A woman who has been ill with CFS for years but without a diagnosis, even after she is diagnosed, is very vulnerable and this attracts doctors who need to control and blame the patient, who need this type of power for their egos.
Greenhalgh, S (2001). Under the medical gaze: facts and fictions of chronic pain. Berkeley: University of California Press.
In this book, Dr. Greenhalgh, writing as a patient, discusses at length her treatment by a doctor whose treatments made her worse, eventually endangering her career. Publishers Weekly says "The author speculates at length about the role her female identity played in her willingness to accept the forceful and ultimately wrong advice of a male physician".
Library Journal observes that the book "convincingly exposes the limitations of the medical profession's "scientific" approach to illness. ... while physicians do not intend to deceive patients or cause harm, their use of the language and trappings of science can cause them and their patients to be blind to the possibility of personal biases and medical errors. She also draws on feminist psychology, theorizing that male physicians often dismiss the concerns of their female patients and that female patients do not advocate for themselves as they should, reverting instead to the societal expectation of trying to please a man by being "a good patient.""The good news is Dr. Greenhalgh is now doing well under the care of a female physician.
That male physicians dismiss female patients is more than just theory; it’s been proven. One of the early CFS experts got the virologist who had identified AIDS to look at some of her CFS patients, in hopes of confirming her diagnosis that this was a virus. She sent a series of extremely ill women, all of whom returned with an erroneous psych diagnosis. Then she sent a man, whose symptoms were nowhere near as bad as those of the women she’d sent previously, and he was returned to her with the diagnosis of "a virus we don’t have a test for yet". It was obvious that the virologist had the prejudice that all female patients are mentally unstable but men are really sick.
He’s not alone: there is plenty of anecdotal evidence of female patients being called lazy, hysterical, whiner, hypochondriac ... and then a male patient with the same symptoms comes in and is taken seriously.
Almost every CFS patient can tell you horror stories about doctors who figure out ways to blame the patient either for the initial illness or for not recovering quickly enough (I was told that I "didn’t want to get well because then you’ll have to go back to work" when, in fact, the problem was that I was being given medication that researchers had proven totally useless against CFS – I started to recover when I finally got the right medication).
When I said that I did not have a prior PCP because I had not been sick enough to need a doctor in almost 10 years, I was accused of "not wanting me to get the records and find out you’re a hypochondriac". Unfortunately, as every debater knows, you can’t prove a negative; there was no way for me to prove that the only doctors I’d seen in years were the gynecologist and Urgent Care; he wanted to believe that I was a hypochondriac who developed these symptoms only after reading a magazine article and nothing would change his mind unless I produced non-existent records from my non-existent prior PCP. (In fact, it was my husband who read the article, recognized what he had been seeing for months, and dragged me to the ER in hopes that the article about Chronic Epstein Barr would result in a quick diagnosis and effective treatment; I hadn’t read the article myself because I was too sick to read.) Don’t confuse him with facts, his mind was already made up that all women are hypochondriacs and all women will fake illness to manipulate their husbands to allow them to quit work. His most telling quote "I’m not signing disability papers so you can get paid to sit home and watch soap operas", never mind that I hate soap operas, or that I was the primary breadwinner and knew that disability wasn’t enough to pay the bills. I wanted to get well and go back to supporting my family, but his prejudices about women blinded him to that.
The medical establishment has come up with many ways to blame the patient for CFS. Hillary Johnson observed "Many doctors have tried to find a causal link between CFS and personality traits that, in the case of any other illness, would be considered exemplary: blaming patients for having had a strong work ethic (calling them "overachievers") or exercising regularly (being "too driven")." One of the early theories about CFS – still not entirely abandoned – is that women bring it on themselves by trying to "have it all"; that it’s not really a virus, it’s just a woman who’s burned out from juggling a executive-level job, husband, children, housework, and that the problem will go away if she drops the stressful job. That young children who are only juggling play time, bath time and nap time also get CFS is swept under the carpet by that theory; "inconvenient truth" often is.
I am not the only female patient who has had male doctors say things to her face like "all women want to be housewives" or "you want me to help you get lifetime alimony so you don’t have to work". In one sense, this is understandable, since many women who don’t want to work target highly-paid men, like doctors, to become their husbands, so it may be the doctor’s personal experience that all the women who’ve chased him wanted to be a housewife and demanded massive alimony in the divorce, from which they extrapolate that this is the goal of every woman. But they would only have to look around and see their female colleagues who aren’t housewives, to see that there are some women who are more interested in a career than in scrubbing floors. But that would require examining their pre-conceptions, and it’s much easier to stubbornly cling to ingrained ideas.
My college had a large percentage of pre-med students, so I’ve observed the breed first-hand, at great length. Some of them wanted to be doctors only because of the money (such as one who shrugged "if I don’t get into med school, I’ll go to law school instead, the money is just as good"). Some wanted to be doctors for the power trip of being able to tell people what to do (I saw that one close-up in a boyfriend). Others, predominantly women, didn’t care about the money, they wanted to help people. The problem is, the ones who are only in it for the money don’t have a giant $ tattooed on their heads, and the control freaks don’t have a threatening fist tattooed on them, either.
It’s not always instantly obvious that you’re dealing with a doctor who needs to control women and boost his ego. I had one who seemed quite sincere in saying "I want to help you"; it was only after I "refused to get better" that his true naturestartedto come out: belittling me, verbally abusing me, blaming me for the illness, accusing me of anything he could think of to take the blame off himself for his failure to cure me. When I returned with the bad news that the most recent pill had not helped at all, he reacted as if this were a personal affront to him, like I intentionally didn’t get well in order to make him look bad. But even after that he still wouldn’t prescribe what I told him the experts recommended, nor refer me to a specialist. It became clear that his ego was at stake, and taking advice from someone else was not what he wanted to do.
A friend who, unbeknownst to me, was seeing the same doctor for a different condition, later reported the same treatment. Comparing notes, he accused her, too, in almost the same words, of wanting alimony, gave her the same verbal abuse for "refusing to get better because she didn’t want to work", and refused to listen to other medical professionals who advised that if she continued to work her condition would get worse and she would eventually lose the use of her hands. It never crossed his mind that she’s the owner of a successful million-dollar business, all he saw was a divorcee who wanted his help in fleecing her husband for lifetime alimony so she wouldn’t have to work. His ego got in the way of helping her, too.
Again, prejudice that women don’t want to work got in the way of his understanding that she and I were self-supporting professionals who didn’t want permanent disability, we desperately wanted and needed to get well and go back to work, but needed temporary disability to tide us over while we recuperated from being too sick to work.
Fortunately for her, the company changed medical insurance and she went to a new doctor, who immediately put her on temporary disability until she recovered. Unfortunately for me, by the time I finally found a doctor willing to give me the right pills, it was too late and I’ll never fully recover.
As far as the notion that women need to advocate for themselves more strongly, one of the original Incline Village patients, a man, has told me that some of the doctors who at first dismissed the disease later changed their minds (usually as a result of seeing someone they knew personally come down with it, someone they knew wasn’t given to faking, hysteria or hypochondria, as they’d accused previous patients). He, too, was told that the reason the doctors didn’t believe him (and other patients) was that they "didn’t advocate strongly enough". The question arises, how much more strongly could he have advocated? He did everything but slap the doctor upside the head.
Similarly, I know what symptoms differentiate CFS from depression and make sure to mention those whenever I see a new doctor; those symptoms don’t appear in my medical records, so apparently I need to take a deep breath and bellow those to make sure they are loud enough to get past the doctor’s selective deafness.
I was accompanied to my first appointment by my husband, who did most of the talking because I was too sick. His first-hand observations were disregarded, and the doctor eventually talked him around to believing that he didn’t see what he thought he saw, because there was nothing there to see. At a later appointment, I reported that "My boss says to tell you..." and my boss’s observations were also disregarded. The doctor wanted to see "nothing wrong" and didn’t want to believe that anyone else saw objective symptoms like fever/vomiting/diarrhea/fainting/weakness.
He eventually refused to see me again until I had a psych evaluation, but when I returned with the information that a professor of counseling had said my symptoms were those of physical illness, not depression (I lacked the emotional components required for that diagnosis), the doctor refused to accept that evaluation; it wasn’t what he wanted to hear. Thirteen years later, I ran into another doctor who was so sure that I was depressed that even two psych evaluations saying that I lacked the emotional components required for depression were not enough to convince him to shelve his ego and take the advice of experts. Both of them had to control the patient to the point of inflicting an erroneous, stigmatizing diagnosis; I was punished for daring to say "you’re wrong" and finding experts who backed me up that my problem was physical, not psychological.
One even punished me for my chutzpah by referring me to a doctor who treated nothing but AIDS. That doctor’s office called it "a sick joke", pointing out that Dr. Truax’s name in my medical records could mean nothing else, and the mere mention of his name in my records would stigmatize me for life because every future doctor would assume either that I had AIDS or that I was an irresponsible person who had engaged in enough drugs/unsafe sex to have concerns about AIDS. (Apparently, Dr. Truax had some meaningful dialoguewith thequack about ethics, because the copy of the records I got later didn’t have Truax’s name in them.)
I pay my bills by proofreading court transcripts, and have read several cases where the experts have testified that it’s abusive for the defendant to tell his victim to ignore her own feelings and observations and believe only what he tells her. Why is it not equally criminal for a doctor to abuse patients by telling them to ignore her own feelings and observations and believe him that she’s not really sick, doesn’t really have the objective symptoms she and her family/co-workers see? "You'll feel better if you just stop thinking you're sick and go back to work" isn't helpful.
For that matter, why are doctors so adamant that no one be allowed to practice medicine without a license when so many of them are practicing psychiatry without a license? Only a licensed psych professional should be allowed to put diagnoses like depression and anxiety into a medical chart, to prevent these amateur psychologists from concluding that fatigue automatically means depression, and unwillingness to do what’s been proven to make your symptoms worse means anxiety, even without the emotional components required for those diagnoses.
But, as Dr. Bell observes, writing "depression" in the chart relieves the doctor of the obligation to do any further investigation. It may not help the patient to have an erroneous diagnosis, but it helps the doctor to wash his hands of a troublesome patient.
Dr. Bruno comments "In this new millennium, medicine must not be about doctor’s egos and their ability to "cure" disease." He urges doctors to change their thinking to simply helping chronically-ill patients to have the best possible quality of life. It should not be a blow to the doctor’s ego when he cannot effect a full cure of a disease for which there is no FDA-approved cure, but as one doctor asked me "what would it have hurt?" for my doctors to give me sleeping pills and/or pain pills so that I would have some quality of life instead of spending 12-15 hours tossing and turning in hopes of getting 2-3 hours sleep. Instead, they changed my diagnosis to something they could fix, and then became annoyed with me when I refused to be cured of what I didn’t have in the first place.
Now, that’s the ultimate in controlling behavior – trying to change the nature of a patient’s disease simply by changing the name.
The problem is, all the bullying, egoism and control-freak attitudes don’t do a thing to make the patients better and, in fact, often violate the medical credo of "first, do no harm" as the patient gets worse without proper treatment
.It is not the patients who are disturbed, it is the physicians who are psychologically disturbed because they ignore the data, and whatever data there is, they manipulate it to say what they want it to say. __ Muhammed B. Yunus, M.D.
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