Tag Archives: understanding

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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Why another “awareness” day?

Today, May 12, is International ME/CFS Awareness Day. And I know what you might be thinking, because I think the same thing sometimes: “Why another awareness day? I’m aware it exists, what’s the big deal?”

ME/CFS (a term encompassing two similar or related illnesses: myalgic encephalopathy and chronic fatigue syndrome) is different from many other conditions that get awareness days and months, walks for the cure, and other support. Not only is it poorly understood and often misdiagnosed in the medical community, being something of a “trashcan diagnosis,” but that lack of understanding is far, far worse among the general public. Patients are still fighting off the terrible moniker of “yuppie flu” with which we’ve been stigmatized for decades, and in some cases they are fighting even to be recognized as ill at all.

Before I go any further, let me be perfectly clear that I am referring here only to issues of awareness. (I would not in a million years try to “one-up” people with other terrible diseases and conditions.) Would you accuse a woman with a malignancy in her breast of “just being lazy?” Or suggest to someone with a spinal cord injury that his inability to walk must be due to clinical depression?

And yet that’s exactly what people with CFS face all the time. In England, for example, there is an ongoing struggle to get the National Health Service to move away from treatments focusing mainly or solely on psychological issues, and to see ME (as it’s mostly called there) as a somatic problem. And there are other countries where ME/CFS is categorized only as a psychiatric disorder! Thankfully, change seems to be coming slowly, but that doesn’t help physically disabled people who have been told for years that cognitive behavioral therapy and antidepressants will cure them. Here in the States we are a bit luckier — that is, if you can find a doctor who knows anything about CFS and what it takes to treat it.

(“Return to the career I loved” was my entry, although I’m sure it was sent in by more than one person.)

Awareness has been raised recently by the publication of a paper suggesting a possible link between a retrovirus called XMRV and people who have ME/CFS. While this has still not yet been proven in any way — there have not yet been any successful replication or corroborative studies — the news did serve to legitimize the illness somewhat, and make it clear that people who have it aren’t just malingerers.

This is the most common perception of people with CFS. Because of the negative stigma of the disease, patients not only have to contend with daily physical symptoms of malaise, cognitive dysfunction, crushing fatigue, fever, pain, and so forth, we also have to deal with people who don’t take us seriously. I’ll be honest: when I see someone complaining about having the flu and how bad it feels, and all the sympathy they receive, sometimes I get annoyed. Not at that person, but simply because people with CFS feel like that every damn day and yet they’re far more likely to hear “But you look great!” and “It can’t be that bad.” Not to mention the classic accusations of laziness.

When I was diagnosed with CFS, I was engaged to be married, finishing my very satisfying and successful grad school work, and about to start on a college teaching career literally custom-made for me, combining my passions for TESOL (teaching English to speakers of other languages) as well as deaf education. I was barrelling through life towards my ambitions as I had for more than 30 years. And now? I had to quit that wonderful job because of my increasing disability. I can’t finish my degree because I no longer have the money or the physical capacity. My extremely modest exercise routine made me so sick I had to ditch it and take half of April to recover. Am I depressed? Hell yes, wouldn’t you be? My mind hasn’t been disabled, and I daily fight the frustration of the physical limitations that effectively put an end to everything I’d been working for my whole life. But this is secondary depression due to the physical disability. I dare any of you to accuse me of simply giving in to laziness.

And I have it so, so much better than many patients. Yes, I lost a friend who appeared to take my increasing inability to hang out with her whenever as a personal affront. (And I’m much better off for that loss.) But my closest, dearest, most important friends have stuck by me, and unlike many patients whose illness destroys their romantic relationship(s), I also have an incredibly loving, supportive, and understanding husband. I have a wonderful support system of online friends as well, who accept me for who I am, including my limitations and liabilities. And I have access to quality medical care, including a GP with a great deal of clinical experience with CFS.

Not everyone is so lucky. Many if not most CFS patients lose friends, partners, and the support of family members who do not understand that their loved one is sick. Without a palpable injury or malignancy, patients are often misdiagnosed by both doctors and laypeople as suffering from clinical depression or even bipolar disorder. Doctors without something to shrink medically or cut out of the body are often at a complete loss, and apt to hurry a patient out of their office with no answers, support, or help of any kind.

This is why awareness is so vital. Without the impetus that non-invisible illnesses gain in terms of research funding as well as patient support, ME/CFS remains a mystery. That is of course its defining trait — we patients are, all of us, medical mysteries — but the fact of its existence, the way to support patients, the need for research funds and scientific attention to be paid, are not mysteries. They are imperatives. I do not deny that the misdiagnosis can go the other way, and people who are in fact suffering from major clinical depression may be wrongly diagnosed as having CFS. But this only emphasizes the need for greater attention and understanding to be directed at ME/CFS. There is a collection of blog posts here if you wish to read more. And if you are moved to donate to some very promising research, please read my previous post. But even more than your dollars, I plead for your awareness and your understanding. Not for myself, but for all the patients out there who aren’t so lucky.

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