment is wrong/incorrect, I know when a doctor is a jerk and why he/she is acting that way, and I know how to work the system to get what I need (e.g. calling or e-mailing experts in the field to get their opinion and help me get the help I need). I read the medical literature and understand it. I do feel lucky that I have this background as it will probably prolong my life.
    It is refreshing for a doctor to “come clean” about how they feel about patients with chronic disease. I got the same treatment as he described. It’s frustrating for the doctors and they act out in inappropriate manners. However, I do think a little empathy would go a long way. It’s not that hard to try to feel what a patient must be feeling. I know. I am doctor with a lot of compassion for others. Even a “I’m sorry to tell you this about your health but this is what is going on.” I don’t think that’s too hard to do. Nor, is it beyond what I think a doctor should be capable of in his/her daily job of seeing sick patients. The system is designed to harden doctors to not feel other people’s pain. I think it just must have gone too far.

  238. no name,avoiding retaliation

    Every word of the letter to ronocally ill patients,is true,yet surgeons,doctors and nurses still make a wide variety of medical errors,covering those errors up and keepinv them hush hush and denying any wrongdoing.I’ve reported such errors to hospital administratiomsy insurance provider and on surveys sent to me after my procedures. But since interviews found that nothing in the doctot’s dictated or any other records or questioned caregivers gave any indications of … The medical team made me out as a liar. Reporting medical errors has been a denied right,at least in the effort to improvey medical care for 3 cronic conditions. Now I realize medical care is very risky,maybe too risky and there is nothing I can do to insure propper and adequate care for my health at any hospital or doctor’s office. but I will never use the hospital system again that hasn’t treated me correctly and denies my complaints are justified.

  239. Over 40 years or so of studying clinician communications, on the way to making decision support tools sound plausible to a physician, I’ve developed some methods for managing my own care. The methods may not work for everyone, because they need experience not only with one’s own disease, but how clinical information is presented.
    For example, for any planned visit, I walk in with what looks like a thorough referral note…at first. It differs in that it starts with a (labeled) combination of Chief Complaint, then Goals for this Visit. From there, it has sections for current mediciations & drug reactions, ROS, PMH, social history, etc. I may put in a section about my ideas on differential dx, — think the A of SOAP — and then my thoughts on a direction.

    This document tends to get doubletakes from new physicians, but then I tend to get very good peer communications. Since it comes across as a physician dialogue, it rarely comes across as a power grab. I do note, however, that it tends to be rejected by NP’s and RN’s.

  240. The many many symptoms that dn’t seem to make any sense is probably Mast Cell Activation Syndrome. It is very very underdiagnosed and you doctors have not learned about it, as it is first coming to light.

  241. Living with a very rare, progressive and debilitating disease has taught me to become strong – perhaps not my body, it is slowly its ability to obey my instructions, but my mind (mostly) is still there and I have learned that in every class of graduting doctors, half of them were in the bottom half of that class. I no longer expect miracles, or even answers!! But I do expect compassion and empathy and above all honesty. I can not even begin to count the number of doctors who have lied to my face rather than admit that they do not know everything. Yes, I do know tons more about my disease than nearly all of the doctors I have met now. But, I would just like those other doctors to listen and to take a few minutes to peruse the documentation and articles I take everywhere with me. They are published peer revued articles about me……. perhaps not me personally but about what ails me. Please read them and show some interest to prove that on graduating as a doctor you did not know everything and that most people do not expect you too. It doesn’t hurt to continue learning though!!

  242. I think it would help all patients greatly, to understand that medicine, like most sciences, is not an exact science. We expect it to be so, and it is not. There are things that doctors, any scientist, simply cannot explain. Scientists are usually very good about admitting that they don’t understand something, but patients don’t like hearing the same thing about medical doctors. But they are scientists, too, just like in other disciplines, and they simply don’t know everything, and can’t explain everything.

  243. As a creator of a several support sites for those with Fibro and Lupus, as someone who has spent countless hours searching and creating “Fibro Friendly Doctor lists. As a patient myself whose own doctor missed a crucial interaction in meds that nearly ended my life, the two of us shedding tears together when I told him it was okay. Reading this as someone who has been brushed off by doctors, told a symptom was nothing to worry about when in reality it was a life threatening condition, someone who has been blessed also to meet a doctor new in his practice but eager to learn with me. One visit when we both knew nothing could help my pain, he sat with me, a tear slipped from his eye and down his cheek. His words I cherish still “I want more than anything to be able to fix you. I know I can’t…thank you for letting me try, and not hating me for falling short” that doctor is my hero. Reading I can’t hold back the tears …thank you, thank you so much for sharing. In a world where so many of us are told by doctors that it is in our head, or rushed out of the exam room frightened we know less than before we got there. It is simply priceless to read something like this from someone in the medical profession. You are one of the heroes

  244. Everything you say about a doctor’s fallibility and the emotions, and sometimes insecurity, that comes with it is touching. I like to remind myself of the human side that becomes so hidden behind the coat. However, I think it is very important to note one error that many doctors have, even the must caring ones: You expect respect, understanding, and trust from an individual who receives none of that in return, for the most part, in the immediate sense. When you walk into a room, you expect that your job demands these things from other individuals in able to efficiently and properly address issues, because your qualifications set you apart. However, I am a teacher. I have a Master’s degree and am working towards my Ph.D. I am a part of Mensa. Yet, I also teach 60 hours a week on a ridiculous salary to nearly 200 high school students, which I love and care for, despite the lack of respect, understanding, and trust between us. You cannot expect those things, because you are who you are. You must give those things because it is selfless and medicine and education alike are selfless pursuits. It can be frustrating to have a patient, like myself, who spends every day in pain and who are not “fixable”. Yet, it is also frustrating to me, as a teacher, to deal with kids who are not teachable, who cannot be “reached”, no matter how hard I try. Their lives have predestined them for awful things, present and future. Yet, I have no choice. I cannot simply refer them out to someone else or walk away in the middle of a conversation. I cannot spend all day trying different solutions and not blame myself for their failure. The blame is not on the kid, just like it is not on the patient. And, if you blame the disease and take the frustration out on them instead, because, in their desperation, they cannot, no matter how hard they try, treat you with trust, understanding, and respect because they are so broken—then you cannot then give advice on how we should treat you specifically to make it better for you and not the patient. I realize this was an attempt to explain how patients should treat doctors, so they will, in turn, treat them better as well despite insecurities and frustration about difficult disease. Yet, I cannot have that kind of conversation, where I label my expectations, with a student who has extreme issues. They already have the world on their shoulders, so how can I expect them to give more to me? That is what you are asking of your patients—to understand you in the human sense so that the relationship can be more beneficial. Yet, no other profession works that way, not teaching or anything else. We cannot ask someone else to understand us better to do our job better. We have to, as professionals, adapt. We must trust, understand, and respect, and we must not ask for it back.