I became a sick woman 10 years ago. In October 2010, the cause of the strange pain that had haunted me for years was finally uncovered and I was diagnosed with systemic lupus erythematosus (SLE), a chronic autoimmune disease, 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 looked for answers through my medical history. Unwell women, like so many Russian nesting dolls, emerged from the annals of medicine. Their medical histories often followed similar patterns: childhood illnesses, years of pain and mysterious symptoms, and repeated misdiagnosis. These women were part of my story. But the observations of their disorders and symptoms in clinical trials told only a fraction of their stories. Notes on their cases gave clues about their bodies but said nothing about what it meant to live in them.
I tried to imagine what it felt like to be a sick woman struggling with a disease that defied medical understanding at these different points in history. I felt a close relationship; we shared the same basic 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 women’s health since ancient Greece. The authors of the Hippocratic Corpus, the fundamental treatise of Western medical practice, spoke of the “inexperience and ignorance” of women about their bodies and their diseases. 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, which means uterus, it was originally believed that hysteria originated from the reproductive organs, which have been considered the source of many female diseases since the Hippocratic era.
In the 19th century, female hysteria “took center stage” and “became the explicit topic of numerous medical texts”, especially when the cause of an illness was not immediately apparent, wrote the British medical historian Roy Porter in “Hysteria Beyond Freud”. . ”As the cultural critic Elaine Showalter has shown in her influential story“ The Female Malady ”, well-known doctors and psychiatrists of the time linked hysteria with the perceived tendency of women to produce symptoms of attention and sympathy.
