13 May, 2005

Of doctors and patients (CFS, part two)

In the 1997 movie "As Good As It Gets", Helen Hunt's character complains to her son's doctor about the fucking HMO bastards restricting her son's care. The scene hit a nerve, drawing spontaneous ovations around the country.

For me, the movie didn't ring so true. Many people with Chronic Fatigue Syndrome (CFS) have had their own run-ins with HMO bastards, but the doctor-patient relationship portrayed in this movie: thoughtful, caring, doctors, kindly imparting knowledge and useful recommendations on grateful patients, is just a Hollywood fantasy for most PWCs (People with CFS).

I have been through doctor's appointments that were more cross-examinations than examinations. I have had doctors get angry with me for suggesting treatments I'd read about and I've had doctors get angry with me for refusing treatments I knew would be harmful because they had "a hunch" it might help. I've had a doctor lecture me about the importance of doing schoolwork while I was too sick to watch television and a doctor get visibly angry when my test results showed that she still didn't know what was wrong with me. Like virtually every PWC, I have had multiple doctors tell me that I "NEED A PSYCH EVAL!!!", as one wrote in my file. (FWIW, I've had numerous psych evals.) And compared to many people with CFS, I've gotten off easy. I can only imagine how the patients of people who read Psychology Today articles like Is It All in My Head? are treated.

Now, I have seen a handful of doctors who were very good and there are some brave doctors who have put their careers on the line to research treatments. Literally. One researcher at the American Association for Chronic Fatigue Syndrome conference I attended informed me that if your name appeared anywhere near the words "CFS" you would never get funded on anything, CFS-related or otherwise. That was 1999, perhaps times have changed. Interestingly, non-scientific surveys of doctors and researchers at the conference showed that most either have or had CFS themselves, had family members or spouses with CFS, or were the doctor present at a large outbreak.

If the personal is political and all that, then right now PWCs are still in the bewildered analysis stage. As in, what could we have possibly done to qualify us for such animus? There are theories, this from a woman on a mailing list I'm on:
[T]his is because there are 9 times more women than men with [Fibromyalgia, a related disease] and [CFS] sufferers are also overwhelmingly women. And this is just how women get treated, most of the time.

Get used to it, guys. Sorry, but you have a "woman's condition." So get prepared to be blamed, belittled and not believed.
And I think that's part of it. But Gulf War vets who came down with a very CFS-like illness get virtually the same treatment, as did Multiple Schlerosis patients around the turn of the 20th century. So, my question to you and the entire blogosphere is this: why do doctors suck so much? What can be done about it?

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