I’ve been a lurker in the online skeptic community for a long time. I am also a feminist with fibromyalgia and several other health conditions (lifelong cerebral palsy and debilitating allergic reactions amongst them).
Whether it’s Dawkins-style puffery on which health conditions “actually exist” versus which are “somatization disorders” or, say, discussions of chronic illnesses that reduce said illnesses to strictly theoretical exercises instead of things (albeit misunderstood things) that impact peoples’ lives, there appears to be an unwillingness to make space for–and listen to–people with those very conditions.
Now, the notion of a skeptic and atheist with a “controversial” health condition will seem strange to some, and even stranger still because of the relative absence of skeptics with disabilities, chronic illnesses, and chronic health conditions in the online skeptic community. The feminist community — even online, where things like gender, ability, race, class, age, and sexuality supposedly “don’t matter” — suffers from similar problems when it comes to including and welcoming people with disabilities, as Neurodivergent K outlined in this excellent post at Feminist Hivemind. The old second-wave canard that women are physically strong is an unquestioned assumption in many modern feminist circles — and has the effect, unintended or not, of leaving out women with disabilities who are not strong or whose health conditions prevent them from being physical dynamos. The idea that chronic illnesses and disabilities like Chronic Fatigue Syndrome, Fibromyalgia and related pain/fatigue conditions are bad for the feminist movement–because women with these conditions apparently fulfill the stereotype of women as “weak” and fragile–has also gained some traction in feminist theory, most notably from feminist literary critic Elaine Showalter, who wrote a book in the late 1990s positing that CFS, Gulf War Syndrome and other “controversial” illnesses were media-spread, hysteria-driven epidemics comparable to alien abduction. Add to this the blithe unconcern that mainstream feminism has with disabilities of all kinds–and with women who have disabilities–and you’ve got a fairly unsafe environment for feminists of all genders who happen to have disabilities, or who think that (GASP) disability, chronic pain, and illness are feminist issues! After a while, it starts to look like current online “feminism” is only concerned about fighting for the rights of abled women–those without chronic pain, illness(es), physical disabilities, mental health conditions or who are neuroatypical. Thanks, feminism!
The skeptical community, it seems to me, isn’t much of an improvement as far as including people with disabilities and chronic health conditions goes. Whether it’s Dawkins-style puffery on which health conditions “actually exist” versus which are “somatization disorders” or, say, discussions of chronic illnesses that reduce said illnesses to strictly theoretical exercises instead of things (albeit misunderstood things) that impact peoples’ lives, there appears to be an unwillingness to make space for–and listen to–people with those very conditions. I’m not saying that we should simply throw out a science-based medical consideration of “controversial” health conditions and just rely on patient anecdata; far from it. But it’s important to keep in mind that “controversial” health conditions, chronic pain conditions, and some disabilities are currently poorly understood in the medical and scientific communities (remember MS, which used to be thought of as psychosomatic…and then turned out be a serious neurological disease?)–and that does not mean that they are not real. There’s a gender component at work here as well (which makes it a feminist issue): women tend to be diagnosed with illnesses and pain conditions such as CFS and Fibromyalgia at a much higher rate than men. To see these health conditions dismissed in comment threads by some “skeptics” as just the complaints of the “obese” and mentally ill recalls, in my mind, the dismissal of women with “hysteria” and neurasthenia as weak, crazy, and faking physical symptoms by doctors of centuries past. According to some skeptics, people (read: women, since the gender ratio is so skewed) with CFS, Fibro and other conditions are exaggerating! They just want attention in order to gain stuff from their illness(es)! (Freud said it, so it must be true, right?) But MAYBE it IS all in their heads! Why are you so hostile to maybe having a mental health condition or something?
Certainly, the examples linked from the above comment thread are extreme, and certainly not representative of all skeptics’ opinions on chronic illness and pain. Drs. Steven Novella and David Gorksi have both written about Fibromyalgia before in compelling ways, and the coverage of CFS on Science-Based Medicine is usually on point and very informative, even if some of the comments are not. But many of the skeptical attitudes displayed in that particular thread (and this one, too) can be found amongst medical professionals with larger platforms, and in much of the appallingly bad coverage that chronic pain conditions tend to get in the mainstream media (when they are covered at all).
It’s interesting, too, that a movement founded in part on principles of rigorously questioning and debunking mainstream thinking on a whole host of issues — religious beliefs, evangelical Christian exceptionalism in the U.S., the many manifestations of anti-science fuckery, woo, bad science and health reporting in the media, and much more — can still be so mainstream when it comes to health conditions, disabilities and chronic pain that science and medicine have yet to truly understand.
Things seem to be changing, albeit slowly–the recently-launched website Chronically Skeptical serves as a fantastic clearinghouse of information for people with chronic pain, illness, and mental health issues who are interested in evidence-based treatments for chronic conditions. Their introductory page notes that “On-line forums of this nature, particularly those for sufferers of chronic or difficult-to-cure conditions, are all too often riddled with practitioners of, and advocates for, homeopathy, reiki, chinese herbal medicine, acupuncture, faith-healing and a whole host of other treatments that have either been proven not to work, or not proven to work. We aim to avoid this, by building a community of those of a more skeptical nature, where nothing is unquestionable, and scientific evidence and practice are held dear.” The excellent skeptical resource Quackwatch, in addition to containing pages and pages of information on scientifically questionable treatments, features a few very in-depth pages on fibromyalgia–and the misconceptions surrounding the condition–that have been on the site since 2000.
Skeptics with chronic pain, illnesses and hard-to-understand medical conditions have a lot to add to conversations about alternative medicine, illness and health, the doctor/patient relationship, the downsides to so-called “positive thinking,” and, yes, gender issues and their intersections with chronic pain/illness. The question that remains to be answered, however, is if the skeptical community is willing to hear us out–and examine their own attitudes and assumptions–when it comes to these issues.
[An earlier version of this piece was published at Feminist Hivemind.]