CFIDS as a "Female" DiseaseOne of the major problems with getting attention from the medical establishment for our disease is that it is a "female" disease. Not just in the sense that more women get it than men (although it's probably a 60-40 split, so it's pretty close); rather, it is a disease that fits the attributes associated with "femaleness" in a gender-dichotomized intellectual framework. Which dooms our disease to disrespect, lack of interest, and even mocking.
A lot of the conventions and institutions we associate with both formal medicine and science were founded and structured at the end of the 1800s and beginning of the 1900s, like the American Medical Association, teaching hospitals, indeed, hospitals as we know them, the concept of asepsis, the strict concept of the "scientific method" as replicable tests of objective hypotheses.
These institutions contain inside them the left-overs from the era in which they were created.
Well, it was believed and very clearly articulated then by intellectuals, that women and men were so different as to be almost two different species (Samual Gompers, the labor leader, once referred to women as belonging to a different "race" than men, which I find hilarious). That is, they really believed that a woman who studied science would end up with medical problems because her uterus would shrivel up! I'm not kidding!
So much of the thinking of that period has to do with what is male and what is female. Male is working outside for money, being competitive, dog-eat-dog, aggressive, logical, hard-edged, objective. Female is working inside the home for love, not money, being comforting and cooperative, nurturing, passive or at least willing to give in, emotional (instead of logical), soft, subjective.
Now very few of us believe this stuff today! I sure don't. Whatever we believe the differences are between male and female, I doubt that many of us still think a woman's uterus would shrivel up if she read scientific material!
But the stereotypes, the assumptions, and the preconceptions remain embedded in the institutions until we realize that and do something about it.
Old convictions about what is male and what is female live on in the way that the medical establishment thinks about disease and individuals, in the way the medical establishment treats disease and individuals, and in the way the medical establishment goes about structuring research.
And when I say CFS is a "female" disease, I don't mean it is a disease of women. (This is where it gets complex). I mean it is a disease that is perceived itself to have the stereotypical attributes that our culture used to associate with women, earlier in this century (even to the 1950s in some cases) and going back into the 1800s.
That is, CFS itself is seen as: emotional (stress, depression); subjective (no tests to "prove" it; you have to listen to the patient's self-description); "soft" (well, you don't die from it, they say); cooperative (doctors must reach outside their own areas of expertise; patients need help from the community to survive; no single doctor is going to "fix" this by himself); in need of comforting--
See? The point is not so much that it really is "female" (it isn't)--but that it is perceived as "female things" are perceived, or have been perceived, in our culture. That is, Not important, not serious, not worthy of respect by busy doctors who have important and serious matters to deal with every day.
And that makes it much harder to break through, because doctors--well-trained inside the medical institutions that themselves replicated the cultural norms they were designed to replicate--doctors themselves, inside, believe that this type of thing--this type of "female" thing--is simply not important. Period.
They don't listen to us because they can't. They block it out. You might as well be telling them about a premonition you had in a dream last night. They're not going to listen.
Of course, the pathbreakers, the really good doctors, the creative thinkers, they can break through these rigid stereotypes--as the saying goes, they can think out of the box.
If this doesn't make sense to you, don't worry about it! But it helps me, at least, explain the irrational resistance of the medical profession, as individuals rather than as a whole, to dealing with the severity of this disease. You don't get that kind of self-deception unless you're slamming into some belief that is very deeply held inside a person's identity. And I think that the training doctors get--the emphasis on high test scores and a science background in college (until recently at least), the way medical school itself is structured, the trials they make interns and residents go through--it is all structured to acculturate doctors into the medical profession the way it has always been--dating back a century. Which means that it is structured to emphasize "male" ways of behaving and thinking, and to cast aside as unimportant "female" ways of behaving and thinking.
Now, we women are used to having some men, at least, in our lives, treat us with this kind of disrespect. But it's gotta be a new experience for some of you men. The disrespect comes from the PWC having to present himself/herself to the doctor with symptoms that doctors do not want to have to think about, because they were trained not to have to think about them. So, you men join us women in being invisible to a lot of the medical profession. It feels irrational bcause it is irrational. It's not something the doctors themselves are aware they are doing, and they would most likely get very angry if you suggested it to them.
When the CDC went to Incline Village, took blood samples, and went back to Atlanta without even talking to the patients, without watching their behavior, listening to their symptoms--that was a masculinist approach to scientific research, and the "female" aspects of our disease went unnoticed, invisible.
When medical professionals (and our representatives in the CDC) can say with a straight face that this disease may be "stress" or "anxiety" or "modern life", or "functional somaticization" (that means that it hurts because you are repressing what you really want to do ...)--that is feminizing the illness.
And as long as this is perceived as a feminine illness, in the sense of gender typologies, then it will be a long, hard battle to get the respect, the diagnosis, the treatment, the care, the compassion that sufferers of this illness desperately need. Whether male or female.
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