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.