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The American Caliban

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Female Trouble [Aug. 17th, 2005|12:04 pm]
The American Caliban
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There is a disease that middle-class American women get. Its symptoms are exhaustion, headache, lassitude, unexplained fevers and aches, and a depressive inability to progress. This disease has been renamed several times. At one point it was assumed to be the result of hormone problems. Other culprits have been anemia, depression, thyroid imbalance, and allergies. Some insist that American middle-class women have dietary problems. Ten or 15 years ago, a new diagnosis for these women arrived: chronic fatigue syndrome. This mysterious ailment, possibly caused by an infectious agent, fit all the symptoms, and everyone fell on it with glad cries.

Anemia, thyroid dysfunction and the rest are all real diseases, and so was CFS. But the medical and scientific world found CFS a hard sell. The earliest cases were from wealthy suburban women who get written off by doctors, because they had that disease that all of them seemed to get.

Middle-class American women had always felt tired and crappy and got mysterious diseases. When you're making 64 cents on the dollar, expected to care for children and be an economic provider simultaneously, constantly at risk from sexual assault and domestic violence, and generally treated as a second class citizen, it's hard to be consistently energetic. And since trying to change any of these things makes you even more of a social outcast, there aren't a lot of solutions to your problem. Intelligent, well-educated women have good reasons to feel defeated. Any disease that gets renamed several times may well be a hidden social problem.

So, aside from the galaxy of diseases these people may have, they have excellent reasons for feeling like shit all the time and preferring to collapse and stare unhappily at the ceiling. But because of the nature of the social problem they're facing, they get blamed for that too. Doctors prescribe tranquilizers, or iron pills, or vitamins, or just tell them they're having female trouble.

So far, this is all a cliché. An unsolved social problem manifests as a disease and is patched over with nebulous illnesses and hypocrisy. The difference is that Chronic Fatigue Syndrome described a real disease, or perhaps several diseases. Hillary Johnson's excellent book Osler's Web tells the story of how difficult it was for the physicians who reported the problem to convince anyone that this wasn't "just" the social problem or the hallucination of well-heeled ladies with issues. People with CFS couldn't get out of bed for months at a time, found moderate exercise debilitating, felt terrible pain, and had their lives ruined for years.

So CFS was a hard sell because physicians were used to ignoring a social problem that showed up as a disease, and because the social problem itself made them more likely to write off their patients. But it gets worse.

When chronic fatigue syndrome became publicly known, everyone got it. The often renamed disease of American women had a new name, and newspaper editors ran the story like that; if you're always tired and can't get your shit together, here's your diagnosis. Talk shows and popular magazines used the "epidemic" word a lot. Huge numbers of people self-diagnosed, and in fact were pretty annoying about it.

So to this day if someone says "I have CFS" people are suspicious. It's too easy as a universal excuse for unhappy American ladies. Are you for real? Are you a malingerer, disease collector? The social problem wins over the medical one. And meanwhile, people who are actually fighting this mysterious ailment get a social stigma on top of a debilitating life-stealing ailment. Until we make some progress on the actual problems of women in our society, this pattern will repeat.

Why do I re-tell this story? Because of Asperger's syndrome. A hilarious entry in the Encyclopedia Dramatica reminded me that it's not just middle-class American women who need to turn their social problems into diseases; middle-class American geek guys do it too. If you don't get along too well with people, have obsessive hobbies, do well in academics but not in life, you can now assign yourself a diagnosis rather than an epithet. There are no doubt many people with serious problems that this diagnosis fits, but there are uncountably many more people with neurotic personality issues who cling to a diagnosis.

Why do I find the E.D. entry on Asperger's funny? Because almost none of the people who claim this disease are that badly off. They're just geeks. The social problem they're masking with a diagnosis is thoroughly personal.

It's a lot worse that we're stuck using diagnoses to solve a problem that we could have solved 25 years ago when we tragically and unaccountably failed as a national to give women equal rights under the law.

On our next episode of "Let's Make it a Diagnosis": the changing face of Bad Kids, or how ADHD didn't get properly investigated for 30 years.

[User Picture]From: bruisedhips
2005-08-17 07:44 pm (UTC)
is fibromyalgia the same thing as CFS?
I'm confused a lot by that.
I was "diagnosed" with CFS by a great, wise Indian doctor about 10 years ago when I wasn't benefiting from any of the meds I was on for what everyone said was Bipolar depression.
She asked me a battery of questions and even tested my immune system. When she found out I had "Mono" (from ABC gum, not kissing, I swear!) twice as a child she insisted it was CFS and put me on Wellbutrin which pretty much dug my cold dead body out of the well.
So yay for CFS diagnosis, BOO and also HISS for throwing that "label" on every person in America all at once because "NEW DRUGS, MORE MONEY, WOOHOO".

I have an LJ friend who has a son recently diagnosed with Aspergers, I am going to direct her to this!
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[User Picture]From: substitute
2005-08-17 07:48 pm (UTC)
Who knows what you had! CFS was a trendy diagnosis for a while and it was a catchall for a lot of problems, especially for women. At one point they thought it was caused by the very nasty Epstein-Barr virus, which also causes mono. Epstein-Barr is just bad news in every way.

Wellbutrin is a dopamine drug and can fix depression, addictions, and ADD related disorders sometimes. I don't know about its use with CFS.

Since my post is acerbic and somewhat anti asperger's diagnosis, your friend might well get mad at me. But my skeptical self says that anyone who gets that diagnosis should get a second opinion.
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[User Picture]From: bruisedhips
2005-08-17 07:59 pm (UTC)
I just read through that entire link and WOW.
I have mentioned to her before that I think it's insane to slap a heavy diagnosis on a kid like that. It's like squashing his little morale before it even germinates.
Let him grow, keep close watch, encourage and raise your awareness accordingly, you know? It just makes me sad. There's enough people with real problems, lets teach our children to focus on helping them out!
wow, I just rambled in a fairly incoherent manner, as usual.
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[User Picture]From: substitute
2005-08-17 07:52 pm (UTC)


That's another dangerous diagnosis, again for social reasons. It's a nasty disease; people hurt badly and are exhausted. And more women than men get it. But it's also a catchall for "female trouble", and it's chronic and can't be fixed, so women get that as a dump diagnosis when they feel like shit.

And then later it turns out oops, you had rheumatoid arthritis the whole time, sorry about the five years of useless pain while we didn't give you treatment for that!
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[User Picture]From: bruisedhips
2005-08-17 08:00 pm (UTC)

Re: Fibromyalgia

My Aunt with Lupus being a great example of that. :(
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From: king_tirian
2005-08-17 09:38 pm (UTC)

Re: Fibromyalgia

Or sorry about having you put up with buying pharmecuticals and suffering side effects for five years when your symptoms would have cleared up with a generic multivitimin and eight glasses of water a day. Yeesh, I am still amazed by how much of my general daily yuckiness is evidently caused by dehydration.
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[User Picture]From: tinymammoth
2005-08-17 10:59 pm (UTC)
I am very glad they were able to help you.

If all it took to get you well was Wellbutrin you didn't have it. (Which is not to say that your medical issues were not real and serious, I just think they don't fall under this diagnosis.) Real CFIDS involves muscle pain, sleep disruption, and major cognitive problems. Underlying all this is massive immune system dysfunction; the brain symptoms are only an indirect result of this. Wellbutrin treats the brain directly. I can see it helping a few CFIDS patients, but it wouldn't be able to cure them, just mitigate their problems, because it doesn't help the immune system.

This is all in the research stage but I think that in the next ten years or so the researchers will finally concur on RNAse-L as the definitive test for CFIDS; it's a protein involved in immune function that's very low in CFIDS patients.

What does help CFIDS patients appears to be long term treatment with an arsenal of antibiotics, interestingly enough. But again, that's preliminary and controversial.

(CFIDS is what the community of patients prefer to call Chronic Fatigue Syndrome. It stands for Chronic Fatigue and Immune Dysfunction Syndrome, and is preferred on account of being more accurate. An official name change is in the works but hasn't yet made its way through channels.)
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[User Picture]From: substitute
2005-08-18 12:43 am (UTC)
One of the other rules of modern medicine seems to be: when they can't figure out what the hell is wrong with you, it always turns out to be an immune disorder.

It's good to see that after all these years they're within hailing distance of a diagnosis or a treatment. The people I knew ten years ago who were dealing with this stuff were completely at sea.
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[User Picture]From: tinymammoth
2005-08-18 02:12 am (UTC)
Well, the antibiotics are pretty grueling and experimental, but they do seem to help a majority of patients pretty significantly. Unfortunately you spend the 18 months of treatment far sicker than you started so a lot of people are afraid to do it.

I do think there's some progress but unfortunately there's almost no funding. I think more funding would make a huge difference. Recently the funding has increased a little so that will help.
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From: besskeloid
2005-08-17 09:02 pm (UTC)
The Encyclopedia Dramatica is about as funny as an amputation without anaesthetic. Sorry.
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[User Picture]From: substitute
2005-08-17 09:07 pm (UTC)
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[User Picture]From: girlvinyl
2005-08-22 07:12 am (UTC)
You are completely incorrect... or correct depending on how funny you find primitive surgeries.
Either way, ED is the greatest website on the internet and the last great hope of western civilization.
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[User Picture]From: flipzagging
2005-08-17 10:05 pm (UTC)
I'll keep an open mind about Asperger's, even self-diagnosed, but Oppositional Defiant Disorder is two kinds of funny in one. Ick.

I have just discovered Alto-Arachnid Avoidance Syndrome, i.e. the tendency to avoid sweeping away the cobwebs on the ceiling. I have proved a genetic link, particularly among people of Pygmy descent.
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[User Picture]From: burntcurtis
2005-08-17 10:23 pm (UTC)

Let's Build a Car!


I don't care what anyone says. That Encyclopedia Dramatica article is by far the funniest thing I have read all day.

My sister's boyfriend was diagnosed with the disease... After years of playinig Warcraft and being in the SCA...
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[User Picture]From: superlaundrette
2005-08-18 06:18 pm (UTC)
hear hear!
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[User Picture]From: substitute
2005-08-18 06:53 pm (UTC)
That's pretty much what I was saying, but maybe I didn't get it across. That seems to be happening a lot lately.

It's very much the point of Osler's Web for example that a real disease was completely pooh-poohed because it showed up in middle-class American ladies, and that the women who didn't have the real disease still had a genuine global social problem that was going to make them feel like shit whether their immune systems had blown up in that specific way or not. Hence "the disease that women have" that I described in my first paragraph. which is genuine as a social problem no matter what the blood tests show.

I honestly thought I was very clear about the difference between the two problems.
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From: cowboyjoey
2005-08-18 08:16 pm (UTC)
I'm surprised there hasn't been mention of correlation between overdiagnosis and drug companies peddling their wares to doctors. Thank god my mutual funds are heavy in bio-med.
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