Skeptics with chronic pain conditions: yes, we exist

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 serious, anaphylaxis-causing allergic reactions amongst them).

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 here on FHM. 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 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, that is).

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. Skeptics with these 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 anyone is willing to hear us out–and examine their own attitudes and assumptions–when it comes to these issues.

Anna Hamilton (nom de web Annaham) is a freelancer, web content writer and cartoonist currently residing in central California. She is one of the founding bloggers of FWD/Feminists with Disabilities. You can visit her blog at http://annaham.net.

9 Thoughts on “Skeptics with chronic pain conditions: yes, we exist

  1. tiggerthewing on June 15, 2013 at 3:42 pm said:

    As someone who also has chronic health conditions, I agree that our experience is regularly erased, ignored, belittled by everyone. Including health professionals. It doubly sucks when people who should be our allies regard us, if they bother to notice us at all, as traitors to The Cause.

    I’m far from the only person who has had to fight for years or decades for an accurate diagnosis of various disorders and differences, solely because of my female body; it seems to be a common occurance amongst women I know that major disorders are diagnosed as something else entirely (usually ‘mental’ or ‘psychosomatic’ if not outright imaginary*). You’d think that would be a feminist issue, wouldn’t you?

    Because of that history of not being believed, and of living in a society that makes it plain that it despises those who aren’t strong, I’ve always felt pressured to push myself beyond my capabilities so as not to be perceived as ‘weak’ or ‘lazy’. Even now, I feel guilty that I need to use a wheelchair – aged 55, twenty years older than most people with my conditions have to start using one – which is utterly ridiculous, when you think about it.

    I shouldn’t have to be strong to be seen as valuable. No-one should, regardless of whereabouts on the gender spectrum they see themselves. The very concept that “woman is valuable because she is just as strong as man” is buying into the patriarchical trope that weak = less than fully human (and into the gender binary, too) and saying “But I’m fully human, because I’m not weak!” instead of saying “Strength or the lack of it has nothing whatsoever to do with one’s humanity or human rights.”

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~
    *A teal deer of a footnote:

    As those of you with chronic conditions know, I’m not exaggerating about the time taken to get a correct diagnosis. And for people unfortunate enough to have a whole slew of problems, it is even worse.

    For decades, my atrial fibrillation (which was triggered by glandular fever when I was 17) was labelled ‘panic attacks’ and my angina (which started when I was 39) was called and treated as ‘indigestion’. Both were diagnosed when I was 49 after the correct tests were finally done.

    My ankylosing spondylitis was labelled ‘back strain from pregnancy’ for years, even though I’d been suffering severe pain for months before I even conceived my first child. Finally, twelve years after I first went to a doctor about my painful lower spine, I had my first bout of iritis/uveitis and was sent to Guy’s Hospital in London for a correct diagnosis. The inflammation was so bad that the rheumatologist said she’d never seen anyone with such hot hips (as she put it! :D ) who could still walk – and yet my (female) GP at the time had previously criticised my using walking sticks as ‘embarrassing’.

    On top of that, I have Ehlers-Danlos Syndrome – which is probably the underlying cause of my cardiovascular and gastro-intestinal disorders, as well as the musculo-skeletal pain and inflammation that isn’t due to the ank. spond. – and that was only picked up this year. Which was the greatest stroke of health-related luck I’ve had in the longest time.

    This diagnosis means that when I had to get a new GP when I moved back to Ireland (my previous one had retired while I was in Australia), instead of my previous experience with new doctors of reciting a long list of apparently unrelated disorders that would get them thinking of me as a hypochondriac before I even got to hand over the diagnosis letters, I could start by telling her about the EDS. Then SHE asked ME how the syndrome affects me and was actually thrilled to be handed over a three-inch-thick folder of material about all the tests, interventions, surgeries, procedures and treatments I’ve had over the last eight years (she borrowed it to take it home to read).

  2. and then dump some class based intersectionality on top of that, especially in the US, and you end up with people who are well and truly fucked; not only are you going to get diagnosed as “weak female”, but also as “lazy liar who wants on disability”; and that’s assuming you can go in for a diagnosis in the first place (disclaimer: this is a 2nd hand distillation of experiences shared with me by other poor, non-traditional students/co-workers over the course of several years)

    on a separate note, the “scientism” that is occasionally talked about by people like Sikivu Hutchinson is most easily seen in medicine, I think. It’s this odd conviction that the current state of knowledge about not particularly well understood conditions, medicines, etc. is pretty close to all there is to the condition is extremely harmful. I only know this from the mental health (specifically, depression) perspective; being told the 1960′s version of what causes depression by the person I was putting my trust into to help me treat my depression was deeply non-reassuring… and I didn’t correct her, of course. Because at that point I was just glad someone was at least taking me seriously when I said I was depressed. I suspect it’s similar with pain conditions and other not well-understood health problems: if the currend medical science knows little about it, then clearly there must be little to it, and you’re just making it up blah blah. And then when you finally get someone to believe you/diagnose you correctly, they might still come at you with archaic understanding and biases, and what are you going to do about it? find someone “better”, when that was the first person in fuck knows how many to even acknowledge what’s wrong with you?

  3. not only are you going to get diagnosed as “weak female”, but also as “lazy liar who wants on disability”;

    This increasingly happens in the UK, too. You may have heard about Atos Healthcare, the company hired to conduct “work capability assessments” for disabled benefit claimants, and their tendency to declare everyone who isn’t actually dead “fit for work”. There’s so much hostility directed towards people who claim benefits, who get stigmatized as “lazy” and accused of faking their disabilities.

  4. Tigger_the_Wing on June 16, 2013 at 4:46 am said:
    not only are you going to get diagnosed as “weak female”, but also as “lazy liar who wants on disability”;

    This increasingly happens in the UK, too. You may have heard about Atos Healthcare, the company hired to conduct “work capability assessments” for disabled benefit claimants, and their tendency to declare everyone who isn’t actually dead “fit for work”. There’s so much hostility directed towards people who claim benefits, who get stigmatized as “lazy” and accused of faking their disabilities.

    And I internalised these messages from an early age, so when I found myself actually requiring these services and benefits I felt embarrassed and ashamed.

    The weird thing is, I would tell anyone else with any disability whatsoever that they deserve the help of society; that a society that doesn’t help its members isn’t worthy of being called civilised; that they aren’t weak or lazy for needing or accepting help; that everyone needs to rely on social services at least once in their lives and there is no shame attached to accessing that help.

    Why can I not convince myself of that?

    You know, the only reason I can bring myself to ask for help is that it will make life easier for my carers.

    Isn’t that sad?

  5. Tigger_the_Wing on June 16, 2013 at 4:53 am said:

    And I think that it is largely because I’ve always felt that I have to be the strong one, the one who never gives up, never gives in; the rock on which the family can anchor itself; because to display any weakness whatsoever is to invite the unnamed horrors beyond the campfire to descend en masse and tear us to pieces.

    And I must never, ever show my fear…

  6. Apologies for focusing on a minor detail while seeming to ignore the larger and more important points. But.
    The idea that “[multiple sclerosis] used to be thought of as psychosomatic” is absolutely absurd. I had a favorite uncle waste away and die of MS in the 1960s and I can assure all concerned that the physical manifestations of the disease were–have always been–all too obvious, even if central demyelination hadn’t yet been specifically identified as part of the mechanism.

    More generally, I certainly do not discount or minimize the real suffering people experience, whether easily explained physiologically or not. Things like CFS, fibromyalgia, chronic Lyme, and other syndromes that have (as yet) no known mechanistic etiology may indeed turn out to be “real” as we learn more. Or they may not. Unfortunately, the credibility of people who accept such diagnoses as black-box explanations is somewhat undermined by the equally sincere and convinced people talking about stuff like Morgellon’s disease.

  7. MaryKay on June 16, 2013 at 3:41 pm said:

    One of the biggest problems I deal with as a person with Joint Hypermobility Syndrome (a chronic pain condition with some similarities to EDS) is that I don’t actually *look* disabled (no cane — yet) and while strangers can’t really be expected to have a clue, you’d think my friends suspect I might have a problem. My friends all seem to ‘forget’ that I have problems and I have explained it over and over and over. Some of them still seem to have a problem remembering. How can my friends, mostly good, kind, liberal feminists . Keep forgetting I have a disability? That stairs are hard, that I can’t move as fast as I used to, that it taks me a while to be functional and ready for life in the mornings. That I run out of spoons. Does anyone have good strategies for dealing with this?
    MKK

  8. As someone who also has Hypermobility Syndrome (in addition to several other hidden disabilities), I have to agree!

    I once visited a psychologist who diagnosed me with “attention-seeking behavior”. Er, aren’t you /supposed/ to seek attention when you have problems?! He further claimed my problems were “psychosomatic” and not what a previous psychiatrist had diagnosed. (Never went back to him again.)

    MaryKay, one tip I can give you is to wake up and take your pain (etc.) meds about an hour before getting up. (Of course, this requires that you remember the night before to put a drink safely near your bed.) That way the medication has kicked in by the time you have to get up.

    I also gather together all my clothes for the next day (down to socks, shoes and belt) the night before. Somehow it’s much more time-consuming and difficult doing so in the morning. I also leave shirts buttoned except for the top two, so I only have to do one button when dressing (three if the cuffs are narrow).

    Ditto packing lunch the night before. (I have ADHD, too. Anything last minute only adds to the getting out the door on time problem.)

    I have a folding cane with an ergonomic grip; it’s really handy to pull out when you’re worn down, not just for you, but as a reminder to others. A cane (or walking stick, if that term suits you better (-; ) is not an all-or-nothing tool. Because it folds up, it’s easier to carry about and pull out as needed. (It’s kinda fun actually; the elastic cord inside makes it just click-click locked extended. Practice that with a flourish!)

    When it’s not summer, I also have a pair of Thermoskin gloves I’ll wear off and on during the day for my Reynaud’s Syndrome (cold hands) and arthritis. They’ve no fingertips, so I can work with them on, and are a black fish scale pattern, rather than the dreaded medical beige — they almost look “cool”!

    I’ve also learned to keep a set of AM and PM meds in my purse, in case I forget a dose. Working 13 hours with neither ADHD nor pain meds is dreadful. (Thankfully I don’t do both jobs every day.)

    I realised this morning that I need to set a timer on my phone to take my evening meds some 12 hours later, which is to say, /not/ after I get home from my evening job, and finally go to bed.

    Hope those ideas help,
    Andrea

    https://www.facebook.com/andreas.buzzing
    https://twitter.com/AndreasBuzzing

  9. MaryKay on June 24, 2013 at 5:28 pm said:

    Andrea thanks so much! (My other invisible disabilities are arthritis, depression, & anxiety. The latter two greatly ameliorated by meds.) I do a number of the things you suggest, though not the collapsible cane. Might try that, though one of the places I have a lot of pain is hands/wrists. I was hoping for suggestions on how to deal my friends’ faulty memories! Thanks for responding.
    MKK

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