Bitten and shy

There is an ongoing war, as well there should be, waged by the proponents of medical science against those who reject, demonize, deny or misuse it. The war takes place on many fronts and on many levels, and some successes include the continuing downfall of Andrew Wakefield and the pronouncement by the British Medical Association that homeopathy is “witchcraft.”

Skeptics generally don’t have much use for people who have rejected medical science, or “allopathy” as some of those people would have it. (A term, by the way, invented by the guy who made up homeopathy.) Such people are usually characterized as, variously or in combination, stupid, ignorant, denialist, uneducated, brainwashed, crazy, deluded, superstitious, and even dangerous, to themselves or others.

And some of them are. The homeopath who killed his daughter by refusing actual medical treatment for her eczema is dangerous and possibly crazy. Religious objectors to blood transfusions and chemotherapy are superstitious. The scared parents of autistic children who throw in their lot with the anti-vaccination movement are poorly educated on the topic of vaccines. And then there’s people like the Health Ranger and J.B. Handley and so on, people who I won’t dignify with a link, but to whom I am happy to apply some if not all of the above epithets — and worse.

But there’s a certain population that I believe deserves greater compassion and understanding. People with long-term, incurable chronic illnesses may often come to reject science-based medicine because they themselves have come to actual harm from it, and sometimes repeatedly. I’m not talking about hypochondria or persecution complexes. I’m talking about people who have undergone actual trauma, mental or physical, at the hands of medical doctors. For example, this link is not from the most reliable site, but the incidents related are far from unheard of in the ME/CFS community — misdiagnoses, harmful biases, lack of understanding about the illness, and worse.

Don’t get me wrong. I’m not giving anyone a pass. I went through a hellish time when I was diagnosed with Graves’ and the incompetent idiot of an endocrinologist overdosed me so heavily on anti-thyroid medication, it took a year for me to recover from being seriously hypothyroid, during which time several other problems arose that have left me disabled. After that it took uninterested doctor after uninterested doctor before I found one who not only gave a crap that I was no longer able to function, but even cared enough to treat me! Oh yes, I was bitter. But rejecting science altogether because of your bad experiences is like never reading a book again because you thought Twilight was a piece of excrement. All of this taught me how to better evaluate doctors, and since then my experiences with physicians have improved greatly.

So this is not an apologia, but rather a plea for understanding. The people I’m talking about haven’t simply slipped into a life of hippy-dippy naturopathy due to the toxins in the air and the mercury in vaccines. They have been physically injured, had their illnesses worsened, been humiliated and brushed off and laughed at and completely invalidated by physicians, all the while struggling to cope with being sick or disabled. Not only has science “failed” these patients (as they see it) by not having provided a cure or even a treatment for some of those illnesses, but its individual representatives have personally failed them as well. These people don’t just imagine they’ve been done wrong by science, like the antivaxxers — they legitimately have been, just as my being overmedicated and spending months in “hypo hell” were not figments of my imagination.

If you put yourself into that position, I don’t think it’s too hard to see why someone might eventually give up on science, especially someone who has undergone years if not decades of these problems. Maybe they turn to homeopaths and naturopaths, who of course profess deep caring and understanding because they literally have nothing else to offer…but it’s attractive to patients who have been routinely dismissed by “allopaths.” Or maybe they glom on to what looks like science — such as a single, as yet unreplicated XMRV study — but refuse to let the actual scientific process take place before canonizing its researcher and creating a cult of personality, not of logic or evidence. Neither situation is positive and, again, I am not excusing people on the basis of what they’ve gone through. It is very hard to hang on to one’s critical thinking in these situations, but that doesn’t make it okay to give in to paranoia and superstition.

From a page titled "Nazi Connections to Allopathy." Seriously.

When it comes to winning back the minds of patients who have retreated from science as a reaction to their experiences, perhaps skeptics need to take a different tack. Some people go down the rabbit hole and never come back, of course. (And I always wonder about those anti-science converts and what’s going to happen on the day that science produces a cure or treatment for their illness, the one that homeopathy will never come up with. Will they reject it on principle? Unlikely.) I’m not talking about them, because why fight a battle you can’t win? But I truly believe skeptics need to stop lumping all these “denialists” into the same camp. Promoters of science-based medicine will occasionally throw a bone in the direction of “feeling sympathy for these people but…“, a statement unlikely to reach someone who has heard this line zillions of times. True compassion, however, just might.

We skeptics constantly exhort people to stay open-minded and thoughtful about these subjects, but the same onus is upon us. Assumptions about the reasons and motivations behind people’s rejection of medical science do nobody any good. Sick, exhausted, cognitively impaired patients do not deserve to be tarred with the same brush as those who actively seek the defamation and destruction of medical scientists. To people for whom there is no medicine other than Western scientific medicine, any rejection of that may seem intolerable, no matter what the reason. But the reason truly matters, because when you ignore that, you may be ignoring someone you could help, if only you hadn’t written them off like they’ve been written off so many times before.

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15 Responses to Bitten and shy

  1. I appreciate your article; you seem like a thoughtful man. I agree with you completely regarding people who reject empirical medical treatment because of genuinely negative experiences because I think you’re right, they do deserve compassion from those of us who are skeptics. That said, I’d be curious to know what percentage of the overall homeopathic crowd these people account for. I don’t have the data, but my gut tells me it’s small.

    • John, you DO see the irony in your statement that you do not have the data but your gut tells you the number is small, right?

      Skeptic intuition is no better than ANYONE’s intuition.

      Excellent post Joey!

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  3. An excellent and thought-provoking piece. Skeptics can be just as guilty of mental shorthand as science deniers, unfortunately. Lumping everyone who distrusts scientific medicine together as denialists is just as fallacious as crying “big pharma” at every turn. Thank you for pointing that out in such a thoughtful way.

  4. I love this post for a lot of reasons. I’ve been pretty lucky both in terms of my own health and the doctors I’ve encountered. But as a teenager I saw both my parents misdiagnosed for conditions that could and should have been very easily caught and instead became life threatening. Ironically, the internist who misdiagnosed my mother was head of the Canadian Medical Association at the time, and it was her GP – who was obviously a brilliant diagnostician – who finally figured out what was wrong with her.

    More important though, the hardline taken by so many in the skeptics movement is counter-productive because all it does it entrench opposition. If you tell someone they’re stupid because of their beliefs, there’s little room left for negotiation – much less rapprochement.

  5. I am also a skeptic and have had my share of quack doctors. The way doctors are deified in our society makes it hard for people to believe that doctors are…just people, too. So at times, they go to extremes and after a few run ins, or more than a few, with an incompetent doctor, start believing that all medical professionals are bought off by pharmaceutical companies…etc.

    With me, it was an incorrect diagnosis of Bipolar Disorder after a nervous breakdown as a teenager. I was given just about every anti-depressant on the market, almost every anti-psychotic, and suffer from (speech and memory-related) brain damage. I cant say for certain that it was the year and a half on sometimes very serious medication (like the large dosages of Lithium) that caused it…but it seems to me it is the most likely cause, as I had never had a stutter or suffered from random bouts of vertigo before.

    It kept me out of doctors offices for a long time, but as you related, I learned how to differentiate doctors from idiots with doctor in front of their name.

    • Thanks for sharing your experience. It’s exactly stories like yours that make it impossible for me to simply write off people who have become leery of medical doctors. I’m sorry that you went through what you did, but glad to hear it didn’t send you permanently to the “dark side.” ;-)

  6. “And I always wonder about those anti-science converts and what’s going to happen on the day that science produces a cure or treatment for their illness, the one that homeopathy will never come up with.”

    That may be testable. Has anybody looked into the way alternative medicine dealth with stomach ulcers prior to the development of a treatment for H. Pylori?

  7. Wilhelmina Jenkins

    Very compassionate; very thoughtful. The CFS community has been mistreated by the medical community so completely that anyone who acknowledges that CFS is a terrible, debilitating, life-crushing illness becomes a “hero”, whether the treatments they suggest are medically sound or not. As long as treatments are not dangerous (and many are) and the patient will not drive themselves and their families into bankruptcy (many have), all I can say to those trying alternatives is, “Good luck! I hope you feel better.”

    • Yes, that’s a good point: the CFS community can be known to overcorrect in the other direction on certain issues. For example, due to Simon Wessley’s CBT/GET obsession, some patients have come to see any suggestion of psychotherapy as an automatic — and terribly offensive! — denial of their illness. Or the situation you mention. These overcorrections are misguided at best and dangerous at worst, but I also think they’re understandable.

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  9. This is a very thoughtful post, and I think the most important part of it is that you are able to emphasize the compassion required to be a doctor or other health professional. The greatest challenge of being involved with people who have conditions which are not currently understood or curable is that doctors are trained to be effective and right, and they naturally are challenged by those whose problems prevent them from being so. I can absolutely understand the allure of people promising to have the answers that have been denied you so far, and you eloquently point out the awkwardness we often feel at pointing out that fellow sufferers may be ‘praying to the wrong gods’ to help them.

    As a critical-thinking rehabilitation physician I subscribe to the point of view outlined in this article..

    http://www.informaworld.com/smpp/content~content=a917514131~db=all

    which summarizes the prescription of placebo treatments as ‘Medicine’s ongoing quest to avoid relationships with patients’. Treating sufferers of illness with humanism and compassion in the finest tradition of the profession remaisn a fundamental ethical requirement for all healthcare professionals, and my thanks to you for pointing it out so well.

    • And thank you for bringing a physician’s perspective to this. I definitely see my doctor’s frustration with my myriad medical mysteries. I’m lucky that he shares those frustrations with me in a productive way instead of simply writing me off, as happens with many patients. Based on your comment I don’t imagine that happens to your patients, however.

  10. I think it would be very interesting to see just who is using alt-med services. I’ve used them myself when I was trying to get pregnant and taking a few months to get an appointment with my obgyn. I’d suspect that there would be a good proportion of people with difficult/unexplained diagnoses or dealing with chronic painful conditions. On infertility forums there are many people asking about acupuncture/naturopaths etc.

  11. Thanks for acknowledging the seriousness of ME/CFS and the utter failure of medical science to deal appropriately with this disease. While some ME/CFS patients report finding some relief through naturopathy, many others try that and say it’s not worth the money, and go back to being essentially untreated, or at least severely undertreated.

    There actually is a lot of good science showing medical causations for this disease, from low NK cell function and abnormal T cell activation, to bioenergetic muscle cell dysfunction, to sleep disruptions, to in many cases cardivascular abnormalities, and in some cases endocrine disruptions. This science remains unacknowledged by health authorities. They get away with this by using bad definitions which include a lot of people with other, unrelated, disorders, including primary depression; so it is made to appear that these abnormalities do not extend to the whole “CFS” group. All of this is documented in the literature.

    http://www.sunherald.com/2010/10/09/2540450/chronic-fatigue-puts-millions.html

    http://www.cfids-cab.org/MESA/Jason-10.pdf (Dr. Jasons’s study in Journ Disabil Pol Studies; which article is not indexed on pub med, in an apparent political move)

    http://www.scipub.org/fulltext/ajbb/ajbb62120-135.pdf

    http://www.ncbi.nlm.nih.gov/pubmed/20520837
    http://www.ncbi.nlm.nih.gov/pubmed/19457057
    http://www.ncbi.nlm.nih.gov/pubmed/12920435
    http://www.ncbi.nlm.nih.gov/pubmed/17693977
    http://www.ncbi.nlm.nih.gov/pubmed/19647494
    http://www.ncbi.nlm.nih.gov/pubmed/20497461
    http://www.ncbi.nlm.nih.gov/pubmed/20032425
    http://www.ncbi.nlm.nih.gov/pubmed/19015737
    http://www.ncbi.nlm.nih.gov/pubmed/12362846
    http://www.ncbi.nlm.nih.gov/pubmed/12629919
    http://www.ncbi.nlm.nih.gov/pubmed/18486415
    http://www.ncbi.nlm.nih.gov/pubmed/12069870

    PS – CFS Central is absolutely a reliable site. Midy Kitei is one of those rare people who has no chronic disease herself or in her family but simply has the sense and compassion to see that there is a population in need of a voice. She attends official ME/CFS meetings and keeps up on all the goings on related to ME/CFS and reports on all this on her blog. Regular news outlets generally publish only the sanitized version of CFS approved by the HHS/NIH/CDC/NICE.