For those who have watched Jen Brea’s Ted Talk, or read other accounts of life with MECFS, like Julie Rehmeyer’s new book, Through the Shadowlands and my essay in Quartz a few months ago, then you know that medical neglect is a big part of the disease’s narrative.
Also within this narrative is an underlying theme of sexism. There’s no doubt that sexism, both consciously and unconsciously, is real as it pertains to people with MECFS (myalgic encephalomyelitis / chronic fatigue syndrome) and the medical professionals who treat us. In fact it seems the topic has been coming up more and more lately so I thought I would chime in.
Chronic fatigue syndrome is an incredibly patronizing name, there’s no denying that. And some feel that one reason it was given that name is because there has been a misconception that the disease only afflicts middle-aged, middle-class women. Some doctors still feel that a bunch of middle-aged women are faking their illnesses. But the truth is, every demographic is either directly or indirectly affected by this disease. Yet the misconceptions persist and there are a number of reasons.
Beyond the name CFS and the unavoidable ignorance of society (of which I took part in until I got sick at 22) is how the broader medical establishment operates when faced with uncertainty.
But also, there is a long history of sexism in the medical realm in general (read my Quartz piece if you want specific examples) with terms like “conversion disorder” and “refrigerator mothers” being freely thrown around. This broader type of sexism is a big reason why some people with MECFS feel that much of society still doesn’t consider it a serious illness.
But here’s where I take issue when the MECFS narrative turns to sexism…
an article I wrote about my regression from bodybuilder to bedbound — an essay that had little, if anything, to do with gender. I posted the article on Facebook and the woman started by saying “I think that some people will take this disease more seriously purely because you are male…”One woman recently commented on
As disheartening as it is, some people probably will take this disease more seriously merely because I am a man. But excuse me, those people are fucking idiots, and as far as I’m concerned, their opinion doesn’t matter.
Okay, now that I got that out of the way, let me tell you why I take issue with this woman’s comment. She failed to acknowledge the ignorance, neglect, and condescension that I’ve dealt with, as a man, while trying to heal myself at the hands of incompetent medical professionals and while working to legitimize this disease through my writing and advocacy. The truth is: I’ve had just as many doctors and laypeople try to delegitimize my illness as any woman I know with MECFS.
Do I think I’ve been victim to prejudice in the same way many women with MECFS have? No, not in the same way. I have, however, had my own issues with medical professionals; I’ve had doctors look at me — a young man and former bodybuilder — and say “You’re not sick, you’re healthier than I am. Do you get seasonal depression? I want you to try an antidepressant.”
Even the so-called open-minded doctors have pushed “happy pills” on me. The doctor who first diagnosed me with MECFS even wrote me a prescription for antidepressants. Her rationale was: “I can’t make you better, but if you need a check-up you can always come see me. In the meantime, try an antidepressant to keep your spirits up.” At least she was honest. Rarely does a doctor say she/he can’t help me, even when it’s the truth.
I should probably stop harping on doctors, but when I’ve heard one ask my mom, as I was too sick to speak or eat, “What does he do all day? Watch TV?” I just can’t help but be jaded. Yeah Doc, it’s Seinfeld reruns all day — a regular pleasure cruise over here.
And it isn’t just medical professionals. I have had people — good friends — ask: “Do think you just sleep all the time because you’re bored?” Ahem. Right, that must be why I couldn’t speak or eat solid food for a year and a half, too.
So while I think it’s entirely justified for women who have MECFS to voice their experiences of medical neglect at the hands of sexist doctors, I have a problem when those experiences discredit, however unconsciously, the struggles I have had with the same illness.
Similarly, a few months ago I posted an essay about what chronic illness has done to my masculinity. I got a lot of good comments from both women and men, but a specific comment from one lady really stood out:
I did not hesitate to reply:
What I left out of my reply, however, was that the article I wrote focused less on qualities and more on experiences specific to being a man, like the pressure society puts on us to be strong and healthy and to even be the breadwinner — an idea still limping along from a bygone era. I did mention some qualities that can be looked at as gender-neutral, but they were in the context of my masculinity, which obviously does not relate to both genders. My experiences with MECFS have impacted my life as a man, and I’m sorry but there’s no way to make that gender-neutral, unless you want to negate the male perspective.
So whether this woman thought I was being counterproductive to a less gender-divided society, or she thought that I was leaving women out of my description of the disease, I don’t know, but certainly neither were my intention. And regardless I think her criticism was misdirected.
As she mentioned, the vast majority of people with the disease (upwards of 70% by some estimates) are women, so if anything, exposing the disease from a male’s perspective should be a good thing, right?
While I vehemently share in the contempt that many people have toward the medical establishment being neglectful of, or sexist to, women with MECFS, I think it’s important that we not make our interactions within the MECFS community a battle of the sexes. We’re all on the same side, after all, fighting for a cause that has been neglected and abused for decades. We all have our medical horror stories, regardless of whether it’s from a woman’s perspective or a man’s. And I don’t know about you, but I want to hear from both sides. And by “sides” I mean, as I did in my Facebook comment above, each gender’s perspective, not two sides pitted against each other.
For those who are on the outside of this disease looking in, please do the same — go buy Julie’s book, read my essays, watch Jen’s Ted Talk, and read Roger King’s book, Love and Fatigue in America, about his battle with the disease. I promise, if you do, you’ll not only see commonalities, you’ll see what this disease is doing to good people.
Thanks for reading! If you agree or disagree with anything I have written in this post I welcome your comments below, but please keep it respectful.