Taking women seriously about their health should not always mean trusting doctors
In the early 1970s, the novelist Hilary Mantel went to her doctor complaining of chronic pain. The result was that she was admitted to a psychiatric hospital and dosed with high-strength anti-psychotic drugs.
“The more I said I had a physical illness,” she later wrote in her memoir Giving Up the Ghost, “the more they said I had a mental illness.”
The more I questioned the nature, the reality of the mental illness, the more I was found to be in denial, deluded. I was confused; when I spoke of my confusion, my speech turned into a symptom.
Mantel finds herself trapped by her diagnosis, every act viewed through the lens of her supposed insanity, an insanity she cannot question without being seen as even more insane. When, her vision blurred by medication, she buys herself a nightdress several sizes too large, she cannot even joke about it. As far as those treating her are concerned, “it was obviously characteristic of mad girls to buy big nightdresses. Every time I spoke I dug myself into a deeper hole”.
Mantel was deeply unhappy — as one might well be in such a situation — but she was not mentally ill. She was suffering from endometriosis, only receiving treatment for this years later, having undertaken her own research and presented it to a different doctor. Her experiences left her with a lifelong mistrust of psychiatry. “By the time I was twenty-four,” she wrote, “I had learned the hard way that whatever my mental distress [ … ] I must never, ever, go near a psychiatrist or take a psychotropic drug.”
There’s much in Mantel’s story that captures women’s difficult relationship with a patriarchal medical profession, a relationship which, half a century later, we would like to think has improved. On the one hand, there’s the ignorance surrounding disorders that are specific to the female body, leading to the underdiagnosis of conditions such as endo and the expectation that “women’s troubles” ought to be endured without complaint; on the other, there’s the eagerness to misdiagnose women as “hysterical, neurotic, difficult, and out of control” whenever they refuse to suffer in silence. There’s the fact that non-specialists such as Mantel have had to self-diagnose in order to get the care they need; and there’s the fact that rejecting an incorrect “expert” diagnosis has, for many women, been more trouble than it is worth.
For the doctors Mantel first encounters, “the object was to get [women] back under control, not by helping them examine their lives, or fix their practical problems … but by giving them drugs which would make them indifferent to their mental pain — and in my case, indifferent to physical pain too”. It is perhaps not surprising that the second-wave feminist movement of that era featured several searing critiques of psychiatry, such as Elaine Showalter’s The Female Malady and Phyllis Chesler’s Women and Madness. The problem, as Mantel’s example shows so well, is not that women who are suffering should not never be diagnosed with anything — it’s that underdiagnosis and misdiagnosis can work together not just to prevent the alleviation of pain, but to create more of it.
I thought of Mantel when reading Suzanne O’Sullivan’s careful, nuanced work The Age of Diagnosis. In it, O’Sullivan distinguishes between misdiagnosis (simply the wrong diagnosis, such as Mantel’s “madness”), overdiagnosis (the detection of a medical problem before it is helpful or necessary) and overmedicalisation (the medical labelling of ordinary human experiences and life stages). The nuance is useful, not just because of the way in which “overdiagnosis” has started to be seen by some as a right-wing red flag, an opportunity to justify cuts by casting people with certain diagnoses as malingerers. It’s useful because it captures a tension in the way in which we respond, socially and politically, to mistakes that have been made with diagnosis in the past. In the case of women in particular, I’ve increasingly started to feel that contemporary feminism has been dealing with one half of the problem at the expense of the other.
Namely, it seems to me that in responding to one half of the “women and diagnosis” problem — the underdiagnosis of physical disorders that are manifested only or with differing symptoms in female bodies — there has been a neglect of the other half: the misdiagnosis, overdiagnosis and overmedicalisation of psychiatric conditions in women. It’s a trend I’ve come to think of as diagnosis-positive feminism. If it sounds a little like sex-positive feminism, that is entirely deliberate. Both arise in response to a genuine problem (in one case, the under-diagnosis of health problems in women; in another, the belief that women must be sexually passive and “pure”). Both, however, over-correct, adopting an insufficiently critical attitude towards either the sex trade or a diagnosis-happy medical profession. Both dismiss any criticism as either denying the original problem or “promoting stigma”. Ultimately, both jettison earlier feminist analyses of the problem, not because these analyses are necessarily wrong, but as a kind of coping mechanism, given how little has changed, or even how much the situation has worsened. If you are going to be objectified or labelled anyways, your life will be made easier if you go along with or even embrace it.
This makes it very difficult to talk about ways in which diagnosis — even a diagnosis that is nominally correct — can be a mixed blessing. For instance, in the realm of eating disorders it has become almost impossible to question the insistence that the earlier one is diagnosed, and the more inclusive the diagnostic criteria, the better the outcome. Only I would question it. A diagnosis means an instant reframing of whatever it is you are doing and feeling, and a loss of credibility whenever you seek to question other people’s interpretations (try persuading someone you bought an over-sized nightdress by accident once you’ve been labelled anorexic). The aim of labelling sufferers earlier, and supposedly more “scientifically”, can often seem to be not one of promoting greater understanding, but a form of exoneration (these women are not being bad but mad!). But what if there is real anger or resentment underpinning the choices a sufferer makes?
Feminism needs to take on the challenge of distinguishing between what helps and what harms
When I was diagnosed with anorexia in the late eighties, I was wrongly prescribed the same anti-psychotic — Chlorpromazine — Mantel was almost two decades earlier. There was, I would say, the same interest in giving women (or girls, in my case) “drugs that would make them indifferent to their mental pain”, and I am conscious that today’s diagnosis-positive feminists would claim things are different now, and kinder. Nonetheless, I can’t help feeling there has been a move from the misdiagnosis of “badness” to the overdiagnosis and overmedicalisation of difficult relationships with food and the body, diagnoses which take us further from any understanding of the social and political context of eating disorders. At its most extreme end, the over-validation of anorexia as a distinct, mysterious disorder — as opposed to the interaction of a sufferer with not just her body, but the world around her — has contributed to the introduction of the “terminal anorexia” diagnosis. Is this really an improvement on previous understandings?
If a young woman presented with Mantel’s symptoms today, it would be good to think she would get the correct diagnosis — or, at the very least, not a harmful, incorrect one that increases her suffering. I think the fear that any criticism of diagnoses is an attack on all diagnoses — including those that women have historically been denied, and which benefit them — is a real and valid one. Nonetheless, feminism needs to take on the challenge of distinguishing between what helps and what harms. Our bodies and pain need recognition, but we are not always the ones in need of a cure.
