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While preparing for major surgery a few years ago, my surgeon, learning that I was a graduate student in English, responded, “Women love their novels!” (Which seemed like a great time to tell him that my sub-specialty was actually medical ethics.) After surgery, pretty much every doctor or nurse I talked to focused on how cleanly the scar would heal, as though I was more interested in the aesthetics of healing than in significant complications of surgery that were not yet managed. (I’m fine now, thanks for asking, and the scar does, to be fair, look great.)
These complaints are minor in the face of the devastating stories and research compiled in journalist Maya Dusenbery’s first book, Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick. Dusenbery, the editorial director of feministing.com, has written about women’s relationship to medicine for years, publishing essays on abortion, maternity leave, Alzheimer’s Disease, myalgic encephalomyelitis/chronic fatigue syndrome, and more in venues like Pacific Standard, Cosmopolitan, and Feministing.
In Doing Harm, Dusenbery’s extensive research provides evidence of the problem of medical sexism, and partners this analysis with interviews with women who have it firsthand. She convincingly demonstrates that medical care can go seriously awry as a result of sexism not just at the individual level but also at the structural one, as medical agencies and funders have failed to support adequate research in women’s health.
Dusenbery outlines two clear problems facing gender equity in medical care: what she calls the “knowledge gap” and the “trust gap.” The knowledge gap exists because medical research has prioritized research into male physiology and pathology. For years, the studies on which medical and pharmaceutical science were based were made up largely, if not entirely, on men. Dusenbery demonstrates the often absurd lengths of this oversight, as studies looking into the impact of estrogen levels on heart health–an insight gained from women’s increased risk for heart disease after menopause–enrolled no women at all. Or another, which hoped to investigate the link between obesity and breast cancer and uterine cancer, but was conspicuously free of a single female participant. For decades, women were excluded from research because their bodies were viewed as too complicated, leaving many of the gains of research untested or outright wrong for women.
The trust gap arises from bias, whether conscious or unconscious, against taking women’s reported symptoms seriously.
The trust gap arises from bias, whether conscious or unconscious, against taking women’s reported symptoms seriously. The women interviewed by Dusenbery stress their difficulty being taken seriously by their medical team. When women in immense pain cried or winced, they were viewed as dramatic, hysterical, or drug seeking. On the other hand, though, women who remained stoic about pain to be taken seriously were dismissed as totally fine–if they were truly in so much pain, they would be crying, dramatic, hysterical.
Combined, the knowledge and trust gaps can be deadly for women, as Dusenbery shows. Women in the midst of having heart attacks, for instance, are routinely dismissed as having anxiety attacks, both because much research into heart disease focused on male physiology and symptoms and because women’s complaints are disproportionately attributed to anxiety. Ovarian cancer patients’ claims that they did, in fact, have abdominal symptoms prior to diagnosis were overruled researchers and physicians who claimed that it was a “silent killer” with no symptoms–and once patterns in symptoms did eventually become clear, there was resistance to educating women about the symptoms lest they cause women to worry unnecessarily.
One particularly devastating study showed that, given hypothetical male and female patients with the same risk of heart disease experiencing clear heart attack symptoms, physicians were equally able to identify heart attack for both patients. However, when the text included a reference to a recent stressful event, 56% of physicians still gave the men a heart disease diagnosis, while only 15% gave it to the woman. Almost half recommended heart medication for the man; thirteen percent suggested it for the woman. In general, when a woman describes a symptom, that symptom is viewed through whatever stereotyped lens is most readily available. Dusenbery shows how serious and even fatal medical conditions are ignored because serious symptoms are attributed to anxiety, fatness, trans identity, or drug-seeking behavior, especially for women of color.
This impressive debut would have been even more compelling had it engaged more fully with psychiatric medicine. A common refrain throughout the book is that a woman experiencing symptoms that her physician doesn’t believe or understand is dismissed as “crazy.” Of course, this is a common, frustrating, experience that leaves many women misdiagnosed and poorly cared for (or even dead). For instance, she cites a study that showed that men and women who were eventually diagnosed with MS were both misdiagnosed at similar rates, but women would get referred to psychiatry care while men were sent to orthopedists.
I found myself wishing, though, that Dusenbery would address the stigma against mental symptoms and illnesses that makes psychological explanations so utterly invalidating. For many of those Dusenbery interviewed, these explanations were frustrating because they were wrong–but the rhetoric sometime seemed to pose legitimate organic disorders with illegimate psychiatric or otherwise invisible ones. Similarly, she uses “psychogenic” as a rough synonym for psychological, hysterical, or made-up–a misperception in both public and medical circles that has not been corrected at least in part because of the same sexist dynamics Dusenbery articulates. Spending a chapter with psychiatric or psychogenic disorders, both so highly stigmatized and so gendered, then, would have given her even more fuel for this important fire.
I strongly recommend this book to anyone who works or hopes to work in healthcare and related fields, and also recommend to patients both perpetual and occasional. I’ve already had conversations with other women about how this book has encouraged us to advocate for ourselves in medical settings. I hope, though, that the book will be read by anyone who is a woman with a body or knows a woman with a body (so everyone). Intellectually, Dusenbery makes a strong case for needed reforms in medical school curricula, medical research, and patient care. Emotionally, she captures the anger and determination needed to inspire advocacy for those reforms. Here’s to hoping many in healthcare answer that call.