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Jennifer Brea in Boston Globe December 27, 2017

Discussion in 'General ME/CFS news' started by MeSci, Dec 28, 2017.

  1. MeSci

    MeSci Senior Member (Voting Rights)

    Cornwall, UK

    They told me my illness was all in my head.
    Was it because I'm a woman?
    Why doctors must stop disbelieving women's symptoms and institutions must do more research on diseases that primarily affect women.

    Five years ago, at a restaurant in Cambridge, my waitress brought me the check. I stared at the signature line, pen in hand, and froze. I was 28 years old, a Harvard PhD student studying political economy and statistics, and I had forgotten how to write my own name.

    More than a year before, my temperature had spiked to 104.7. I thought I had a bad flu. After the fever subsided, I kept getting common ailments: sore throats, sinus infections, low-grade fevers. Except I would wind up in bed, inexplicably dizzy, for days on end. After the restaurant incident, I got to the point where I could leave my house only in a wheelchair. Some days, I did not have the strength to lift my head.

    Seeking answers, and care, I would eventually see a dozen specialists at Massachusetts General Hospital and Brigham and Women's. All of their tests came back normal. As my symptoms grew in complexity, my doctors started to use words like 'anxiety' or 'depression.' On instinct, I started taking my then fiance, now husband, Omar, to my appointments. (I
    thought I might be treated better if I had a male witness.) Then a neurologist gave me a diagnosis: Conversion disorder, which prior to 1980 was called 'hysteria.'

    In other words, it was all in my head.

    More at link.
    Last edited: Dec 28, 2017
  2. BurnA

    BurnA Senior Member (Voting Rights)

    Jen seems to be focusing on the sexism aspect more in this article than in others.
  3. Forbin

    Forbin Senior Member (Voting Rights)

    Women may get told that "it's all you head" more readily than men, but, without a biomarker, I suspect most men eventually hear something along those lines, as well. I certainly did. I had respected doctors suggest that I should see a psychiatrist, and I had respected doctors warn me against seeing a psychiatrist. It really was the difference between doctors who believed that they and their tests could diagnose anything and doctors who believed that there were still "unknowns" in medicine.

    It could be, though, that some doctors modulate their faith in their tests based on the patient's sex. If so, that "thumb on the scale" only worked in my favor about 1/3 of the time. Often, their disbelief was merely suggested, but, within a month or so of getting ill, a doctor actually said to me, "Maybe it's all in your head."
  4. BurnA

    BurnA Senior Member (Voting Rights)

    Invisible Woman likes this.
  5. ahimsa

    ahimsa Senior Member (Voting Rights)

    Oregon, USA
    I think it's important to separate the discussion of a systemic issue (like sexism) from the discussion of what happens to us as individuals (doctors often treat ME patients badly). These topics are related but they are different topics.

    There are many patients with ME who have been treated badly by doctors. And many of those ME patients are male. No doubt about that!

    But there are also systemic biases that play into how patients are treated and how illnesses are perceived by medical personnel or the general public.

    Focusing on one issue (e.g., systemic sexism, much of which is unconscious and unintentional, and which is also done by women doctors because they have also been subconsciously influenced in that way) does not diminish or erase the other issue (e.g., ME patients as a whole are treated badly by the medical system, ME biomedical research is underfunded compared to other illnesses, and so on).

    To use one example, have any male ME patients been told that they would feel better if they had children? This is a subject that comes up time and time again for women who have ME. And I'm not talking about the theories that revolve around pregnancy and immune system/blood volume/etc. (as far as I know these theories are all speculation but even if they were proven I'm not sure that a woman would be wise to have a child solely in the attempt to treat an illness...but that's a long ethical discussion that is completely beyond my poor brain)

    To give another example, have any male ME patients been asked whether their symptoms might have been caused by regret over a former vasectomy? Early in my illness, about one year in (1991, I think), I was asked by a doctor (a women doctor) whether my symptoms could be regret over my recent tubal ligation.

    One of my proudest accomplishments was not screaming at this doctor in anger over such a baseless question. Because that type of reaction, of course, would feed into the "hysterical woman" stereotype. I gritted my teeth and told her no. And then I never saw that doctor again. I also wondered why on earth ANY doctor (MD, not a psychologist) would psychoanalyze a patient on the very first visit, and after only about 10 minutes of discussion.

    These are just two examples. I have more of my own and I'm sure there are many more out there.

    Again, these examples do not diminish the horrible treatment than men get at the hands of doctors! And I'm 100% sure that there are male ME patients who have horror stories that are MUCH WORSE than my own when it comes to bad treatment!

    For example, I have a husband who could go with me to my early doctor appointments. If you are single, and don't have a spouse/relative/friend to go with you to support your reported symptoms, and your basic medical tests all look normal, you are more likely to be disbelieved by doctors.

    At any rate, I do think that there are differences in how men and women are treated by doctors. Women get the short end of the stick statistically. That's not the same as saying every individual woman is treated worse than every individual man.

    Sorry to ramble on (one of my weak points) but I hope this was helpful.

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