Girl Diseases

Tis the season when TV networks rerun shows assuming that you’ll be out shopping or partying, and because just now I’m up to my armpits in the glories of the season, it occurred to me that perhaps I could fill in with a rerun of my own.

So what follows is an essay I wrote over four years ago, which originally appeared, in somewhat different form, in a now-defunct (I think) e-zine called Emerald Pillows.

Long before I composed this piece, I had written in my journal: “For a person who is sick with a long-term illness, there are two kinds of hell, and both of them can be devastating to one’s life, relationships, and career. One is the hell of being given a frightening or life-changing diagnosis. The other is the hell of being given no diagnosis at all.”

This essay is about still another kind of medical hell: Clearly having a disease, but having a disease entity that is either unique to you or that no one has as yet bothered to name.

Back in the bad old days of the early seventies, I woke up one morning to discover that I could neither bend nor straighten either of my knees. Both legs were frozen in a slightly bent position that forced me to hobble around like a cowboy who had been on a horse too long.

This malady seemingly came out of nowhere. Yes, I’d been out dancing the night before, but that activity seemed far too tame to explain the degree of pain and disability I was experiencing. That morning – and for months afterwards – the pain in both knees was absolutely excruciating.

My concerned friends made an emergency appointment with an orthopedic doctor, bundled me into a car, and rushed me off to see him. The doctor examined me carefully, took x-rays, and then explained what had happened to me.

“It’s obvious,” he said. “Last night you were out with your boyfriend, and he had a car accident, only you won’t admit it because you don’t want to get him in trouble with his parents.”

As a 21-year-old lesbian with no interest in men, I had some difficulty accepting his “diagnosis.” I fervently (and truthfully) denied that I had been in any kind of accident.

“That’s the only way this could have happened,” the doctor explained confidently. And then he added an utterance that has stayed with me all these years: “Well, thank goodness you’re not a man. It’s not like you need your knees.”

My jaw dropped. I had a quick fantasy that all over America, thousands of women who had been on their knees scrubbing floors or digging potatoes rose up as one and sang out “hallelujah!”

Now, you may think that this is just an acrimonious anecdote about an idiot doctor, but it’s more than that. You see, the frozen knees were the first inarguable evidence of the inflammatory arthritis I was developing.

Frozen knees, of course, are not a characteristic first manifestation of rheumatoid arthritis or lupus or spondylitis, but as it turned out, what I have is not exactly any one of those diseases. It’s more like a combination of aspects of all of them. Sounds nasty, huh?

And what do you suppose it is called? Nothing.

My serious, crippling, life-changing arthritis has no name.

You see, it’s a Girl Disease.

Men’s diseases are serious and have names – often the names of the men who first identified them. Alternatively, a man’s disease may be named after a famous man who has had it, like Lou Gehrig’s disease.

But have you ever heard of Sandra Bitgood’s disease? Or Letitia Jackson’s syndrome? Of course not. Women’s diseases aren’t named after women. They are often not named at all.

My doctors assure me that there are hundreds, if not thousands, of unnamed, sometimes familial, autoimmune diseases that afflict women in disproportionate numbers.

How come I can have a disease that has utterly destroyed my life, my productivity, and my happiness, and nobody’s even bothered to give it a name? Hell, even “jock itch” has a name.

Recently, I got an email from folks at a company for which I used to work. It seems that one of the men we worked with had become seriously ill. His former coworkers were scrambling to put together a tribute-cum-fundraiser to benefit him, his wife, and his children.

I do not mean to pick on this poor man, but I was sick the whole time I worked for that company. And I’ve gotten sicker since then, but no one’s thrown a tribute or a fundraiser for me.

And I was certainly not the only sick woman working for that company. Heck, one of my colleagues was “let go” because her Crohn’s Disease was having too deleterious an effect on her productivity. (But at least she had a disease that has a @%#$& name.)

Instead of putting energy into studying and understanding the autoimmune diseases that affect women in vastly disproportionate numbers, the medical establishment seems to put its energy into minimizing or questioning the reality of women’s illnesses.

I read a study that was done on the children of sick women, which found that these kids took more sick days than the kids of healthy mothers. The authors’ conclusion? These kids were “learning the sick role” from their supposedly sick mothers. Apparently, it never occurred to these idiots that maybe, genetics being what it is, the children of sick mothers might be more predisposed to illness themselves.

And how many times have you heard about some (usually male) doctor who “doesn’t believe in fibromyalgia”? Doesn’t believe? We’re not talking about Peter Pan or the Pope. We’re talking about the suffering and struggle of millions of women. And some of their doctors, instead of trying to understand and help them, stand around debating whether or not what they have is a “real” illness.

It’s time that the medical establishment faced up to their ingrained and continuing misogyny.

Also, it’s time that the women’s movement realized that breast cancer and abortion are hardly the beginning and the end of women’s health problems. Someone needs to tell Gloria and the rest of the gang that we are more than our tits and wombs.

Perhaps homosexuality used to be the “love that dare not speak its name,” but at least it had a name. For thousands (and thousands) of sick women, they don’t even have a name for what ails them.

Copyright © 2005, 2009 by Candace L. Van Auken. All rights reserved.

I am a writer and an activist for people who are disabled by chronic illness. I am also interested in issues related to the LGBTQIA community and to women making music.

Tagged with: , ,
Posted in Autoimmune diseases, Chronic illness, Women's health
One comment on “Girl Diseases
  1. I’ve been reading you for only a week or two and I’ve enjoyed it, even though I disagreed with you a little bit on the fructose issue. 🙂

    I’m seeing this post for the first time today and it means a lot to me. As someone with lots of girl diseases (IBS/SIBO/undiagnosed hypothyroid/fibromyalgia,) I can only say thanks for writing it and if I was a casual reader before, I’m a regular one now!

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December 2009
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