Elinor Cleghorn is outraged. In this comprehensive account of how Western medicine has failed for centuries to take women’s illnesses seriously, the author’s anger is detectable on almost every page.
“Our diseases are not elusive to us,” she writes of women. “But something about our diseases seems to thwart and frustrate medicine at every turn.”
As a doctor and medical journalist, I was already familiar with many of the ways medicine has neglected women’s illnesses or failed to investigate their causes, but “Unwell Women: Misdiagnosis and Myth in a Man-Made World” makes connections between the role of physicians and society’s interest in controlling women’s bodies that I had never fully appreciated. In every era, from the teachings of the ancient Greek physician Hippocrates to the past century’s debates over women’s access to family-planning methods and abortion, Cleghorn traces common societal and economic assumptions: that women are inferior to men; that their chief purpose is to be married and bear children; that too much education is bad for them; that women, by nature, are vulnerable to “mysterious” illnesses, physical and mental; and that female sexuality is dangerous if not kept in check — dangerous enough, during some periods, to justify the removal of women’s sex organs, the prescription of addictive tranquilizers, even brain surgery.
Without frequent sex and childbearing, Hippocrates suggested in his medical writings during the 4th and 5th centuries B.C., a woman’s womb could “wander” upward toward her liver and even block her breathing, choking her to death. Later, his wandering-womb theory gave rise to the word “hysteria” (from “hystera,” Greek for “uterus”), a term that came to denote a mental condition (usually in women) that featured emotional excitability, anxiety and physical symptoms that doctors often regarded as feigned. Until the end of the 19th century, Cleghorn writes, hysteria was “a diagnosis for any and all ‘female’ pathologies that physicians failed to understand.”
For centuries, doctors continued to ascribe strange powers to women’s reproductive systems. In 1651, William Harvey, a physician famous for explaining the circulation of the blood, declared that “ ‘unnatural states of the uterus’ [that is, not having marital sex] could cause mental symptoms of the most ‘grievous’ kind.” Two hundred years later, another British doctor, Edward Tilt, suggested that young women could irritate their ovaries by horseback riding or traveling by train while menstruating — especially if they were nervous or had long eyelashes. Menstruation in 19th-century England was referred to as being “unwell,” and women were thought to be unfit for work, exercise, social activities or intellectual effort during the week or so each month that a period lasted.
But not menstruating was viewed as dangerous, too. In 1872, an American surgeon, Robert Battey, removed the ovaries of 23-year-old Julia Omberg to treat disabling exhaustion that he blamed on her lack of menstrual periods. Omberg’s survival prompted Battey and other surgeons to remove the ovaries of other women (thereby sterilizing them) during the 1880s and 1890s “in public hospitals in Britain and asylums across America.”
Sometimes, this or other surgeries were performed on women as a treatment for masturbation or other behavior viewed as overly sexual. In many U.S. states, sterilization without consent of women who suffered from conditions such as epilepsy or mental illness was legal in the early 20th century, during the growth of the eugenics movement, especially after a 1927 Supreme Court decision upheld the legality of the forced sterilization of 17-year-old Carrie Buck in Lynchburg, Va. In the 1940s and 1950s, a brain operation called prefrontal lobotomy caught on as the new, popular treatment for managing depression and other mental illnesses. Women made up 75 percent of the patients receiving such “psychosurgery” from Walter Freeman and James Watts, two prominent U.S. practitioners. “In an era when a mentally healthy woman was a serene wife and mother, almost any behavior or emotion that disrupted domestic harmony could be interpreted as a justification for a lobotomy,” Cleghorn writes.
A former scholar in humanities and cultural studies at the University of Oxford, Cleghorn focused her research on Western Europe, particularly Britain, and the United States. She takes note of important advances in the scientific understanding of women’s bodies but doesn’t explain them in detail. During most of the period she covers, women were not allowed to become doctors. Elizabeth Blackwell, born in England, in 1849 became the first woman to obtain a medical degree from a U.S. medical school. In Britain in 1865, Elizabeth Garrett Anderson became the first woman to obtain a medical license.
Only White, upper-class women were likely to be treated by physicians. Most others had their babies delivered by midwives and their fevers and wounds treated by family members or local healers. However, the corpses of poor women, including executed prisoners, were sometimes obtained by doctors for dissection and anatomical study.
In 19th-century England and the United States, Black women were believed to feel less pain than White women — “racist assumptions,” notes Cleghorn, “that . . . echo insidiously through medical practice today.” In 1845, a U.S. surgeon, James Marion Sims, relied on that belief to justify performing multiple experimental operations, always without anesthesia, on three enslaved women, Anarcha, Betsey and Lucy. All three had suffered pelvic injuries during childbirth that caused urine to leak from the bladder into the vagina. Sims wanted to develop an operation that could correct this problem for other patients, but to do so, he inflicted unimaginable torture on the three women, who were powerless to refuse. Anarcha underwent his surgical experiments more than 30 times.
In the 1850s, both White and Black women joined nascent campaigns for equal rights and the vote. Political and social changes, though slow to materialize, were coming. By 1914, nurse and activist Margaret Sanger was distributing a newspaper for women suggesting home remedies and recipes to prevent unwanted pregnancy, and she soon opened a Brooklyn clinic. Though tried and jailed under vice laws, she persisted in arguing that women should have charge of their own bodies, coining the term “birth control.” Her contemporary, the British activist Marie Stopes, published a popular book to educate English women about sex and, in 1921, opened a London clinic for married women that provided care and even contraceptives. Sadly, as Cleghorn relates, despite their importance as advocates for women’s reproductive health, the records of Sanger and Stopes are tainted by their eugenicist beliefs. Sanger advocated sterilization for the “insane and feeble-minded” and those with “inheritable or transmissible diseases.” Today, her phrase “birth control” suggests overtones of control by the state or others, and is no longer commonly used.
The word “hormone” entered the medical lexicon in 1905 to describe secretions of the pancreas and was soon used for other chemical messengers produced by any of the body’s glands. For women, the 20th century became the era of hormones and hormone therapy. At last, scientists and doctors learned how the ovaries actually worked, what triggered a menstrual period, why women go through menopause. The “female” hormones estrogen and progesterone, along with others, were directing the orchestra.
The discovery of these hormones and development of drugs to mimic their effects led first to the wildly popular drug Premarin, an estrogen product that was promoted for menopausal women, and later to oral contraceptive pills, injectable or implantable contraceptives, and the medications currently approved by the Food and Drug Administration for medical abortion. Without question, these inventions changed, and are still changing, women’s lives. For drug companies, they also created blockbuster marketing opportunities.
Although menopause is a natural process, gynecologists tended to see it as an illness, one that could now be treated with a hormone product. Before and during menopause, women typically suffer “hot flashes,” changes in their periods and sometimes mood swings. For most, the symptoms are temporary. Premarin was marketed in 1941 “to relieve severe menopause symptoms,” Cleghorn reports, but it was also “touted as a relief for husbands burdened by moody, quarrelsome wives.” Women were encouraged to believe that Premarin would keep them young-looking and “Feminine Forever,” to quote the title of a book underwritten by the drug’s manufacturer. Cleghorn doesn’t mention the sequel: More than 60 years later, at least 40 percent of postmenopausal women in the United States were taking long-term hormone therapy when early results from a large, multiyear study of the treatment’s effects, the Women’s Health Initiative, were published. After following more than 27,000 women for an average of 13 years, the researchers concluded that the risks of the most commonly used regimen outweighed the benefits. Hormone treatment increased users’ risk of invasive breast cancer, stroke and blood clots, although it helped prevent hip fractures and diabetes. Hormone treatment is appropriate in certain cases, but for most women, long-term hormone therapy after menopause is no longer recommended.
Cleghorn provides bracing accounts of the rise of feminism and of the women’s health movement, including the ethical and medical controversies surrounding the development of the first oral contraceptives, in the 1950s: relatively high-dose hormone combinations. These were tested on poor women in Puerto Rico who were not warned of possible side effects or asked to give informed consent. Cleghorn recounts the formation of activist groups around the United States whose members taught women about their own bodies, lobbied the medical establishment and, in some places, illegally trained abortion providers. In the 1960s, when 1 in 6 pregnancy-related deaths was caused by unsafe abortions, activists also fought for legalization at the state level. “Our Bodies, Ourselves,” a book by the Boston Women’s Health Collective, was first published under that title in 1971 and sold more than 230,000 copies that year.
In 1981, activist Byllye Avery launched the National Black Women’s Health Project to create a community where Black women could speak out about their own serious health problems, including high rates of maternal and infant mortality, breast cancer, heart and kidney disorders, lupus, and other diseases. “For too long now we’ve been told to keep our business to ourselves,” activist Lillie Pearl Allen told her audience. “Well, the business of silence is killing us.”
The scope and detail of “Unwell Women” are vast and, at times, overwhelming. Its most striking lesson is that, when it comes to women’s diseases and their treatment, false beliefs and sexist attitudes have a life of their own. At a moment when the pandemic has illuminated health disparities and when women’s reproductive rights are again threatened, the book is a call to arms for any woman who feels that doctors have not adequately addressed her illness or pain. Fittingly, Cleghorn closes with the story of her ongoing battle with lupus, which went undiagnosed for several years until it caused a pregnancy complication that almost killed her second child before his birth.
“To paraphrase the great Maya Angelou,” she writes, “when a woman tells you she is in pain, believe her the first time.”
Misdiagnosis and Myth in a Man-Made World
By Elinor Cleghorn
Dutton. 386 pp. $28