I was planning on leaving behind the seriousness of the past few posts and going back to my usual inane writing, but some of the comments have made it too hard for me to keep quiet. The response has been largely positive, and overall it has been overwhelming. More people have read or commented on my letter to patients with chronic disease than any in recent history. I am grateful that it is circulating around the web for others to contemplate, perhaps understanding the intent of what I wrote and improving their relationship with their doctors in the process.
The purpose of the letter was to give some helpful insight into the emotion on the other side of the equation. I can\’t understand what it is like to have a chronic illness without having the disease, but it is still fruitful for me to try to figure this out. In the same way, patients with chronic illnesses benefit from a better understanding of the doctors they see so frequently and depend on so greatly. I can sympathize, but I can\’t feel the pain. Still, I do need to listen closely to patients so I can have the best relationship possible.
Some folks felt that I was saying that doctors need their egos stroked and to be treated special, but that is not what I meant to say. Each person needs to be understood and treated as their situation dictates. People with chronic illness want to be understood (as witnessed by the incredible response to my letter!) and treated based on that understanding. Doctors want to be understood as well. So let me tell you my side of the story. What is it like to sit in my chair? I don\’t say this for sympathy or pats on the back, I say it to be understood. If I am better understood by my patients (and readers), my relationship with them is better, which is good for both of us. I think I represent a fair percentage of primary care docs in these ways.
1. I care about my patients – As hard as I try to \”just do the job,\” and not expend the emotion I do during the day, I couldn\’t live with myself if I let my patients down. They depend on me for a lot, they pay for my service, and they deserve my best. I\’ve been told I do this to a pathological degree (along with my llama obsession), but it is there. I want to help them. I get frustrated at my powerlessness and am genuinely happy when they do well.
2. I am tired – Each day demands an emotional price. Some days the demand is not so high, others suck the life out of me. Being \”needed\” cuts two ways; on one side it is nice to truly help people when they need the most help, it\’s satisfying to see your life making a difference. On the other side, it is a never-ending river of need, pain, and crises to be handled. Being patted on the back (or patting myself) is nice, but it doesn\’t mean anything for the future. Each day brings new hands to hold, needs to meet, problems to be solved. Each day is as much a burden as it is an opportunity. That burden won\’t leave me until I take down my shingle, yet the opportunities to make a difference will make it hard to take that shingle down.
3. I also run a business – In terms of priorities, I need to pay my staff, pay the rent, and pay my personal bills to even have the chance to take care of patients. I get frustrated when patients insinuate that I value money too much. I get very frustrated by that, actually. People seem more willing to pay for cable TV, cigarettes, or eating out than to pay me for what I do. I earn less than most other medical specialists, yet some people resent my income. The mess of a system we have works against primary care and works against complex patients. If I spend 30 minutes with a complex patients (I do spend 30 minutes with people regularly), I am paid about 50% more than if I see a 5 minute ear infection visit. Doing the math says that my mind is not valued and that I should see more ear infections and less chronic patients. All of this adds to my daily stress.
4. I am actually a person, not just a doctor – I have four children and a wife, and being a dad and a husband isn\’t easy when I come from work with the emotional life sucked out of me. I struggle with my own emotions and I get sick. I worry a lot about money, and I feel insecure about the fact that despite being a doctor, I am not saving enough. Hence I also struggle with working too much. Life\’s not easy for anyone, and despite my title I am not exempt.
5. I hate bad doctors – Many of the comments to the letter I wrote were lamentations about doctors who suck. Unfortunately, doctors who take bad care of their patients make my life miserable too. I have to clean up their messes, I have to re-teach their patients on what medicine should look like. I have to wean their patients off of addictive drugs that they didn\’t have the guts to deny. I am personally frustrated when I send a person to a specialist and they don\’t do anything or upset my patient, and I hate the fact that they almost never communicate with me. It makes my already hard job even harder.
6. My blog is a refuge and a tool – I am thankful that I have this blog as a means to vent, to use another part of my brain (some may argue that point on some of my posts), and to make a difference. I actually have a voice in the whole healthcare reform debate. I actually can reach a large number of people and make their medical experience better (which was the most gratifying thing to hear in the comments to my letter). I\’ve made practically no money doing this, but I\’ve gotten a whole lot out of it.
That\’s my story. Like it or not, it is what it is. I am just a guy who happens to be a doctor – the same as the rest of the doctors out there. There will always be angry people and idiots on both sides of the doctor/patient relationship, but no matter what, the doctor-patient encounter is a human thing. Love is human, war is human, murder is human, and so is childbirth. You can\’t put humanity into a bottle, you can\’t throw a single label on it. The highest calling is to enter into another\’s life, to see things from their perspective, and to add good to it.
That goes for all of us, regardless of letters behind our names.
Thanks for listening.
Thx for “representing” 🙂
For whoever thought you were looking for ego strokes, I had the opposite reaction. When you said people with chronic diseases scare doctors in part because you can't impress them, I thought you were taking a shot at the all-knowing doctor stereotype–and that's about as far from egotistical as it gets.
Great discussion (again). Glad you didn't take a break from the serious stuff just yet.
Thank you for writing about these things from your perspective. Even if most of us have a good relationship with our doctors, many of us never get to hear these things from him/her. Reading your blog really helps me to keep things in perspective during the rare times in which my doc does something that just frustrates me. It also reminds me to speak up for myself and to listen without getting defensive. We humans are just so dang complex!
I have read during the health care reform debates that primary care docs make less than all other docs, and this seemed very wrong to me at the time and certainly explained the stress level of most PCPs. Now that more people are poised to enter the system we are going to be woefully short of family doctors just when we need them most. We are already importing them to keep up with current need.
I think most of us chronic patients don't imagine you will ride in on your white horse and brandish just the right miracle pill that will save us. But to have a doctor that can help us deal with the specialist, the medication side effects, and our own very real burnout and desire to give up fighting, that's a huge blessing and such doctors are worth their weight in gold. Success can't simply be measured in how long you kept a patient alive. Quality of life is also important–sometimes more so. Doctors that can recognize that are rare.
I was also thinking that the very reason you got SO MANY responses to the post about chronic illness and the patient/doctor relationship is that there are hordes of patients whose needs are just not being met under our current system. Taking very ill patients and making them drive all over the place to see individual specialists, some of whom are nice and well informed, others who are…NOT…that just doesn't WORK. It's no wonder patients give up. What if we had a quarterly meeting with all of our doctors? Together in one place? Talking together about the whole patient and how each of their pieces fit into it. If not in reality, in virtual reality. Conference call, even. I am so often explaining to Dr. A why x treatment is going to interfere with something that is the province of Dr. B and so on. This is so inefficient and what do less educated patients do if they miss something that is contra-indicated?
I almost think there should be some conference or series of conferences or online forum with panels of docs and chronically ill patients who can discuss and imagine the best possible system to meet our needs as well as be easier for the doctors too. Because what we have? It isn't working for either party.
As a mom I appreciated the earlier post as well as this one ~ especially as most of us have grown to admire good, great and adequate doctors in lieu of The Perfect One.
I wish you had used the phrase 'angry people and jerks' in your closing paragraph instead of the term you used; my son was born with Down syndrome and developed type one diabetes when he was 7 ~ he has been a more thoughtful and responsible patient than most people, who I do agree, can act stupidly.
What I don't get is why you seemed to think that chronically ill patients don't know that it's frustrating for a doctor to not be able to cure them? It's not that hard to see, we're also frustrated with the level of medical care available and the system being broken. Doctors often ignore that.
The problem was your post put the onus on the patient to be understanding without realising that often the reason patients are so poorly treated is that many doctors do not acknowledge their frustration, instead they blame the patient for it. One sided understanding is not understanding.
All the understanding in the world doesn't do a patient a blind bit of good if they can't get past a doctor's own psychological issues in order to forge a two way relationship.
It's also not as easy as simply getting another doctor, often doctors are oversubscribed, you're limited by whatever cover you have or the one specialist within two hundred miles is a terrible doctor. My back is in the state it is because the only back specialist within reachable distance is the one who caused it, my doctor can't even send me for x-rays on it, they have to ordered by a specialist in the hospital and by the time I managed to convince one to do it, the obvious injury signs were gone and I was suffering from a generalised instability which they could do nothing for.
Basically your advice rubbed a lot of people the wrong way, we can empathise with the problem of a doctor being frustrated, but we're really tired of having to do all the leg work then getting condemned for doctor hopping or by old notes from bad doctors.
The only way the entire mess can be fixed is to re-educate existing doctors and to change training for the up and coming ones so the don't inherit the prejudices and psychological issues of the existing doctors. Patients can't do that, doctors need to do it.
I have been fortunate to find good docs who view patients as partners in health care. I've left a few who spent no more than 10 minutes, prescribed drugs, and left without answering questions (i have no qualms about “firing” a doc and moving on to someone else). My current docs are great and I try to be a good patient. When meeting a new doc, I ask questions to get to know the doc a bit and then at all subsequent appointments, I make a habit of asking about their kids or their vacation or their time with “docs without borders” or whatever (my pcp and my dentist always serve the same two weeks in Haiti every year — now how would I know that if I didn't take an interest in them as people?). I think patients need to take some responsibility for making the doc/patient relationship a cordial and cooperative one and the best way to do that is to show some interest in the doc as a person.
Reading the comments, I think the majority of people got my point, which was that doctors don't handle complex patients well and complex patients' reactions to doctors makes it even harder. That was not meant to be patronizing at all. It was meant to be open with the humanness of docs.
Sorry – I use the term “idiot” a lot and equate it with the word “dope.” “Jerk” is stronger than I wanted to covey – their actions are jerky, but they are more clueless than mean (most of them, in my opinion). Maybe that's just me overestimating them.
We love you
Still Dr Rob, your entire explanation came off as “victim blaming” with your expectations.
We'd love not to tolerate jerks but sometimes as patients we haven't got a choice, doctors wield tremendous power over whether we get treatment or help.
It is not our job to make ourselves small and stupid so doctors won't feel offended or threatened by us, it is the doctor's job to either do their job or enable us to find a doctor who will do it if they're too threatened by something they can't “fix” to actually treat us well.
I love your blog. I just stumbled on it the other day to see if there is anything on the web about the possibility of getting rid of trochanteric bursitis after having it many years. Havn't slept all night for pain in both hips that wakens me every 2 hours calling for more analgesic cream! I didn't find anything helpful really, but love your blog.
I've been an RN for almost 40 years, and I loved to hear a doctor who is so human (like the rest of us), who really cares about his patients. I do not have that kind of PCP now, and when you are on Medicare (yes, another topic you could muse about), we have little choice. Where I live, if you have one at all, you are fortunate.
Thank you for taking the time to post these very interesting thoughts.
Regarding bad doctors, I'm sure they exist, but it seems a lot of people equate bad outcomes with bad doctors. And, I always want to say something like, “they probably did the best they could.” But, I try to avoid saying that to people who have experienced bad medical outcomes. They tend to be fragile and angry. I guess what I'm saying is that there are fewer bad doctors than people think there are.
I love your blog. You are an antidote to all the negative stuff about doctors in the US. I only hope that health care reform somehow manages to make your life easier instead of harder.
I agree with Dawn that there is not good reason for docs to feel offended or threatened (“It is not our job to make ourselves small and stupid so doctors won't feel offended or threatened by us”) by patients who attempt to have intelligent conversations with doctors or participate in decisions.
Medicine would work much better with 2 sentient persons on the same “side.” The only “side” should be the “bedside.” Both the patient and the doctor should have the same goal: finding remedies or opportunies to improve the patient's health.
I've written a lot under the tag “Talking to doctors,” but recently I responded to a fascinating article about the way doctors pass down their attitudes. Here are my questions for that doc & what I wish I could tell him: http://rawarrior.com/response-to-a-blog-written…
I really hope to see progress in my lifetime toward doctors & patients being on the same side. I know I will spend the rest of my life working toward that.
I love your compassion and think your writing is exceptional. I am sorry you have been chastised for your honesty on this issue. But as a patient with chronic illness I really appreciate it and completely support everything you have said. Yes chronic illness sucks. And, yes, many doctors suck at dealing with it – in much the same way many patients suck at dealing with it. It is a constant challenge on both sides, but as I see it, your posts are trying to shine a light on the issue and shouldn't have been attacked. I didn't actually bother to read most of the negative comments, but I can tell by this response that you have been criticized and I hope you won't let that dampen your spirits. I don't blog much for this very reason – no matter what you say there is always the chance for misinterpretation. Regardless, it is clear you are one of the rare doctors who really tries to get it and you should be applauded.
gingerrayoung, I also have have severe chronic hip bursitis for many years. I'd love to chat with you about what has helped me, and what you've discovered. (i'm just another person: I am not selling or recommending any sort of marketable items in any way.) If you are interested in this, would there be some way we can email off of here?
kathy, another RN (and long-time Dr. Rob reader!)
Dr. Rob, i (and most of the others here) appreciate hearing what you have to say because you are open and honest, and many of us have never heard that from a doc. I appreciate hearing your perspective. It's made me appreciate my PCP more, even tho i get frustrated with his office people!
I don't know if we can leave an email address here, but it is the same as my screen name at hotmail. Be sure to put the a (as middle initial). The person who has the name w/o the initial is an exotic dancer. 🙂 Love to chat with you. I feel that I am the only person in the world with this kind of chronic pain and would love to exchange ideas with a fellow RN.
you're a gifted author and i loved learning more about what it's really like being you. i particularly loved this point that brought it all together:
“There will always be angry people and idiots on both sides of the doctor/patient relationship, but no matter what, the doctor-patient encounter is a human thing. Love is human, war is human, murder is human, and so is childbirth. You can’t put humanity into a bottle, you can’t throw a single label on it. The highest calling is to enter into another’s life, to see things from their perspective, and to add good to it.”
you are definitely adding good to life as you share what's true for you as well as what you acknowlege as true for your patients – as you say, you're not in their body so you can't know what it's like. but i do feel that you get it.
and as someone who struggles with pain myself as well as wanting to help patients and providers speak the same language, i am so grateful that you've educated me on what it's like being you.
thank you so much – for being the honest, dedicated provider that you are and being courageous enough to open up this conversation.
Thank you very much. I appreciate your comments as well as your post on your blog.
Bravo! You have done an outstanding job giving insight into the emotion of docs and an even better job reiterating your points. Dr. Rob, you rock on with your bad self and keep informing us, that is what we are all craving.
I have sometimes wondered what the cost of treating me looks like.
I'm a complicated patient. No matter how often I manage to come in, there will always be multiple issues every visit. I live with a number of conditions that together might best be summed up as a long series of overlapping things going wrong. (Ehlers-Danlos Syndrome, POTS, bipolar, hypothyroidism, migraines, asthma, GERD & hiatal hernia, functional bladder disorder, IBS, fibromyalgia, allergies that tend towards sinus infections, Raynaud's, and I'm sure I'm forgetting something – if you were curious) The same things go wrong over and over (hip, shoulder, and back injuries) and I have a singular talent for having new things happen to me.
Because of the long list of things that go wrong, there's always the long list of medications to consider, and a great many treatments (medicinal and otherwise) are counterindicated by other conditions on the list.
I try to come in with my list of issues in descending order of importance. I try to make sure my specialists report if he can't get access to EMRs from them. I treat him with courtesy. I remember to (gasp and egad) thank him because I know that while I'm paying him, he can't possibly be in this for the money, or he'd be a specialist. I try not to waste his time or get upset with him if he's running late, because I know I'm not the only patient.
I figure respect and knowledge should be a 2 way street with my doctor. I treat him as an intellectual equal with specialized knowledge that I don't have. If I read something from a reputable source that has me concerned (especially if it's to do with one of my rarer conditions), I print it out and bring it to him. I know he doesn't have infinite time to read, but I also know he doesn't have infinite time to research, so I try to balance between those two issues.
I think of my doctors as consultants for my health – I'm the CEO of my health, and I make the final decisions, but I'll do a lousy job of it without good consultants. I'm not afraid to fire doctors who I feel don't have respect for me or who don't take my health as seriously as I do. On the flip side, I do what I can to add 'fringe benefits' for the doctors who are good to me – I send them cards, especially when I go on vacation, I make sure to tell them if a new treatment is helping a lot, I send little Christmas presents. I can't get my GP paid more (though if I could, I would!) but I can make sure he knows that his work makes my life better. Yeah, he can't get rid of any of my major health conditions, but it is due in no small part to the quality of care I have from him that I've been able to continue going to school.
~Kali
I forgot to mention – I apparently am a good patient, because my doctor recently recommended me to act as a chronic illness mentor to the medical students at the university hospital he works at. They get a couple meetings a year for 2 years with me to learn more about treating patients with chronic illnesses, and have a chance to ask questions about what it's like, what makes doctor's appointments better for me, and about what I look for in a doctor.
I'll get 5-6 of them (I may do 2 groups) to educate. I hope this program really makes an impact on these future doctors! I find it really encouraging that at least some med schools have instituted programs like this – people are recognizing that there is something fundamentally wrong in the way the medical system as a whole treats people with chronic illnesses and they're trying to take steps to change that.
~Kali
Thank you for writing this. In the six months since my father was diagnosed with stage IV RCC, I've met quite a few members of the medical profession, some of which were completely compassionate and had my father's best interests at heart, and a few who have left me breathless with their lack of regard for their patient and his family.
Physicians, like patients, run the gamut from good to bad, caring to cold. I've learned to appreciate the good, and to fire the bad. And maybe now I'll recognize the bad a little more quickly so as not to waste precious time.
When your oncologist thinks eight months of life is “success,” you'd best not sit back like my father did. Make every day count, whether you're terminally ill or not. And try to add good not only to your own life, but to the others' lives around you.
Thank you for your serious posts as well as your 'inane' ones. I love that you strive to bring your A game to every aspect of your life. You and those who encounter you are better for it, even on days when you don't live up to your own expectations.
I'm a bit behind on my blogs and so just read this. I appreciate your honesty. It gives me some things to add to the list I keep in my head when a doctor doesn't live up to my expectations. I've learned to say to myself afterward, “Maybe she was just way overbooked today” or “Maybe he's worried about something at home.” Now I can think about how tired the doctor may have been that day and about the stresses on his or her business. As a chronically ill person, I've been in a lot of doctor's offices the past nine years. I'm trying to find a balance — to be sure to use good judgment about when a doctor is just “having a bad day” as opposed to just being a bad doctor (or at least not the right doctor for me). It's tough — for both of us.
I have a degenerative disease(Stickler's Syndrome) and Colon Cancer (previous resection) and have felt so much frustration with doctors. I have really started avoiding them even though I need to go because I'm so fed up with trying to deal with them. I swear they act like I'm crazy or faking when these tests do not show something. It is so humiliating. The arthritis doctor I was rec. to go to by my insurance company because he is the only one in Athens even said “There is no such thing as Fibromyalgia.” This was a great letter and in some ways give me hope to try again with some specialists but I have been burned so many times sometimes I'd rather sit here and hurt than go try to solve any issues because going to the doctor is so stressful.
[…] some of them on the offense, that Dr. Rob wrote a few blog posts in response. One was titled My Side and after an introduction he made six points. To get a sense of his response, I’ve listed […]
New here, thank you for sharing what you have to give in the way of expressive writing. I am neither vain or arrogant enough to think I know more than any doctor. I wish I had been fortunate enough to have found a good GP to acknowledge that he/she is neither a God or Shrink. I have fired more than I have kept because it seems easier to say I have a mental issue (which mind you, if I acutally did, I would accept help for it. I am accutely aware chronic illness can bring on depression etc) than to accept I am a very complicated case. After 22 surgeries, several treatment plans & lots of trial & errors, I am still standing, still waiting, still practicing seek & destroy missions on my body & still trying to dig deeper than my frustration to find the right team to help me feel better before I put two feet in the grave. I found the 3 articles related to this one inspiring, eye opening & to be honest a bit skeptical. I hear you saying, “not all doctors are doormats (essentially) and some still believe in the oath they stood proud and agreed to. But at the same time, I hear honest fear in your voice. I hear, albiet off in the distance “I don't want to see another of my patients lives destroyed or worse yet another family members tears over their early death.” I get it. BUT, understand, I've been …. hmmm…. sickly for the better part of my life. I have had more surgery than all my familiy members put together, more deficiencies than one body should tolerate and still my specialist is unsure with 100% accuracy on what to call what I have. now, I have a leaky heart valve too. I'm exasserbated, frustrated and damn scared of what my future holds. I have successfully raised a son with Asperger's Syndrome/Bipolar Disorder and failed with my daughter who no longer spends time with us, communicates with or acknowledges us because she can't see a wheelchair or a cain, she can't IV's hooked up to me on a daily basis. She, as do many, thinks I am makin more of this than what it is. 22 surgeries, pills for breakfast just to get up and get moving, resting at any given moment in a day, can't work (surgeons won't release me anymore) therefore she thinks me lazy. I mean I'm sure you've heard it all. I got the flu one day. For 8 weeks I was bed ridden and sicker than I had ever been. For 10yrs August 28th, I have slowly gone downward. I have not given up. I refuse to. What God doesn't fix, Spirituality gets me through. I listen, I choose carefully what applies to me and toss the rest. I refuse to watch commercials anymore, get involved with groups where drama is the focus not the ailment. I dismiss anyone who believes me a seeker of attention. I stay current on all things that apply to me. I still walk into a new doctors office with both fear and hope that he/she will care as much about me as though it were his/her own family member. Admittedly, I too can be overwhelmed by my mysterious health. I just wish doctors would look at me and tell me, I don't know but I won't give up. They ask it of me and yet I have not found one who will be my partner in care. They MUST trust me when I tell them something has changed. I kept telling my family doctor, I'm beyond faitgued. I can't even mow my lawn without stoppind a dozen times. He told me I was pushing to hard. WHen I spoke with my Pulmonologist, he says good news, you have better lungs than 13/20 percent of the population. Bad news, you have a leaky heart and we need to get a follow up with a cardiologist. I told my doctor, I BEYOND exhausted. That raised a flag for my pulmo yet my family GP ignored me. It makes me wonder what could have happened had we not gone a step further on our own. I have many stories such as this one but I've been long winded enough. In short, this problem goes both ways. Both parties are responsible for finding solutions to the problems current or that may arise. But, I as the patient should not have to go to medical school to cure myself. I dont' mind be an active contributing partner but I don't want to be my own doctor. It is what I pay good money for. I want the doctor to stop lumping me into the “common ailments” based on demographics & take me seriously as an individual. Thank you for your time.
[…] Rob wrote two follow-up posts, My Side: What It’s Like to Sit on My Side of the Exam Room and To Know and Be Known. “My Side” reads like a defense of Dr. Rob, and I think it is. […]
I finally got the time to come here and review what some have written. Wow. I can see you’ve walked through the valley of the shadow of death. God bless you and keep marching on.
“5. I hate bad doctors” — don’t we all! But those of us who have seen a lot of them and for whom doctors really matter because of our chronic illness, please understand that we really really really love good doctors!!! Even when they can’t fix us, just to be understood, not blamed for our problems, and to know we are in the best hands possible is so very important to us. I only wish I had more time to say this to my good doctors, but it is hard when time is at such a premium and you want to focus on what you are there for.
Someone once said a man’s greatest strength is also his greatest weakness. I am a primary care physician, and I get grumpy when one of my patients is not doing well. At first I wondered if I should try to “leave it all at the office”, but soon came to terms with the fact that I am going to feel pain when my patients are not doing well because I care about them. The fact that I care is what makes me good at what I do. So, the pain is part of the cost of doing business in this field.
Thank you for admitting that you care. I have been to countless doctors in multiple specialties. I have had tests, surgeries, hospitalizations, and the truth is….I feel like I am going crazy. I have all of these symptoms but get bounced around from one specialist to another from one state to another (because we do not have too much to offer medically in my home state). My GI specialist in particular has been very moody with me during 2 or 3 visits, and maybe it was because what our treatment plan wasn’t working and we were running out of options. I thought, at the time, that he was mad and just being a jerk because he didn’t believe my illness/symptoms. He does try to downgrade my symptoms though. I have gastroparesis and require a gastric neurostimulator to remain stable.
I am also a Registered Nurse, so I see both sides of the spectrum. I have noticed a big change in healthcare just over the past 3-5 years. When we go to the doctor, we now have 15 minutes to discuss 1 complaint/symptom. When you are on 5+ prescriptions, have 4 specialists, 3 hospitals, a chronic illness that not much is known about, and an undiagnosed physically debilitating disease, I think 15 minutes is a joke! Seriously? My favorite doc about 12 years ago used to see me every 1-3 months just to check in and stay on top of all of my illnesses. I had a lot going on, and she wanted to see me frequently so nothing would get missed. I always walked away feeling like I had a comprehensive appointment with a plan. Now, I feel more puzzled as I leave the office. I really try to leave with answers, but more often than not, I leave with more questions, frustration, and loss of hope. I feel like I am no longer being heard.
But, thank you for caring. Thank you so much.
I feel exactly the same way. Our system is so broken, when I hear of someone having a good experience with a doctor I’m mystified. I always leave less sure of myself than when I went in.
One of the things I’m confused about is this repeated call to build a doctor/patient relationship over time. However, my GP has never asked me to come in for a follow up and always rushes me along. Same with the Rheumatologist. I’ve been to multiple doctors, and they all do that…How can I build a relationship with someone if they’re treating the doctor’s office like an assembly line?
And the worst thing is: because you are rare, you probably have to take the most emotional load from us. And not only because a lot don’t care anyway, but because since we sense and know you care, you’re the one we unload to. When I went to see my GP last time, I spent 30 minutes crying. I aired out everything I felt about the other doctors, everything I felt about the disease, I cried like I don’t allow myself to with my sister because she already takes on a lot, and I know that she’s scared for me now even though she doesn’t show it to me, and certainly like I would never do in front of a lot of other doctors. So it was my sweet GP who ended up hearing it. She couldn’t say much but she cared and it was comfort.
I am a patient with 4 chronic illnesses, all autoimmune. I’m very choosy about my doctors because I demand a lot from them. At the same time, I know it has to be a partnership. And maybe I have an advantage, having worked around inpatient floors of a teaching hospital for many years, but I am quite aware that my doctors are people too. I’m responsible for providing the information that helps them help me. None of my current doctors has the God complex once common among MDs but I still see many patients treating them that way. That attitude harms both patients and doctors. It’s a shame it isn’t more common for people to see the MD-patient relationship as a partnership between two people – one who knows what symptoms are being experienced and one who has the knowledge to fix or at least alleviate some of those.
There are still an awful lot of doctors with the God Complex, and I suspect copious interactions with such doctors is to blame for most of those patients’ attitudes. It sure was/is with mine. It’s hard not to get jaded and defensive when every doctor you go to tells you you’re a hypochondriac, tries to give you unnecessary and harmful short-term fixes, or ignores you.
yes, there are still doctors with the God Complex. There are two ways of dealing with it: document everything to great detail to provide evidence of patterns or a clear list of symptoms over history and if the doctor still ignores you, CHANGE doctors – preferably to someone recommended by others with health problems. Having worked in a teaching hospital for many years, I truly know how many fools manage to pass their boards and so am choosy about my doctors. At the same time, our doctors have thanked us for the records we provide for them.
Super good advice, and all things I’m trying to do now. I tried changing doctors a few times on my own, since having a rare disease means finding doctors by word of mouth is almost impossible (my current awful doctor is great for my dad, since he has garden variety heart disease and obesity, but not so great for me and my EDS), but haven’t had much luck. I have an appointment at a relevant clinic in my town that will hopefully result in at LEAST a clean, concise, and undeniable diagnosis which may help a bit (currently, I have a “you probably have it, but it’s not my specialty” from my rheumatologist and a “you almost definitely have this, good luck” from my physical therapist)…It’s just frustrating how little my doctor trusts me when I have pretty much every classic symptom of the disease. Blerg.
Thank you so very much! As a chronic pain patient, I say that your patients, family and staff are so blessed to have you in their lives!! I would be ultra happy to have you as my physician. God bless you!!!
Hi I am a doctor ( and dentist) and have a chronic disease so I truly know what’s its like from both sides. Somedays it’s a curse, other days its a blessing.Now I need to find a decent few doctors who can care for me because as I am sure you know- doctors are not your usual patients and doctors with in curable chronic disease are yet a bigger challenge!
God Bless
Several years ago I read a series of articles entitled “understanding your doctor” It kind of opened my eyes to “the other side”. It may be partly responsible for why I have always had such good relationships with most doctors through the years. There is such an anti doctor sentiment out there. I hear people talk bad about doctors in general ALL the time. When you walk in the office having already pre-judged the person simply because of their profession its going to show in your attitude and effect the relationship. I think you are doing a good thing by letting us know how you doctors feel and think.And it’s important for people to know there is a huge shortage of primary care physicians and how that effects yalls ability to be the kind of doctors for all your patients that you wish you could be.
Here is a link to an one of the articles in that series.
http://wol.jw.org/en/wol/d/r1/lp-e/102005042
It quoted one doctor as saying:
“Work was flooding me: needy people wanting my time; distressed people wanting to off-load their distress; ill people needing my action; manipulative people pushing and pulling; people coming to see me; people pressing for me to go to them; people coming down the telephone wires into my own home—and even my bedroom. People, people, people. I wanted to be of use, but this was madness.”
Bless you and thanks for this. I wish you were my doctor!
When you speak of having to ween patients off of addictive drugs that other doctors are afraid to deny they’re patients does that imply that you do not believe that there are patients that can strongly benefit from the use of opioids/opiates? I was in involved in a head on collision 5 years ago and ruptured my C3 and 4 vertebrae. I have been in constant extreme pain ever sense despite the fact that I continue physical therapy to this day and despite the fact that my current MRIs show only Degenerative Disk Disease. I have had numerous epidural shots against my own better judgement to make doctors I have seen happy. I have done more research on pain treatment then most doctors probably have and have always done everything asked of me by doctors but yet I still suffer greatly. I would accept the fact that I must live with this pain if it were not for the fact that I have been treated with great success in the past by a well respected, legitimate pain specialist. Shortly after my accident I moved to FL because after attempting to resume my successful career managing carpet cleaning companies I was unable to any longer perform the task that my job required. Even as a manager in the carpet cleaning business most, if not all companies require you to still perform the physical labor an a daily basis. With this being my career sense I was a teenager and with no degree I was in a bad predicament. So I moved to FL to live with my father while I sorted out what to now do with my life. I still needed continued treatment so I did some research and found a very reputable Pain specialist. FL does not have the best reputation in this area but the doctor I found was actually appointed by the state of FL to lead its efforts in ending the problems the state had with pain clinics. His practice was the state model for the reforms to pain clinics in the state of FL. His choice of treatment for me was the use of what people consider to be powerful and addictive drugs. I took one extended release pill 3 times a day and was given 3 instant release pills a day for breakthrough pain. Along with physical therapy that was my treatment. Within 2 months I was managing a carpet cleaning company again and continued to do so for over a year. I was carefully monitored and my doctor educated me greatly on the proper used of medication and also the difference between addiction and dependence. My life was back on track and I was happy. Then I was offered a job in OH that I thought no one could or should refuse. I had thought that because I had been treated successfully for over a year that I would have no problem finding treatment in OH so I could continue on the successful path I was on. How wrong I was. No doctor would even agree to see me either because of the medication I was on or because I was from FL. The only treatment I could find was steroid shots, physical therapy, and 10/500 90 low dose opiate/liver killing tylenol mixed pills a month. I tried my best to stick it out but within 2 months I was forced to leave my position witch then led to the loss of my home and car. I was forced to move back to MI and now be a burden on my mother at 38 years old. I have not found better treatment sense then, only doctors that treat me as an addict or tell me its not that bad. I have even been told it was all in my head. I am sorry but I would not give up everything I owned and a 70k a year career for a room in my moms apartment and a $12 an hour job for something thats in my head. I still continue to go to physical therapy and do all my doctors ask and they continue to treat my chronic pain as acute pain and ignore the fact that I have no quality of life. It would not be so hard if I didn’t know that it was not at all necessary and that the treatment that could give me my life is more then possible but already proven and backed up by research. I am being denied my life because of fear, politics, misguided assumptions, and the misinformed public opinion. When I think of all the people with much more painful conditions then myself it makes me ill. When I think of the fact that the addicts that make it so hard for me to get treatment can easily go get Suboxone or methadone and a pat on the back while pain patients get treated worse then them I want to cry. I often wish I were an addict because if I could even get Suboxone It would be enough to get my life back. I consider lying and saying I am an addict just so I can get the treatment I cant get as a pain patient but I shouldn’t have to. I should not have to go find a dirty doctor that I see people getting prescriptions for anything they want from. I don’t because I have morals and I am honest. The cost for being honest is my life. All I wasn’t is my life back. I worked hard and earned everything I had and I have been a good person all my life. Choosing to remain a good person and not lying to get the treatment I deserve should not cost me my life. I there is a treatment that works for someone they should get it if it make the difference between having or not having a quality of life. If I abuse my treatment then take it away but I deserve the chance. If the pain will be here forever then what is the difference if I take a medication that can be hard to stop. There are plenty of other medications that people need to take and become dependent on for the rest of their lives. Chronic pain sufferers deserve to be treated just as well as diabetics, depression patients, mental patients, or even addicts. Pain medications should not be demonized. Research has proven that they can be used effectively and that the risk of legitimate patients becoming addicted is low. The American Medical Association considers narcotic pain medication to be the “Gold Standard” in the treatment of chronic pain. Why are so many people forced to suffer needlessly?
I wish u were my doctor. Having multiple chronic illnesses….finding a competent doctor has been a challenge. Thank you for sharing so openly.
We need to be heard not just listened to. I have had Chronic Pancreatitis for over 9 years, and it is one of the most painful things you can deal with. I am working to change how people are treated, with the FDA breathing down Dr’s throats about the amount of prescriptions they write, more and more patients are not getting proper medical care when visiting the ER for a flare up. People with chronic pain are being refused treatment because they are being looked at as drug seakers and it is ridiculous! Any tips you could give on how we can do this would be great, a petition will be circulated for this to patients and Dr’s alike and then submited to the proper channels, I don’t know how much good it will do but I do kknow doing nothing will create nothing!
Thank you for your honesty and openness. Very refreshing and helps to clear the air so to speak. It is very hard to be a person with a chronic illness especially one like ME/CFS which my doctor told me he doesn’t believe exists….I wish I had that luxury or even that he was right and it didn’t exist but unfortunately, it does. Still I sense that he cares but feels a lot like you described
. Frustrating for both of us…..if the doctor who sees us for a few minutes is frustrated by the lack of a cure think how we who are sick for decades feel with only the medical profession to depend on to help us.
I have admiration and respect for what you wrote. More importantly, I respect who you are as a person. THANK YOU !
I am a patient with several chronic issues who has been lucky enough to have had a GREAT doc. Even if it was for a short while due to our messed up health care system. He had to leave the hospital for his sanity. I still search for a good one, but settle for ones that don’t suck. Good way of putting that Dr. Rob!! I don’t know you, have never even had a doc named Rob, but for all those patients out there that this is going to help. THANK YOU!! You will help some people see that docs aren’t GODS. They are people just like us patients. If we are lucky we will have one GREAT one to teach us how to find one that doesn’t suck. I also wanted to say that line about the highest calling is one of the most beautifully written lines I have ever read. It struck a cord. Thanks, you are doing good.
Dr. Rob, I really want to applaud you for what you’re trying to accomplish here. It is TRULY a constructive thing you are doing!
I was diagnosed with Chiari Malformation in 1996 following a car accident, in which I received a severe whiplash with herniated and bulging discs in my neck and back. (I have since been diagnosed with several others that tend to go hand-in-hand with CM.) My pcp was a FABULOUS and COMPASSIONATE human being. He also suffered personally from MS. After sending me to multiple specialists (NS and NL), he was just as frustrated as I was with regard to what what going on with me. In fact, due to some similarities in the symptoms we were both having, he even had me tested multiple times for MS! We were being told by these specialists that the finding of CM on my MRI, as well as the diagnosis of cavernous hemangiomas on my spine, were “… benign findings that would never cause me any problems.” Several of these doctors accused me of needing psychiatric care (the symptoms of CM are wide spread, as it affects the brain stem and spinal cord, so it affects the ENTIRE nervous system!) Others accused me of being a “pill seeker” (which I called them on the table immediately and told them to call my pcp and ask HIM what I thought of narcotic drugs! I wouldn’t take them!) These doctors were WAY out of line! What’s worse? I had to PAY these people!!!
After 4 years and a LOT of out of pocket money for specialists and tests, I finally gave up on going to doctors and just suffered silently and did the best I could. In 2008, I absolutely couldn’t take it anymore… and after leaving work (a job I loved, btw) I started in with doctors once again. I endured 3 surgeries… discectomy and fusion at C5-6 (after numerous injections and tests), carpal tunnel release, and finally shoulder decompression. All to no avail. In September of that year, my psp and I put our heads together trying to recall what it was I was diagnosed with back in ’96. When we found it and looked it up on the internet, we were amazed and disgusted at the same time. As it turns out, ALL of the symptoms I had been experiencing were right there in black and white! So much for the NS and NL… the so called specialists! I’m sorry, but they WERE worthless and didn’t care at all.
It IS frustrating to pay the doctors who are bad. Consider this… if you were attorneys, we would have a FREE initial consultation… to see if we could work together after getting an understanding of what we would be dealing with. IMHO, I think it should be the same way with PCPs and specialists. That’s just from the years of BAD experience.
BUT… on the other side of things, there are wonderful individuals such as yourself, and my Dr. H who make us FEEL that at least someone has the care and compassion to TRY and help us, and other doctors, understand our conditions. Dr. H didn’t hesitate to receive from me the 3″ thick three ring binder of information that I was able to get from the internet for him to review. THAT is working together… and care and dedication to a patient. (And he soon found out that I was not going to be his only CM patient! So when others came, he was informed! 🙂 )
I appreciate what you’re trying to convey to us. It is useful and constructive. I also want you to understand that sometimes it’s not YOU we are aggravated with, but the other doctors we have had to see who have done nothing. We KNOW that you aren’t a specialist… so we don’t expect YOU to fix us. In this we are as frustrated as you are. But never forget… we DO want to be fixed! We don’t really want the “bandage” of drugs.
What we DO want, are the specialists you send us to to LISTEN and not JUDGE us… we don’t want DRUGS, we want FIXED! I know that CM cannot be cured. So do what you can do for me and give me medications that won’t leave me drooling in a corner somewhere – this happened to me for almost 4 months! {Dr. H finally told me that he would have to put me on morphine and some other really strong meds JUST TO GET ME OFF OF the ones I was on. At that point, I made the decision to cut the “bad” meds in half and start decreasing them myself until I was off of them (I was on 9 meds at the time!) I made a choice then that I wasn’t taking any of these long term anymore! (i.e. I DID take Percocet after my CM decompression surgery for a short time. Sometimes you DO have to have the strong meds… sometimes you just can’t get around it.)}
Don’t just try and medicate me to shut me up and keep me from sitting in your exam room… that is only making my situation WORSE… and in some people’s cases, you have merely replaced one serious condition with another… ADDICTION to prescription meds. THAT should never be allowed to happen.
We understand that you all are human… and that you don’t have ALL of the answers right there. For even if two of us have the same condition, we are all still different… and what works for one of us may not work for the other. In short time, yes… we have the internet and we educate ourselves. Please understand that we HAVE to do this! (For 8 years I trusted the words of the specialists that CM and CH weren’t anything to be concerned with and weren’t what was causing the problems I “supposedly” had. Trust me, I am VERY WELL educated now! And not by doctors!) Some conditions are scary when we’re told about them… or if those diagnoses are ignored by our doctors and not explained to us, we want to know! We HAVE to be our own health care advocates! If we aren’t, who is? You already have your hands full, as we know we aren’t your only patient. But wouldn’t if be beneficial to read up on something you’re not familiar with, even though it requires a specialist?
Thank you, Dr. Rob, for trying to bring understanding to the doctor/patient relationship. I agree whole heartedly… it is one of our most important relationships! I hope we can find some constructive suggestions to go both ways… and who knows?… maybe we can get them put together and sent around to ALL of the doctors and specialists in the U.S.! I know some would still ignore it. THOSE doctors will always look at themselves as “Dr. God”. Nothing we can do about them except to STOP SEEING THEM!
Let’s keep trying to share constructive conversation!