I\’ve been getting a lot of traffic lately…and a lot of comments. Perhaps you\’ve noticed. Overall I see this as a good thing; I write to be read, not to be a voice echoing in the virtual void. I want to share my thoughts and ideas and enjoy my interaction with people, even those who don\’t agree (especially with them).
But a few things have happened lately that have saddened me. The first was the reaction of some to the post about Chronic Disease. Most of my readers saw this as it was meant: a look into the not-so-perfect psyche of doctors and some tips on how to handle them successfully. Some, however, accused me of \”victim blaming.\” They were offended that I would suggest that patients should be aware of how they came across to doctors. They felt that I was being patronizing by assuming a I know how they felt (despite the 1st half of the letter dedicated to the opposite). I have re-read the post several times and am convinced (as are the majority who read this) that my tone was not at all \”victim-blaming\”
Then came my most recent post on autism. The whole purpose of that post was to lighten up a little and share a joy I have found in my autistic patients. It was meant to be a warm and fuzzy post, but was picked up by an autism activist site who read my intent as calling autism the \”new normal.\” Again, I re-read the post and see no evidence of that whatsoever. I have seen that patients like those with autism, Down\’s syndrome, and other significant mental/social disabilities can teach me things about myself. I am not God (despite what some commenters think of my opinion of myself), and I actually believe in the idea of \”the last shall be first\” – that our greatest victories in life come from humbling ourselves and listening to those the rest of the world shuns or ignores. I see more of God in the eyes of these people than I do the CEO\’s and other \”successful\” people who come to my office. I see my own pride and self-centeredness, and I am grateful they show it to me.
So why would two posts that are actually positive in nature elicit such a negative response? Why would people unleash the guard dogs on someone who comes as a friend? I can only guess, but I suspect that I somehow reduced their victim-ness by what I wrote. Some people seem to identify themselves by what bad life has dealt them, and any threat to that identity is met with hostility. I think that\’s what I saw.
I don\’t deny the pain they have in their lives, and I don\’t deny their victim-ness. I would not trade places with chronically ill patients or with parents of autistic children. But things are what they are. People do have chronic illness and parents do have autistic kids. That is the pain in life that I know intimately as a doctor. What is sad to me is that in maintaining their status as victims – avidly defending the reality of the pain in their lives – they attack those who wish to help.
That is sad. I am very sorry I can\’t help.
But it\’s time to call off the dogs.
45 thoughts on “Call Off the Dogs”
It’s fine when people disagree and state their comments as such, but personal attacks are completely out of line. When people are quick to judge and criticize you, it says nothing about you–it simply says that they are people who need to judge and criticize others.
Dr. Rob, you’re one of the “good guys” in medicine. If everyone had your heart and conscientiousness, our entire healthcare system would be so much better than it is now. Keep up the great work, and don’t let the negative, disgruntled naysayers of the world get you down.
It was actually reading your post on chronic pain that made me join today (for what it’s worth)
I too appreciated your posts and believe I understood the intent. I am fortunate to have doctors very much like you who help me navigate the constantly changing terrain of my own chronic illnesses. None of us have all the answers all the time. We are all puzzles in one way or another.
I have observed the tendency of some communities of individuals who live with particular diseases or challenges to hang on to a victim mentality in order to protect their identity. Sometimes this can help to bring awareness of a disease or condition. Other times it turns people away who might have more in common than is presumed on the surface.
Sorry that you feel attacked and misunderstood. I would be one of your readers who found your posts to be sincere, honest, and uplifting. Thank you for continuing to share your thoughts with us.
I saw your posts as a way to find bits of sunshine in a tough situation. Moments of joy.
You rock. Simple as that.
I have gross motor dyspraxia (if that's the correct term). Nothing major compared to chronic illnesses and autistic kids, but I can tell you that a paediatrician who takes you and your parents' concerns seriously AND encourages you to work with what you have instead of yearning for what you haven't got can make a huge difference.
Keep up the good work.
please don't allow some folk who chose to see things as negative to stop you from sharing your heart. Most of us really appreciate hearing what you have to say. It gives us an insight we would not otherwise have.
That's the danger of sharing anything publicly- it's easy to have something taken out of context or misinterpreted. These misunderstandings will happen periodically- don't them discourage you! You mean well and we know you mean well, so keep writing!
What's perhaps saddest to me is how this demonstrates a coarsening of our culture at large. Whatever happened to “I respectfully disagree?” What happened to using logic to make or refute a point, or even owning up to your own emotions or biases? Anyone remember that? Hello??
You know this already but I find your posts honest and heartfelt, and POSITIVE. The people who can't see that need to consider surgical removal of the chips on their shoulders.
As someone living with CRPS in all its weirdness (and one of the weirdest things is the hideous neuropathic pain of having my body think my left leg is my enemy and must BE DESTROYED), I didn’t find your post about chronic disease insulting or in any way offensive. I decided quite a while ago that docs need to be treated with care when they are trying to treat you and you have something that no one understands very well. I didn’t feel that you were telling me to pull my socks up, take my drugs, and do what I’ve been told to do.
I have many friends living with autism. I have had many patients and clients during my time as a speech and language therapist living with and struggling with autism. All have taught me something. Something important. Sounds like you’ve learned some of the same important things.
Lastly, a good taco fixes most things. Have 10 of you must. And burp after.
I didn't feel qualified to make any comments on either of the 2 posts mentioned above, so said nothing. However, I'm going to stick my neck out here and say that I loved both of them because they showed me humanity and compassion. In a similar way, this post here shows that through your bewilderment, you still wish to understand.
In the end, we are all entitled to our opinions and all entitled to voice them. But shouting them at the tops of our voices whilst calling other people names, is undignified and not acceptable. In this world of free speech, I find myself often disagreeing with another's point of view. When I reach that position, it's sometimes better to simply say “We must agree to disagree and leave it at that.” Maybe in someone else's eyes, that makes me a coward, or an idiot, or just naive. That's a view they're entitled to. I choose to disagree.
Dr Rob, your posts are always well-written and enjoyable, even if the content is difficult. I very much regret the hounding, and yes, someone should tell the dogs to Sit, Stay.
There will always be people who will misinterpret a writer's work, and people who will attack because attacking is satisfying to them. I've read your recent posts, and I find them wonderfully honest and moving. Thank you.
I loved those posts. Thanks for writing =)
Anyone that has read you for any length of time could not have possibly taken things so far off track. You are the kind of person and physician these people would love to have. You listen, you care and you educate. I was saddened to see what was going on over here. Most undeserved.
I certainly know how it is to be misunderstood. I've had a few experiences, and they are not pleasant. I was fortunate; however, that once the lines of communication were opened, a friend was found instead of a foe -on both sides. We can, at times, unknowingly hit on nerve, and have no idea we just stepped on a trigger. The key thing is for respectful discussion – one of the things I like about this site. You always offer that. I see no need to attack another individual. We learn nothing of value by doing so.
Dear Dr. Rob,please don’t feel alienated by negative reactions to your wonderful letter (which will be available to the German ME community as of Sunday, and I’m sure, they will like it!).
No, you are not blaming the victims when stating that also doctors are human beings and have to be treated with the very respect and understanding we demand from them when treating us!
We have to face the reality which IS that they often can’t help us though they want, that we scare them, that we undermine their professional identity just by being what we are: chronically ill patients.
We should stop blaming each other and instead enter into a joint grieving process: that we ARE all mortals, that no one can change the bitter reality of chronic disease (or change it just a little) and that all doctors can do is making good medicine – they can’t do magic. Many of them would if they could.
And as much as we demand from them to make good medicine the doctors may demand that we are “good” patients. Only a good relationship between doctors and patients may be the basis for any successful treatment, and be that “only” supporting the patient relieving his/her symptoms.
I think it is very honorable and kind and courageous of you to share with us your feelings. Thank you, and please, don’t let yourself be discouraged by negative reactions. Being subject of such is part of the business to post ones opinion on the Internet! I know what I’m talking about…
Regina from Germany
I think you are “spot” on as they say. Victim-ness can become a default setting and people get stuck there. It is limiting but they cannot see that so they stay there. Sometimes people stuck need someone to point it out to them. A parental figure once told me that “Attitude is everything”, and I remember thinking , “What the heck do you know!?” and it as only when I had lived 10 or so more years that I realized that it may not be EVERYTHING – but it affects everything and is so vital to use as a powerful tool and it is something we can experiment with and change until we get the setting that works.
I certainly don't see myself as a victim and I wake up everyday and make the best of my day.Enjoy my children and take my illness one day at a time.I do though take my right to have a differing opinion than yours and that doesn't make me a person lost in Victim-ness (is that a NEW word?).Of course some people are going to interpret your words differently than others and that will not be based on basic different views but also based on different life experiences and people who have simply sat on the other side of the desk. If you are going to write a blog then you will get critics and some will seem unreasonable and others will make good points that you should think about and not just get defensive about,which many of your critics were doing and I feel you are too now!
I like what you have to say but I not sure I think this post so much because you are blaming people's psychological condition for their reason for criticizing you.I think you would have been better off ,just saying I disagree I think calling people out as maintaining their status as victims actually is quite insulting.And very condescending.
I have been treated badly by the medical profession and I am glad that there are Doctors like you that try to be self critical and want to help their patients.But then you need to listen and accept the words of your critics too,even if you don't agree and let it be a critical comment without calling it out as a critical comment because someone had a bad deal and they are taking out their victim-ness (is that really a word?) on you.You don't have to like it or agree with it just hear it and take it or leave it but then let it go and move on.Maybe remember it when you find yourself in a situation with a patient that has been through what these critics have been through and maybe think about how hurt they were feeling.Maybe you might be helped by it one day even if its not today!
I don't write this about people who don't agree – I can live with that. But when the tone or intent of a comment is to belittle the opinion of another person, I see insecurity behind that. I've been blogging for 4 years and have had my share (a large one) of people who disagree. I know the consequences of putting your voice out there. But misreading what I write, then misrepresenting it on another website and telling people to come over here and harass me? I would think that's not just simple disagreement.
Not that this excuses seemingly willful misunderstanding (which is what I assume you are talking about) however , what I think is going on is that people with chronic illnesses are attacked constantly. Anytime you read someone saying “all you need to do is exercise to get rid of depression” – a person with chronic depression may feel that as an attack (esp'ly as this person is likely getting it said to them on a daily basis by people in their lives.) Or “change your diet” to someone with Crohn's. (and as you saw in the comments, one woman got basically called a drug addict!)
Folks with chronic illness are constantly belittled and disbelieved by even members of their families. So…I think your very valuable post created what felt like a safe space for people to discuss what they are going through. I suspect some of what you felt as an attack was not an attack directed at you per se, and that this may give additional insight to you as to what people with chronic illness go through.
I didn't get it until I (finally) got diagnosed correctly and thank goodness ended up with a great doctor. But I went through years of being essentially called a liar by both “friends” and medical professionals.It gets wearing, and like an inflamed nerve, those feelings end up being very easy to trigger.
These reactions were not personal,they weren't about you – just like you were trying to tell the chronic illness/pain sufferers about how doctors may behave toward them.
Point taken. You realize this is exactly why I wrote the post in the 1st place.
Bingo! You hit it right on the head…..
I'm going to refer from responding to anything but the post.
My heart got too tied up in what happened yesterday, I'm going to just read the post and comment …
I'm sorry this has all happened. I, and many others, get your heart and got what you were saying.
Keep on keepin on!
If people are writing about you on another website and getting people to harass you then they are just plain and simple idiots!! Not victims but vicious and vindictive.They aren't interested in sharing an opinion or being constructively critical.They are abusive because they are full of hate or just because they have fun hijacking your blog!! They don't deserve your thoughts or wasting of your energy!!They don't deserve to be heard!!
Lovely responses – each person who has commented..
I want to add to the voices in here – as a woman, a scholar, a chronic illness patient, et al, that part of the PROCESS of dealing with finding out one has new illness is SOMETIMES the “why meee” attitude. And – sometimes – SADLY – getting sucked into the vortex of negativity and slime that abounds on the Internet.
I did not comment yesterday because I tend to avoid such hostilities… meanwhile – you handled yourself quite well… As a woman who OFTEN has to deal with “shit hitting the fan” in the media or snarky students who yell and whine – I have my own situations to diffuse and gastric juices to calm on my own… I didn't want to have to watch yours. 😉
Well done. Well said. I wish we could all learn more “netiquette” for when we disagree with each other… Hostility in, hostility out.
Meanwhile- YES- I too have been manhandled by the medical industrial complex.. it took several years to get the bad taste out of my mouth and decide to be my own hero and be in RELATIONSHIP with my doctors… I can imagine that parents of children might still be reacting.
So much food for thought… so many voices. I have often said in my classrooms and workshops that there is no single TRUTH when we learn and teach but many truth(s). Even in the sciences… imagine how many times you have seen a surgeon or physician do different techniques with the SAME result… NO SINGLE WAY… many way(s)… Our job, it appears might be to LISTEN more and REACT less? Maybe?
Thank you Doc Rob for your thoughts and your time and your forum for doing so.
Cheers, Melissa – aka DrSnit
In the end, all you have is your intentions and your intention in both of those posts was good and honorable. I have a Facebook page for my book and have had so much outpouring of good wishes that it holds me up on days when I'm feeling really sick. Then I awoke this morning to someone having posted a vitriolic tirade about me and my book. She doesn't know me (we're not even Facebook friends). She hasn't read the book because it hasn't been released yet. My initial reaction was “and same to you!” but then I thought how miserable she must be to have done that, no matter what her motive. I took a deep breath, deleted the post, and started my day anew. I'm glad to see that you seem to have done the same with your “Blast From the Past” post.
Hey, you don't know me, but as I was preparing a guest post for Erin, she linked me here. What you wrote, and the ensuing kerfluffle (by which I mean clusterfuck but I'm new here and don't necessarily want to show my foul mouth) changed that post, focused it.
I loved the post and I agree, but I think you unintentionally tapped into a specific vein of anger (resentment, rage) within the community of parents of kids with emotional and behavioral challenges feel, or have felt. You didn't mean it that way, and people should pay closer attention before they burst forth, guns blazing, but that's my sense of what happened.
Well, except for the stuff about JM and all of that. I don't understand that shit AT ALL. But my kid is mentally ill, not autistic, so the controversy and drama in my life is a different flavor. Same stuff (except I am accused of being duped BY doctors, rather than being the doctor who dupes), really, but with different symbols and faces.
Anyway, thanks for letting me ramble and I believe my guest post goes up over at Erin's blog tomorrow. I appreciate your blog and I'll be back.
No need to call off the dogs. As you may have noticed, the mob stormed through the garden, smashed down the flowers, looked around and said, “My work here is done.” They're pretty much miles down the road by now.
Sadly, some people just want to be angry. I have found this in the autism community. I have run across many of your angry commenter's in other places on the net. Sometimes I think that anger is the only thing that keeps them going..gives them a purpose. Because without it, what would they have? How could they justify accepting disability in a world that generally shuns it?
I thought that your post was lovely in its honesty. As a parent to four wonderful kids-three of whom are on the autism spectrum, I am always happy to find such positive posts. I appreciated it very much. As did many many other people.
I look forward to your posts. As someone who has had a lifetime of chronic issues and misdiagnosis, I have loved reading things from the other side of exam table. It has helped me to see my Dr's as human beings and perhaps I am a better patient for it. Thanks for helping us, as patients and doctors, to meet somewhere in the middle. Thank you!
i know im new to your blog so pardon me if i missed something……………but for
me, the letter made me appreciate that you were thinking beyond your perspective and i appreciated that. however, i didnt agree with your advice, it has not worked for me, and i said that and why. please dont take it wrong, but in a way, you are seemingly lumping all of us together who disagreed with you. sometimes when a person is in constant physical pain it is hard to get the perfect words to even describe . one thing that surprised me, if im being honest, is that a doctor that wrote such a wonderful and compassionate letter to ill people would then seem to be so defensive in the follow up posts. that was what caused me to post. not the letter. there is no gentle way to say that really and sorry if it stings a little………some of us get it totally what you say in the letter. i just disagree, its not worked for me that way, and i am as expert in saying that as you are in saying what works from a doctors angle. i have been an empowered patient for decades while also knowing my doctors are human and never wanting a cure, ……… the human element , both from within and without the medical field, will always make every one of our situations and experiences different . and we need to believe each other. also , if any person starts a blog they cannot control where it will go. that is the nature of a blog. responces wont be all lollipops and butterflies when you deal with people who are ostracised with life threatening /life changing issues……. hekatesgal hit it on the head. i am not sure many of the responces were directed to you personally……mine was not….. but i think you took it that way. thats just how i saw it. i cant say how you or they felt………… but i appreciate the letter and the effort , a human can appreciate something but not agree with its conclusions or even much of the content. it is hard to put yourself out there as you did, and for me it was hard to put myself out there as i did too. why did i? to speak for all those out there who i know are just like me but wont ever say anything or dont even have a computer. so maybe those more anger filled posts were doing the same thing, maybe thinking if enough 'people on the inside' read what they say, things may change. thats why i posted and why i encourage you in your efforts to become an 'empowered doctor'……… in that you can challenge other doctors to do better, even report incidents you see . i cant do that. you can say some things that i cant , talk to people that will take you seriously that wont give me the time of day. change for you and for me will only come when more doctors get empowered to fight for their patients more to the insurance people, the office/hospital managers,
attending doctors, all sorts of medical people who may be bullies or apathetic or lacking knowledge. in the end you wont be so burdened by patients like me becauee more doctors will be like you!!!!!!!!!so i hope you dont paint all of us who disagree with you in the same brush because that is doing exactly what you say many chronically ill do to doctors. 🙂 i dont know what else to say except thank you for putting your perspective out there………. i hope my perspective is as valid too…………….
Isn't it marvelous when you see someone with an obvious handicap live as an overcomer? When our daughter's thyroid was removed she found a beautiful butterfly tattoo that signified you were a survivor of thyroid cancer. When she showed it to me I gave a silent sigh. I am not fond of tattoos, but that's my personal preference. Anyhoo………I said to her, “But you are so much more than just a thyroid cancer survivor.” She put the idea aside, but she will be 18 years old soon and the topic came up again. She made the decision to have a foot tattoo with scripture. On the inside of one foot it would say, “II Corinthians 5:7” then on the inside of the other foot it will say, “We walk by faith..not by sight.” I sighed with delight this time because she realized on her own that her identity is in Christ. When we come to that realization we realize there are no true victims among those who believe in the Sovereignty of God (even when you are toying with thoughts that you are caught in the bad plot of a poorly written novel! <G> I realize that's oxymoronish…….but knowing God is in control, and not ourselves, is a gift beyond measure.
I see what you were trying to say however you need to reread your post. The most noticeably part that standouts at least for me is the following “Normal is overrated. Normal is arbitrary and evasive. Nobody is normal; we all bring our own uniqueness to this world that should be appreciated for what it is”.
Only a person who has never had to strive for “normal” could make a comment like that. You would have been better off simply saying “if life hands you lemons, make lemonade” or “take pleasure in the little things in life”. The comment which was meant to be encouraging at least in my eye's comes across as arrogant, and condescending.
FYI It is true that “they are unique people with their own strengths and weaknesses. They bring me joy when I see them – more joy than many “normal” kids bring,” but so do kids with Down Syndrome, and I would not wish that genetic defect on my worst enemy. In other words its hard to concentrate on the positive when it is outweighed by the negative. The parents are trying to tell you that they deal day in and day out with the children, and it is not easy to simply do as you say, I know parents who took years to simply deal with the situation emotionally much less start to look at the positive things in life. These children may bring you joy but are you dealing with them day in and day out? A more compassionate statement would have been something like “”they are unique people with their own strengths and weaknesses. They bring me joy when I see them – although they may be far from “normal” I find the autistic children's capacity for love and joy to exceed many of the so called “normal” kids, but most of the parents do not see that aspect of their children, they tend to only see the negative aspects of this condition”
I imagine the main issue you avoid to see with this article is the frustration of the parents. For example in the case of Down Syndrome they know the cause of it, but with Autism nobody can tell the parents what went wrong so they are left gasping at straws. Then they are ridiculed for grasping the straws. The parents do not want to “maintaining their status as victims” they simply want answers, and although they may learn to deal with the situation until they get them they will remain a hostile bunch.
It is to my understanding that in order to attack someone who is delusional you must present facts in order to break the delusion. I'm not saying that the parents are delusional but what I'm saying is that if you want to attack the “autism-vaccine” link you have to present some facts not just on what is not causing it but what is causing it. Its hard to prove a negative, but their would be little debate on the cause of Autism if the scientific community could prove a positive.
These are just my thoughts I hope they are taken as constructive criticism, and not as an attack. You seem like a fine pediatrician and I would take my child to you for checkups and for whatever ails them.
Well, there are 2 basic approaches to the autistic spectrum, I think, and whatever you say about autism, you're going to piss some people off. Either the parents, who want to cure their disabled children; or the autistic people themselves and their supporters, who want to find ways to help people on the spectrum achieve happiness and success however they might define it.
I happen to be on the side of autistic activists themselves, who like to use the term “neurodiversity” to refer to the many ways the human brain can work. They quite reasonably resent being represented as disabled, retarded, mentally ill, or broken people; and they deserve to be welcomed into society with all their differences recognized. They may need therapy to help them integrate, but that doesn't mean they are broken and need to be fixed.
I appreciate your tone.
The reason I wrote this is that since I've started practice, I've taken care of numerous kids with autism, down's syndrome, and other mental/emotional disorders. I've not met one of these parents who would have wished for this before it happened, but neither have I met a parent who is bitter about it. In fact, most of the parents of down's syndrome children talk about how wonderful these kids are. The parents of kids with autism are similar, except that their behavioral challenges are bigger. They do talk about how hard it is to be in their position (as do all parents of disabled children), but they do not get angry when we talk about the good things their kids bring to the table, when I take joy in their kids.
Go argue with Orac (http://scienceblogs.com/insolence) about vaccines. I have heard the arguments and don't want this blog to become a forum about the pros/cons of vaccination. I blog about other stuff – the personal side of being a doctor, mainly. I can tell you that the arguments given by the pro-vaccine side are the ones I agree with, but I'll let others do the arguing for me. I am grieved when I see children dying of vaccine-preventable diseases, and have vaccinated all of my kids without hesitation.
I absolutely hated having to turn on mediation of comments and then turn off comments completely for the previous post about autism. The reason I did was because of the folks at AoA misrepresenting me and then recommending people come over here and comment based on that misrepresentation. I hope I don't ever have to do that again, as I really like to hear opposing sides of what I think. It makes me less likely to be wrong.
Again, I really didn't mean to say that autism is the “new normal.” I meant to say that, given the hardships I see in other kids and their parents, there is a special delight I only get when seeing an autistic child. To me, this makes me wonder about what the value is of normality.
And please leave the immunization issue alone.
I have no intention of debating a doctor on immunizations, I just noticed the debate on the earlier post, and thought a separate set of eyes would help. The same thing with the “new normal”, I understood exactly what you were striving to say, but once again thought a separate set of eyes would help as the tone could be easily misread.
As a FYI I found your website as my new born is due for her first immunizations (I refused the Hep B at birth, yes I know I'm “evil” but the risk was minimal) and I'm checking the validity of the claims of the autism – vaccine link. Do not worry I will vaccinate my child! I may break the CDC recommended schedule (I need to discuss this with my pediatrician) but my daughter will get all her vaccinations.
Again just as “an extra set of eyes” as I do not to want to start a debate. Personally my investigations should have been a slam dunk in favor of the CDCFDA, that it is not just shows how far the CDCFDA have fallen. In about 50 years they have gone from being our defenders like they did when they rejected Thalidomide to being lapdogs like when they approved Avandia. As a congressional investigation put it Avandia “put public safety at risk because the FDA has been too cozy with drug makers and has been regularly outmaneuvered by companies that have a financial interest in downplaying or under-exploring potential safety risks.” I may not fully trust the CDC but I trust pediatricians like you and all the pediatrician I know (much less those I trust) urge vaccination. Please keep up the good work!
And please leave the immunization issue alone.
Oh to be so misunderstood! Are you sure you don't want your next article to be titled, “Licking One's Wounds”! <VBG> Gosh, I hate to be such a wet rag, but it is your blog, and you are offended, and you do have the right to have the last word (in your opinion) on immunizations (well…..at least how you feel…..which brings me to my point……my real point isn't even about immunizations). But what is bothering me about this thread is that some feel it's fine to label the “anti” crowd as fanatics while so vehemently (or valiantly) sharing that you have searched the truth and have come to this or that conclusion. But…..but…..I'm gettin' there……..why do we decry fairness when in truth we may very well not be exerting it ourselves? Why ask acceptance or even compliance without extending it? And why do these threads always come down to falsehoods about JM or the Imus' (when the Imus give their money and their time to helping children). Why aren't the falsehoods cleared up in the name of the truth. Neither of these are anti-immunization, they are for safe vaccines. Why is that lost in the debate?
Are we not on a quest for the truth? Can't immunizers extend the same olive branch to those who hesitate (for a real fear of harm to their child? My two-year old nephew was killed by the MMR vaccine. His parents signed a waiver so they couldn't sue, and I don't think the doctor deserved to be sued. She was so distraught she threw herself over the child's hospital bed sobbing when they had to remove life support. I believe someday a test will be available to sort out those who are susceptible to death or harm. Why can't the medical community saddle up and admit there is some harm and HELP! Back all research into finding all the causes of autism and at least admit some kids will be harmed. Gosh, all this defensiveness doesn't make for good medicine, and this thread isn't about immunizations as much as it is about the truth, the truth, the truth in medicine and doctors who are blatantly honest and admit to their patients that some harm happens but they believe in overall good. Wouldn't that just simple be more honest, because doctors are sure honest about keeping their kids from harm from plastics, from the preservative in playground equipment (even the type of base the children play on), they don't want lead in paint, they want safety at all costs…….so let's lay the cards on the table and let the patients decide instead of making them out to idiots or radicals
I don’t know how this came around to a vaccine debate, since the original post was about appreciating what “abnormal” kids have to offer the rest of us, and I think we should respect Dr Rob’s wishes not to rehash a vaccine debate that is better addressed elsewhere in the blogosphere. BUT: I will say that at least in my child’s ped practice, every vaccine administered comes with a fact sheet on known adverse effects. Every doctor, no matter how pro-vaccine, will acknowledge that some children will be harmed by vaccines; it’s a matter of weighing adverse vaccine effects against those of the disease which the vaccine prevents.
You see why I shuddered at the thought of a vaccine debate? I actually don't think parents are evil for denying immunizations. I have several who don't, and the hep B is certainly a lower risk one to skip (I think Hep A is even more so, as I never saw the disease at all prior to immunizations being recommended). I agree with the FDA comment, but the CDC is not in the same boat. Immunizations have been pulled when they caused problems, even small ones (oral polio was extremely rare with complications, but it was changed to IPV).
I don't mind questioning; it's the name-calling like you-know-who just demonstrated.
jillian, you left out a third, and very important group: parents of children (or parents of adults) with autism, who do not see their children as “formerly perfect and now damaged by vaccines”. There are many such parents — possibly more such parents than the autism-is-TOO-vaccine-injury parents.
Those parents see their children as having many challenges, which need help to either overcome or work around. Those parents work hard to get their children the help the children need to make the most of the gifts they have. They are realistic about their children's limitations, but regard those limitations as not identifying their children — the limitations don't describe the whole child.
My apologizes for the poor choice of wording. I did not want to imply that you thought parents who do not immunize were “evil”. One bad word choice changes the entire tone :-). Also my apologizes for bringing up immunizations in this thread, things get hostile real fast.
You're so patient, Dr. Rob. I have long since lost my own patience with the shrill autism parents who seem to compete for the title of Most Put-Upon. Your autism post was beautiful and respectful, and I hope you won't be intimidated by those who find status in their children's difficulties.
Jackiefox asks, “Whatever happened to “I respectfully disagree?””
I suspect the lack of this attitude is one of the basic problems that confront many people with chronic illness (especially those with puzzling or difficult to diagnose/manage conditions) when they interact with many medical professionals. There are exceptions (I am new to Dr Rob’s blog, but I gather from numerous comments that Dr Rob is one of the exceptions).
I think there might be something fundamentally wrong with the selection process for medical schools, or with the training of those who are selected. History is littered with examples of long-suffering patients who were accused of psychological afflictions (such as hysteria) by medical dogma that dictated what it didn’t understand couldn’t possibly exist; only to later discover that dysfunction of basic bits of anatomy, such as the thyroid gland, were the culprit (not the patient’s willpower or emotional makeup).
I second Clare’s comments about the condescending nature of Dr Rob’s accusation that he suspects maintenance of “victim-hood” is the motivation for some of the dissenting remarks at his earlier chronic disease and autism blogs. (Last minute additional comment: I haven’t read the comments at the autism blog; I gather some of them might be over-the-top, that’s a shame. However, I think a generalised accusation of victim-hood is undesirable.)
I am surprised that Dr Rob is surprised that his comments about autism did not go down well with some parents of autistic children. Recently our local radio (in Australia) interviewed the mother of two autistic children who has written a book about living with autism (which she approaches from a positive perspective). Having launched into a positive discussion with the mother/author (i.e. it wasn’t a woe-is-me story) the interviewer reached the point in the mother’s story where her second child was diagnosed with autism. I suspect the sanguine (uncomplaining and matter-of-fact) attitude of the mother skewed the interviewer’s senses when she cheerfully suggested that it must have been easier the second time round ~ you could have heard a pin drop (the interviewer almost certainly wished that the earth would swallow her). The mother seemed aghast that someone could suggest this. Her reply was brutally honest (perhaps partly out of shock); with emphasis she said the second diagnosis was MUCH worse than the first because the second diagnosis smashed their (the parents’) dreams that they would (after the trauma of the first child’s diagnosis) re-find their happiness with a healthy second child. The topic was quickly left behind and the interview continued in its former unsentimental and informative manner.
Dr Rob says, “I see more of God in the eyes of these people than I do the CEO’s and other “successful” people who come to my office. I see my own pride and self-centeredness, and I am grateful they show it to me.” These are fine words. Such acknowledgements help blunt the brutal reality of life with chronic disability, but how often are such sentiments stated to the patients who elicit this humility?
In the ‘Chronic Disease’ post Dr Rob suggests that doctors tend to favour self-esteem-promoting cases over humbling cases (i.e. favour easy-to-diagnose-and-treat conditions because they engender gratefulness and high regard from the patient), “… 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…”. Is this a manifestation of my aforementioned flaw in the selection process, or in the training, of medical professionals? I appreciate that doctors are “normal, fallible people”, but there are many professions where regular and easy-gained kudos is not a part of the process. Kudos that comes at the end of a hard-won battle must surely be more deserved and satisfying.
One of the most inspirational quotes that I know is from Theodore Roosevelt,
“It is not the critic that counts; not the man who points out how the strong man stumbled or where the doer of deeds could have done better. The credit belongs to the man who is actually in the arena; whose face is marred by dust and sweat and blood; who strives valiantly; who errs, and comes short again and again, because there is no effort without error and shortcomings, who does actually try to do the deed; who knows the great enthusiasm, great devotion, and spends himself in a worthy cause; who, at the worst, if he fails, at least fails while daring greatly.
Far better it is to dare mighty things, to win glorious triumph, even though checkered by failure, than to rank with those poor spirits who neither enjoy nor suffer much because they live in the grey twilight that know neither victory nor defeat.”
Just over a year ago I made a breakthrough with my chronic condition that transformed my life. It improved my functioning by around 50%. On my list of ‘things to do’ had been to find out what was involved and how to go about ending my life with the assistance of Dignitas in Switzerland. That’s no longer on my list. It took 25 years of ‘dust and sweat and blood’ for me to make that breakthrough. I doubt that anyone who has not ‘spent’ their life on a worthy cause can understand how glorious is such a triumph. The saddest aspect of my life is that there has been no one to witness just how bad things really were and no one could share in the triumph because no one spared the time to be in the arena with me. Generalising, the medical profession’s greatest skill was in pointing out the errors in my amateur attempts to solve the puzzle of my condition. When my breakthrough came a doctor seemed hurt that he could not share in the glorious triumph (he seemed to want to bathe in the glory even though he was disinterested in the battle).
Jillian suggests society needs to get better at welcoming diversity of functionality into its midst. To be sure, to be sure… This is a societal issue not just a medical one.
I suspect some people jumped on what you said because they have the attitude that you're either totally with them, and totally congruent to and supportive of their views, or you're against them. Works that way in politics, too.
Bless you for your persistence, even in the face of such misunderstandings.
I read this, and faxed it to my specialist. I promised to try to abide by it. And I’m a doctor!!! I take care of patients like this. I totally agreed with it-patients assume sometimes that they are the only patients in your practice, and the only one in your mental radar.They assume that you have memorized all 20 meds for every complicated patient, That you can keep every one of the last 5 hospitalizations straight with out referring to notes-and what they remember (the crabby nurse) and what your remember 9 the nurse that was crabby because the patient didn’t tell her about angina for 6 hours) (My favorite, “remember I told you 2 years ago the last time I saw you”)I don’t remember what my HUSBAND told me two years ago.(well, some things)We’re only human. We trying to do the best just we can, We’re under seige!!!