I became an unwell woman 10 years ago. In October 2010, the cause of the strange pains that had hounded me for years was finally uncovered, and I received a diagnosis of Systemic Lupus Erythematosus (SLE), a chronic autoimmune disease that is the most common form of lupus. Ninety percent of the estimated 3.5 million people who have it are women. Like many other autoimmune and chronic diseases that disproportionately affect women—including multiple sclerosis, Graves’ disease, myasthenia gravis, rheumatoid arthritis and endometriosis—SLE is incurable, and its cause is not fully understood.
In the years since my diagnosis, as I learned to live with my mysterious, unpredictable disease, I mined medical history for answers. Unwell women emerged from the annals of medicine, like so many Russian nesting dolls. Their clinical histories often followed similar patterns: childhood illnesses, years of pain and mysterious symptoms, and repeated misdiagnoses. These women were part of my history. But the observations of their disorders and symptoms in clinical studies told only a fragment of their stories. Notes about their cases gave clues about their bodies but said nothing about what it meant to live inside them.
I tried to imagine what it felt like to be an unwell woman struggling with a disease that resisted medical understanding at these different points in history. I felt an intimate kinship; we shared the same essential biology. What has changed over time is not the female body but medicine’s understanding of it.
Specters of doubt and discrimination have haunted medical treatises on female health since ancient Greece. The authors of the Hippocratic Corpus, the foundational treatises of Western medical practice, spoke of women’s “inexperience and ignorance” in matters of their bodies and illnesses. In the 17th century, hysteria emerged as an explanation for a variety of symptoms and illnesses in women. Derived from the ancient Greek word hystera, meaning womb, hysteria was initially thought to originate in the reproductive organs, which had been named the source of many female maladies since the Hippocratic era.
During the 19th century, female hysteria “moved center-stage” and “became the explicit theme of scores of medical texts,” especially when the cause of an illness was not immediately identifiable, wrote the British medical historian
in “Hysteria Beyond
” As the cultural critic
showed in her influential history “The Female Malady,” notable physicians and psychiatrists of the day linked hysteria to women’s perceived tendency to fabricate symptoms for attention and sympathy.
Prejudices about women’s bodies, minds and lives have cast a long shadow over modern clinical and biomedical knowledge. Graves’ disease, an autoimmune thyroid disorder affecting 70-80% more women than men, had “female nervousness” written into its earliest descriptions in 1835, and it was labeled psychosomatic even after its autoimmune causality was discovered in 1956. Many women with myasthenia gravis, an autoimmune neuromuscular disease first named in 1877, were misdiagnosed as mentally unwell and dismissed as hypochondriacal well into the 20th century. Multiple sclerosis has been known to be more common in women since the 1940s, but this prevalence was long obscured by assumptions that women’s neurological and motor disorders were nervous or hysteric.
In 1955, chronic disease specialists at Johns Hopkins revealed that, over the preceding decade, several women there who were eventually diagnosed with lupus had endured unnecessary psychiatric and surgical interventions—including electroshock therapy, insulin coma and hysterectomy—after doctors misdiagnosed their chronic physical pain as a symptom of emotional instability. Ulcerative colitis, a chronic bowel disease that affects female sufferers’ reproductive and sexual functions in poorly understood ways, was historically considered to be caused by psychological distress. The recommended treatment for women sufferers, in the 1950s, was prefrontal lobotomy.
Broad acknowledgment of the ‘gender pain gap’ emerged just a generation ago, as a result of a pathbreaking 2001 study.
Until nearly the end of the 20th century, clinical trials and biomedical research relied disproportionately on male subjects and male experimental animal models. U.S. legislation in 1993 mandated appropriate inclusion of women and minority members in projects funded by the National Institutes of Health. This spurred, for instance, the first large-scale research into the preventive effects of aspirin on cardiovascular disease in women; previous trials had enrolled only men.
Broad acknowledgment of the “gender pain gap” emerged just a generation ago, as a result of the pathbreaking 2001 study, “The Girl Who Cried Pain: A Bias Against Women in the Treatment of Pain.” Drawing on clinical data and sociological research gathered since the 1970s, authors
academics in medical ethics and healthcare law at the University of Maryland, revealed that women were more likely to be prescribed sedatives and antidepressants than to be referred for further diagnostic tests after self-reporting chronic pain. They attributed this disparity to views of female pain as “more emotionally based, and thus less credible.”
More recently, a Swedish team analyzed research on gender and pain published in the U.S., U.K. and Europe since 2001 and concluded that women’s pain was still more frequently “psychologized” and “taken less seriously” compared with male pain.
Reports in 2019 and 2020 by two related Toronto-based teams analyzed studies of treatment for heart disease and depression and found that women were given fewer referrals and procedures than men. Women were also more likely to describe poor communication with their doctors. The reports suggested that developing specific “patient-centered” regimens in treating women, including training clinicians in “active listening” and “eliciting questions,” could change the dynamic but found little practical research on instituting such practices.
One bright spot is the rising ranks of women doctors. Women self-report better outcomes in diagnosis and treatment when cared for by female physicians, and according to a 2018 report by the National Academy of Sciences, women patients are more likely to survive a heart attack when their doctors are female. Although men still outnumber women among active U.S. physicians, women made up 36.6% of the field in 2019, a rise of 8 percentage points from 2007.
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In the past year, the Covid-19 pandemic has shown the importance of integrating gender differences into medical research. Studies indicate that women, especially those over 55, are more likely to be affected by prolonged post-viral symptoms, including breathlessness, fatigue and brain-fog. Women also appear to suffer more side effects after being vaccinated, including some that are life-threatening, but the extent and severity of possible risks are not yet understood.
Today, the exact reasons for the gender disparity in the incidence of my disease, SLE, are still largely mysterious, though researchers recognized its prevalence in women more than a century ago. Further investigation is urgently needed to comprehend how and why perplexing chronic and immune-mediated illnesses and conditions affect women in far greater numbers, but women must also be more valued as accurate reporters of their own experiences of pain and illness. Many of the answers reside in women’s bodies and in the histories their bodies have been writing for centuries.
—This essay is adapted from Ms. Cleghorn’s new book “Unwell Women: Misdiagnosis and Myth in a Man-Made World” (Dutton).
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