Unwell Women by Elinor Cleghorn (2021)
Unwell Women by Elinor Cleghorn (2021)
Part Two: Late Nineteenth Century-1940s
9: Suffrage and Suppression
In 1851, at the women’s rights convention in Akron, Ohio, Sojourner Truth, the lecturer and abolitionist, stood up and declared, “I am a woman’s rights.” Truth’s speech, known as “Ain’t I a Woman?,” is one of history’s most important articulations of women’s and civil rights. Truth was born into slavery. She gained her freedom in 1828. As the only slave-born representative at the convention, she spoke powerfully to the fact that rights for women had to mean rights for all women. Truth’s “women’s rights” were there in her muscles, which could “do as much work as any man”; in her strength to reap, husk, plow, chop, and mow; in her appetite, her “pint-full” intellect. Her “women’s rights” were a truth of her being and a reality of her body. Truth’s speech was incredibly inspiring to Black women and antislavery and suffrage activists. In May 1867, she gave a rousing speech at the first anniversary of the American Equal Rights Association, an organization formed at the Worcester convention to “secure Equal Rights to all American citizens, especially the right of suffrage, irrespective of race, color or sex.” In the years following the end of the Civil War and the ratification of the Thirteenth Amendment to outlaw slavery, important campaigns to extend the civil and voting rights of emancipated men left women questioning the inclusion of their rights in constitutional changes. “There is a great stir about colored men getting their rights, but not a word about the colored women,” proclaimed Truth. “And if colored men get their rights, and not colored women theirs . . . I suppose I am about the only colored woman that goes about to speak for the rights of the colored women. I want to keep the thing stirring, now that the ice is cracked” (127).
When Stuart Mill published his famous work The Subjection of Women in 1869, he argued that women’s “legal subordination” was based on entirely false assumptions about mental acuity, nervous constitution, and biological purpose. Borrowing from his wife Taylor Mill’s essay, he explained that there was nothing “natural” about the medical lore of female inferiority. But for men like the influential neurologist, psychologist, and asylum physician James Crichton-Browne-whose whole career was based on upholding male physiological and psychological supremacy-ideas like Stuart Mill’s were laughable fictions. Crichton-Browne was heavily invested in Charles Darwin’s theories of the evolutionary bases of sex differences. They were friends and collaborators who corresponded while Darwin was writing Descent of Man, and Selection in Relation to Sex (1871). For Crichton-Browne, Darwin’s theories were irrefutable proof of women’s mental and physical inferiority, and also their hereditary susceptibility to insanity, hysteria, and other diseases of the mind. How could the Mills claim the subjection of women was cultural and social when Darwin proved it was not only innate but also essential for the perpetuation and survival of the human race?
“The bodily differences between men and women which underlie their intellectual disparities are universal and intimate, and involve every organ and tissue,” declared Crichton-Browne. Female human animals, the Darwinists believed, were anabolic, which meant their metabolism was directed toward nurture and nourishment. Every cell of the female body reflected the most idealized feminine traits-“woman is more receptive, tranquil, affectionate . . . patient, trustful, compassionate, and timid.” Male creatures were katabolic-active and energetic-so they were biologically fitted for bravery, passion, independence, intellect, and “originality.” Darwinism conceded that women were more intuitive and perceptive than men. But these qualities were also indications of females’ lower position on the evolutionary ladder, because they were “characteristic of . . . a lower state of civilization.” And the proof of these inviolable gender differences, for Crichton-Browne, was in the postmortem pudding.
After supervising more than four hundred autopsies at the West Riding Pauper Lunatic Asylum in Wakefield, Yorkshire during the 1860s and 1870s, Crichton-Browne concluded that not only was the female brain smaller and lighter, but its gray matter-the region of cells involved in decision making, memory, self-control, speech, and sensory perception- was of a “lower specific gravity.” Women were protected from “male” degenerative brain diseases by their “anabolic habit” and “tranquil and sheltered lives.” But “if all this is to be altered” by allowing them to “struggle for life on equal terms with men,” they would sacrifice their immunity to the most destructive forms of insanity. Suffrage was exactly the kind of “alteration” Crichton- Browne was sure would cause incalculable injuries to women’s taxed bodies and diminished little minds. Women were already vulnerable to “functional” nervous disorders aplenty if they even entertained thoughts of a life beyond the “narrow sphere.” Imagine what “unfortunate results” would ensue if their desire for political parity were actually indulged? If a woman tried to exceed her feminine destiny, her mind-and body-would inevitably collapse under its own rebellious weight (128-30).
For centuries, many medical “cures” for women’s apparent deviancy and defiance had been punishments masquerading as therapies. Force-feeding was not a health-preservation measure; it was an unremittingly cruel tactic to break women’s resolve, to weaken their will, and to make them submit. Women’s suffrage, according to many physicians, was already a destructive illness, a dangerous pathology. By virtue of their intent to upset male supremacy, these women were displaying all the traits of mental breakdown, insane possession, and hysteria. Over the past three decades, hysteria evolved from a clinical speculation into a gendered slur. Those suffragists who fought back against the horrors of the feeding tube were resisting all the social forces that for too long had justified medicine’s attempts to diminish women’s lives and control their bodies (138-9).
10: Birth Control
Twilight sleep represented so much more than an innovation in childbirth. Tracy and Boyd promoted “painless childbirth” as a revolution in medicine’s perception of female pain. For too long, women’s pain, and their emotional relationship to it, had been dismissed and devalued. Male physicians had been the ones to assess it, measure it, and judge how it felt. But the punitive notion that women were biologically condemned to endure pain had no part in the Dämmerschlaf narrative. “It was the first time a doctor had ever admitted that I had a bad pain when I had one,” Mrs. Stewart wrote. “Just Dr. Gauss’s admitting that my pain was my pain made me comforted and happy. I felt at last that I had found a place where people realized that pain was pain” (148-9).
In 1915, Hanna Rion, a journalist for women’s publications including Ladies’ Home Journal, wrote, “In the old-fashioned days [women] . . . had no choice but to trust themselves without question in the hands of the all-wise physician, but that day is past and will return no more. Women have torn away the bandages of false-modesty, they are no longer ashamed of their bodies . . .” But Rion’s empowering words masked the disturbing dark side of twilight sleep. Women like Boyd and Carmody had experienced the Cadillac of Dämmerschlaf care. Their labors were supervised continuously; their scopolamine-morphine doses were belt-and-braces tested. Their aftercare-with its banquet lunches, indulgent “beauty-baths,” and uninterrupted sleep-was more like a spa break than a hospital convalescence. But scopolamine, in reality, had absolved them of all control over their bodies. Since their labors happened in private rooms, with only obstetricians and nurses present, no one could testify to what went on behind those padded doors. If the scopolamine worked, there would be no need to know. As Tracy and Boyd admitted, “a description of her perfect Twilight Sleep can never be given subjectively by the patient. She can only report on the imperfect ones” (150-1).
By prioritizing women’s birth pain as a symptom that could be cured, twilight sleep transformed childbirth into a pathological process that required operative and narcotic intervention as the norm, not the exception. Scopolamine could be offered only in hospitals and clinics, and twilight births had to be managed by obstetric physicians, most of whom, at the time, were male. For physicians who argued that medical intervention was essential for improving the country’s woeful maternal mortality rates, this was a canny way of wresting childbirth from the hands of female midwives. In 1913, Joseph DeLee, the obstetrician who founded the Chicago Lying-In Hospital, issued a rallying cry for childbirth to always be medically managed. “Can a function so perilous,” he wrote, “that . . . kills thousands of women every year, that leaves at least a quarter of women more or less invalidated . . . that is always attended by severe pain . . . and that kills 3 to 5% of children . . . be called normal?” A few years later DeLee, who became known as the father of modern obstetrics, used the “twilight sleep craze” to justify his “prophylactic forceps operation.” For him, the demand for painless births proved that tokophobia-fear of pregnancy-had become endemic. His birth method consisted of sedative scopolamine injections in the early stages, ether in the second stage to relieve pains, an episiotomy-an incision in the perineum and vaginal wall-to allow babies’ heads to pass more easily, and, finally, delivery using forceps. Afterward, a woman would have her placenta removed and her episiotomy site tightly stitched. DeLee proposed that these measures should be routine, and he framed their necessity around what he thought women wanted: to be left as “anatomically perfect as she was before” (152-3).
In 1915, Mary Ware Dennett, who had led the NTSA, formed the National Birth Control League, the first American organization to campaign to legalize contraception and release women from “the wretchedness of unwilling parenthood.”
Dennett had endured three unbearably painful, life-threatening births since 1900. After her first child was born, Dennett was seriously unwell. Her second baby died of starvation at three weeks old. While delivering her third, a little boy, she suffered an internal tear so severe she needed surgery. Dennett was determined to help other women prevent dangerous, unwanted pregnancies. Her own doctor refused to give her advice about birth control, despite advising her not to have any more babies. Since 1873, the Comstock Laws, a set of federal acts prohibiting the trade, circulation, and distribution of “obscene literature and articles of immoral use,” especially through the postal service, had been enforced in the United States. Under these laws, promoting information about contraceptives and abortifacients-substances to induce miscarriage-was a federal offense. Dennett was inspired by the activist efforts of Margaret Sanger, the American nurse, sex education pioneer, and birth control activist. In 1914, Sanger was indicted for distributing obscene material through her monthly newspaper, The Woman Rebel, which ran for eight issues with the slogan “No Gods, No Masters.” The newspaper was a barnstorming call for women-particularly of the working classes-to rise up against the “slavery of motherhood.”
The Woman Rebel connected reproductive choice with women’s economic emancipation. It radically redefined “a woman’s duty” as staring “the whole world in the face with a go-to-hell-look in its eyes,” having an “ideal,” and speaking and acting “in defiance of convention.” Rebel women claimed “the Right to be lazy; the Right to be an unmarried mother; the Right to destroy; the Right to create; the Right to love; the Right to live.” The first issue included writing by the anarchist philosopher Emma Goldman, features on notable “rebels” including Mary Wollstonecraft, and advice on picketing for better pay and working conditions in offices, factories, and garment houses. The Woman Rebel was also the place to find all the information needed to prevent conception.
Family Limitation contained the same message for women: of taking control of their bodies and rights through informed social disobedience. Pitched as a “nurse’s advice to women,” Sanger’s pamphlet included homespun methods to prevent a missed period. She urged her reader to act immediately if there was the slightest possibility that “male fluid had entered the vagina.” She should use laxatives daily and take a few grains of quinine every night to stop the ovum from attaching. For contraception, Sanger recommended condoms, or pessaries and sponges, and douching with Lysol, vinegar, and salt solutions, or freezing cold water. She even provided recipes for pessaries laced with “special ingredients” to “negate the effect of the male seed.” Sanger did suggest couples might try “coitus interruptus,” but she stressed that this method “requires a man of the strongest will-power.” Also, abruptly ending intercourse, Sanger warned, could leave women unsatisfied and nervously tense. Not being able to “complete her desire does her injury.”
The Woman Rebel was blasted as “obscene, lewd, lascivious and filthy.” Fearing her trial, and a possible prison sentence of five years, Sanger procured a fake passport and sought exile in Britain. In 1915, her estranged husband, William Sanger, was prosecuted for distributing Family Limitation after a copy fell into the hands of a detective working for Anthony Comstock, the US postal inspector and anti-vice blowhard for whom the laws were named (153-4).
Although Dennett blamed and shamed sex workers, she did regard prostitution as more of a social ill than a female vice. If the joys of loving sex were celebrated and encouraged, she wondered, perhaps men wouldn’t need to seek such gratification. For Sanger, prostitution was one of the dreadful consequences of economic poverty, which could be relieved if working-class women were allowed to limit their families. “There is no hope that prostitution will cease as long as there is hunger,” she wrote in 1913. Sanger, a committed socialist, had worked as a visiting nurse in the overcrowded Lower East Side. In essays published in the magazine New York Call, she revealed how Italian and Eastern European families were forced into destitution by multiple pregnancies. Kept in the dark about how to prevent conception, married women sought so-called back-alley abortions. She had attended women left butchered by clumsy curettage, which could cause fatal sepsis. Around a hundred thousand “criminal” abortions were taking place annually in the United States, she claimed, with an estimated six thousand of these resulting in death. Sanger did not support abortion. Birth control, she was certain, would avoid “the wholesale lot of misery, expense, unhappiness and worry” caused by the “economic necessity” that was leaving women with no other choice (156).
“Margaret Sanger is going back to violate the law all over again,” Sanger stated in her Brooklyn Eagle interview. In 1917, she founded the Birth Control Review, in which she introduced the term “birth control” for the first time. “Shall We Break This Law?” asked the headline. Her answer was yes: the nation’s women had to break the law to claim their right to voluntary motherhood. Women must rise up against the “merciless machinery” that was destroying their health and vitality. Enforced motherhood was condemning mothers and wives to ill health, invalidism, and death. It was a disease tearing marriages apart and bringing prostitution, child labor, unemployment, and poverty in its wake. And ultimately, this disease would lead to the deterioration of human civilization.
Sanger, undoubtedly, was pioneering. But she held some troubling beliefs. She regarded birth control as a means to stamp out the proliferation of “children born feeble in mind and body” to working-class mothers whose excessive breeding was filling “jails and hospitals, factories and mills, insane asylums and premature graves.” In Family Limitation, she bemoaned irresponsible childbearing by women with chronic illnesses including the kidney condition Bright’s and heart disease, as well as syphilis, consumption, and mental “defects” like insanity, melancholia, and “idiocy.” Sanger did want to protect unwell women from difficult pregnancies. But at the same time, she believed birth control would prevent the nation being burdened by “diseased and defective children.” While Sanger was exiled in Britain, she met members of the neo-Malthusian movement, including the physician and sexologist Havelock Ellis, who supported “conscious conception” as a way of solving the social and biological “problems” of overpopulation. When Sanger returned to the United States, she began talking about birth control more explicitly as a civilizing force: “The quality of its citizens and not the quantity is the new keynote of civilization,” she told the Brooklyn Eagle after her clinic opened.
Where twilight sleep encouraged the “better class” of mothers to breed vociferously, birth control was touted as a measure to prevent the “lower classes” from doing the same. Sanger’s neo-Malthusian and, later, eugenic sympathies emerged over the years of her activism. But in Britain, these ableist, classist, and racist ideologies underpinned birth control campaigns from the beginning (157-8).
In 1919, the National Birth Control League in the United States dissolved. Dennett had founded the Voluntary Parenthood League, which continued to lobby for the words “prevention of conception” to be removed from the Comstock Laws. Sanger had distanced herself from Dennett’s cause-after all, she had been punished and imprisoned under the Comstock ruling. Dennett disagreed with Sanger’s new support for a bill giving doctors and health professionals the legal right to distribute information on birth control. Dennett wanted contraception advice to be available to all women of all social classes. Permitting only doctors to instruct in such matters was tantamount, Dennett believed, to “class legislation.” Sanger regarded birth control as a scientific measure, so the backing of the medical community was nonnegotiable. After the war, from 1919, Sanger articulated the need for birth control in terms of what she called “eugenic value.” In Birth Control Review, she declared that the “unshakable structure of racial betterment” rested with “free, self-determining motherhood.” Dennett didn’t share Sanger’s opinion that birth control was solely a “woman’s problem.” But as the eugenicist tenor of Sanger’s writings became sharper, so did her rhetoric about women’s duty to their nation’s future. First and foremost, Sanger believed that educating women to limit their families would bring about the “self-development” and “self-reflection” needed to improve “the quality of the race.”
Despite her use of terms like “racial regeneration,” Sanger did support the provision of birth control to Black communities. In 1929, she worked with the support of W. E. B. Du Bois, the prominent sociologist, civil rights activist, and historian, to open a birth control clinic in Harlem. Du Bois saw birth control as a way for Black women to improve their economic position and to contribute, as he put it, to the intelligence and fitness of “the black race.” In June 1932, Sanger published a special issue of Birth Control Review on the “Negro Number.” It included an essay by Du Bois, alongside others by physicians and health reformers, on the medical challenges faced by low-income Black families-especially those resulting from what Sanger called “high fertility.” Sanger, like many of the contributors, believed birth control would improve the high maternal and infant mortality rates and the “poverty and degradation” that disproportionately affected those families and communities. Some writers addressed concerns that birth control could be seen as a sinister eugenic measure to eliminate the “black race.” They insisted, instead, that birth control would lead to what physician Walter G. Alexander called “the betterment” of economic, health, and community standards for all “Negro” people, especially Black women.
In the “Negro Number,” Sanger couched what she wincingly called “the Negro Problem” in terms of her reformist attitudes toward the economic situations and health challenges of Black women. And she did not withhold her prejudice against the “feeble-minded, the insane, and the syphilitic” having children. In her 1922 book, The Pivot of Civilization, Sanger, in a statement on the principles of the American Birth Control League, stated that children should “only begotten under conditions which render possible the heritage of health.” Even though she spun these opinions through her concern for women’s welfare, her ableism was acute. She supported the sterilization of the “insane and feeble-minded,” and anyone with “inheritable or transmissible diseases.” Ever the pro-sex firebrand, Sanger insisted the operation was permissible because it wouldn’t “deprive the individual of . . . sex expression” (162-3).
Sanger continued to advocate for sterilization into the early 1930s, principally to limit the suffering of mothers and children. But the language she chose to use was pejorative and dehumanizing. In her speech of 1932, “My Way to Peace,” to the New History Society, she proposed that Congress should “keep the doors of immigration closed” to “certain aliens whose condition is known to be detrimental to the stamina of the race, such as feeble-minded, idiots, morons, insane, syphilitic, epileptic, criminal, professional prostitutes, and others . . .” For those who carried “hereditary taints,” she recommended segregation and sterilization. And any woman with a venereal disease, chronic heart or kidney condition, or any illness “where the condition of pregnancy disturbs her health” should be placed under the care of “public health nurses to instruct them in practical scientific methods of contraception in order to safeguard their lives.” Despite the hard-core tone of these statements, Sanger distanced herself from such beliefs with the rise of the Nazi regime, whose adoption of eugenic programs for the purposes of racial purity disturbed her (164-5).
12: Lifting the Curse
In 1914, a student at Stanford University was desperately searching for a cure for her period pain. Every month she suffered such awful cramps that all she could do was rest. Her mother had taken her to “every kind of doctor” but “none of them did . . . any good.” Then she met Clelia Duel Mosher, Stanford’s professor of personal hygiene and women’s medical adviser. Mosher asked her to loosen her clothing, lie with her knees flexed, and apply gentle pressure to her abdomen with one hand. She was to breathe in deeply and see how high she could raise her hand by lifting her abdominal muscles, and then observe her hand lowering as she exhaled and her muscles contracted. Mosher asked her to practice this exercise ten times, morning and night, while wearing her nightclothes. She was to make sure her room was well ventilated, and her movements smooth and rhythmical (190).
Male gynecologists, the chief peddlers of menstrual misery, had inflated “abnormal” cases and perpetuated the assumption that pain was inevitable. Mosher wanted to normalize, not pathologize. Most women didn’t need the opinions of unenlightened physicians who would demand they refrain from moving and thinking. Most healthy women could manage menstruation on their own. Mosher’s abdominal crunch regime was designed to gradually strengthen core muscles to help relieve cramps and heavy bleeding. Over the years, she taught her technique-known as Moshering-to hundreds of patients and students, and many women’s physicians adopted it in their own practices.
The theory behind Moshering was based on Mosher’s master’s research into female respiration, which disproved one of medicine’s many wildly inaccurate theories. Until 1894, it was believed that women were not anatomically able to inhale and exhale from the abdomen and diaphragm. Several nineteenth-century physiologists also thought women of the “civilized races” had evolved “costal” breathing because of their sedentary lifestyles. Others thought women must be built to respire primarily from their upper chests because the female abdomen was reserved for pregnancy. Surprisingly, physicians didn’t twig that being laced into suffocating corsets might have something to do with shallow breathing patterns. By observing one hundred women-fifteen of whom were pregnant-Mosher revealed that women were perfectly capable of diaphragmatic respiration, even into the ninth month of pregnancy. The only impediments were constrictive clothing and medical speculations. At a time when medicine and society still held such a tight grip on women’s bodies and minds, Mosher dared to let them breathe.
In 1923, after thirty years of research into two thousand women over more than twelve thousand menstrual cycles, Mosher concluded her study. She published Woman’s Physical Freedom, a groundbreaking book full of advice to relieve menstrual and menopausal “disabilities” (193-4).
Part Three: 1945-Present
15: Public Health, Private Pain
In 1946, the woman from Ohio who tested positive for syphilis during her premarital screening in 1941 fell ill with a wracking cough. An X-ray showed she had chronic bronchitis. Her hemoglobin levels were low, and a course of iron tablets made no difference. Her doctors decided to repeat the Wassermann test, which was positive. By 1948, she was constantly weak and feverish. Presuming she still had syphilis, her doctors prescribed penicillin, which had become widely available in the early 1940s after it was produced to treat Allied troops fighting in Europe. But this treatment made her even sicker. In 1949, she was admitted to the Cleveland Clinic. Her blood count and pressure were through the floor. She stayed in the hospital for just over a month. Her progress, according to her notes, was “stormy.” She was discharged on June 15. But her doctors hadn’t noticed that her pericardium, the lining around her heart, was filling with fluid. She died at home on July 15.
“Case 3,” as she was identified in the clinical report, was one of hundreds of women who developed mysterious symptoms after testing positive for syphilis. As it turned out, the Wassermann test was not an “infallible scientific method” for confirming syphilis. In fact, false-positive reactions were common, often in women with underlying, undiagnosed chronic diseases. But since the shape-shifting syphilis antibody showed up in a patient’s blood years before her symptoms appeared, she would be automatically diagnosed with and treated for syphilis while her chronic disease lay latent in her body. The fallibility of the Wassermann test was well known by then. But one of the most destructive diseases hidden beneath its false-positive bias was only just beginning to be understood.
Case 3 died from complications of systemic lupus erythematosus (SLE). SLE, usually just called lupus, had appeared in medical writings since the ninth century, when it described scaly, livid skin rashes resembling wolf bites. “Lupus” is the Latin word for wolf, and a prescient metaphor for what the disease turned out to be: an autoimmune condition caused when a person’s own antibodies viciously attack their own cells, organs, and tissues. Since the mid-late nineteenth century, when lupus was identified as a systemic disease that could damage the body beyond the skin, medicine understood that it was overwhelmingly more common in young and middle-aged women than in men. But until the 1940s, the etiology of lupus remained a mystery. Physicians had been toying with the idea that the immune system could produce an internal toxic reaction, a sort of allergy to the self, from the early 1900s. But this confounded medical logic. Immune cells were supposed to protect against disease, not cause it. But in 1948, immunologists at the Mayo Clinic found an autoimmune cell in the bone marrow of a woman with systemic lupus. They named it the LE cell. For those who believed autoimmunity was plausible, there was now a way to explain many symptoms that had been misdiagnosed in women, often with disturbing results. When the LE cell was discovered, immunologists and rheumatologists recognized that systemic lupus affected women disproportionately; what they didn’t understand was why. Today, 90 percent of people living with lupus across the world are women between the ages of fifteen and forty-four. And although medicine speculates that female sex hormones and immunological differences might be to blame, the exact reasons remain a mystery.
Just before she died, Case 3 received a blood test that showed she had the LE cell. Her lupus had gone untreated for years while her vulnerable body was pumped full of mercury, arsenic, and penicillin. The stigma of being diagnosed with syphilis left her severely depressed. After her fiancé left her, she became a recluse. Her tragic history was revealed in a study conducted at the Cleveland Clinic of five patients, all women, who developed SLE symptoms after Wassermann false positives. Other clinics hastily followed up with patients who might have suffered the same fate. In 1948, supported by a grant from the National Institutes of Health (NIH), two chronic disease specialists from Johns Hopkins began a study of 148 patients wrongly diagnosed with syphilis since the late 1930s: 104 were women; 9 had verified SLE, and 36 were strongly suspected of having it.
When the specialists Joseph Earle Moore and W. Beale Lutz published their report in 1954, they included “life tables” of a sample of patients with suspected SLE to show how their diseases had manifested since their Wassermann tests. A twenty-two-year-old was misdiagnosed with syphilis during a routine pregnancy screening in July 1949. Two months later, she suffered “depressive psychosis” and underwent electroshock therapy. In November, when she was five and a half months pregnant, she had a “therapeutic abortion.” By the time her blood revealed the LE cell, she’d had another abortion and endured years of arthritis in her fingers and hands. Thankfully, her lupus went into remission after her diagnosis in 1954.
The following year, Moore and two other chronic disease specialists, named Laurence E. Shulman and James T. Scott, published another report that included the “major clinical manifestations” of lupus. It was clear that lupus was a diverse disease that expressed in many different ways in the bodies and minds of their false-positive patients. As well as creeping into the joints, skin, eyes, heart, kidneys, lungs, and blood vessels, lupus evidently had serious effects on mental health. A cluster of women had been placed under psychiatric care after being “diagnosed” with syphilis. One, aged thirty-one when her SLE was confirmed, had been seriously unwell since her early teens with constant migraines and painful swelling in her legs. Rather than admit they were baffled, her doctors decided she was “maladjusted” and sent her to a psychoanalyst.
Over the next year her physical symptoms continued, and she became severely depressed. A physician suggested she might have SLE, but her psychiatrist was having none of it. He refused to refer her for laboratory tests and instead diagnosed her with schizophrenia and treated her with electroshock therapy. When her mental health didn’t recover, they tried to “cure” her by inducing an insulin coma. This painful and humiliating “therapy,” introduced into psychiatric treatment in the late 1920s, was supposed to promote mental clarity in patients with schizophrenia. Failing to see any improvement, her psychiatrist admitted her to a psychiatric hospital where surgeons cut away part of the frontal cortex of her brain in a brutal procedure called topectomy. After being locked up for two years, she was finally admitted for biological tests, which showed she had the LE cell. She was treated with steroids, and her disease went into remission. She was declared “OK” by another psychiatrist, although she still suffered some “emotional instability.”
It is unbearable to imagine how much these women suffered because of misdiagnoses and clinical ignorance. Moore, Shulman, and Scott showed that lupus was not a rare condition and that its varied symptoms made it very hard to diagnose. They also revealed that lupus could manifest psychologically and neurologically, making undiagnosed women vulnerable to “perhaps unnecessary psychiatric treatment.” What an understatement. And even though the LE test could confirm the disease, women still had to grapple with doctors’ assessments of their “bizarre” and “puzzling” symptoms before the possibility of lupus was even entertained. It was far easier to blame a woman’s unnamed pain on maladjustment, emotional instability, psychosis, or hypochondriasis than to admit to not knowing the cause.
It’s no wonder women’s mental health deteriorated after shameful syphilis diagnoses followed by years of doubt, dismissal, and pain. Pain is the most enduring symptom of lupus. In the absence of a clinical sign that could be observed and interpreted by a doctor, a woman’s pain was presumed to exist only in her head. In the 1950s, pain was not a clinical sign. Pain felt by a woman with undiagnosed lupus was nothing more than a subjective sensation (248-52).
The discovery of autoimmunity collided with another radical movement in medical thinking: the study of the relationship between emotional experiences and chronic diseases. Back in 1935, Helen Flanders Dunbar, the American psychologist, published Emotions and Bodily Changes, a pioneering book in the history of modern psychosomatic medicine. The term “psychosomatic,” from the ancient Greek words for mind and body, described any illness that manifested in physical symptoms thought to originate from psychological causes. It emerged from clinical research, such as Dunbar’s, into the ways that certain unexplained diseases were influenced by troubling life experiences. Unlike hysteria, psychosomatic illness was not a social construction to pathologize unruly and undesirable aspects of femininity. It didn’t imply that a sufferer’s symptoms were feigned or fictitious. But while Dunbar’s work was innovative, it set the stage for psychological diagnoses to be made instead of physiological ones when it came to elusive chronic diseases. And many of those diseases had substantial-and vastly misunderstood-emotional effects on sufferers.
It wasn’t until after World War II that the impact of trauma on health really came to the fore. In 1950, Franz Alexander, the Hungarian American psychoanalyst, described the “Holy Seven,” a group of diseases he believed were psychological. Three affected mostly women and, it would turn out, were autoimmune: thyrotoxicosis, excess production of the thyroid hormone that causes Graves’ disease; rheumatoid arthritis; and ulcerative colitis, a gastrointestinal disease that causes inflammation in the colon. So even before the biomedical origin of these diseases was discovered, their symptoms-pain, digestive issues, nervous exhaustion, etc.-had a psychosomatic reputation. By associating those diseases with emotional rather than organic causes, female sufferers were vulnerable to not only dismissal and doubt but to barbaric, pointless psychiatric interventions. These included the topectomy-which the unnamed lupus patient endured in 1951-and the lobotomy, in which surgeons drilled into the brain and severed connections in the prefrontal cortex (252-3).
16: Mothers’ Little Helpers
Today, MS is known to be three to four times more common in women than in men. The disease was first documented by Jean-Martin Charcot-who brought female hysteria to clinical and public attention in the late nineteenth century-in 1868. To this day, MS, like most diseases associated with autoimmunity, is incurable, and its exact cause remains a mystery. And despite being known to be more prevalent in women since the 1940s, the reasons for this gender disparity are still not properly understood. Medicine assumed, for most of the late nineteenth and early twentieth centuries, that MS predominantly affected men. Of course, this was a misapprehension caused by medicine’s insistence that men’s neurological and motor symptoms were deserving of diagnostic attention, while women, with their delicate female nerves, must be manifesting such symptoms in their minds. Gender bias still affects diagnoses of MS. The disease begins with nonspecific symptoms that relapse and flare, including pain, fatigue, and muscle weakness, and it can be incredibly difficult, and long-winded, for sufferers to be correctly diagnosed. Women with MS are particularly vulnerable to having their “unexplained” pain and neurological symptoms misdiagnosed as somatization disorder, a mental illness manifesting in physical symptoms for which no cause can be found. In the 1950s, if a woman went to her doctor complaining of crashing exhaustion, aching muscles, a fogged mind, and trembling hands, a tranquilizer was the perfect foil. Why bother puzzling out the cause of her cryptic symptoms when a pill might just shut her up (260-1)?
The action of estrogen was known to have a carcinogenic effect by the late 1930s. Debates had ensued about the cancer risks of both natural and synthetic estrogen. Wilson knew that advocating long-term preventative estrogen was controversial; and women themselves were obviously cautious. With his pseudofeminist hat on, he argued that prejudices about older women’s sexuality were fanning the fires of medical apprehension. By invoking the “bogeys” of breast and uterine cancer, detractors were trying to stop older women from enjoying emotionally harmonious and sexually fulfilled lives. Now that women’s average life-span was seventy-five years, medical purists and moralists had no right to withhold the “freedoms” of lifelong femininity. Why should women tolerate the depravations of “castration” when they could reach their “full personal potential”? Estrogen-enhanced women were masters “of their own destiny.” Feminist activists, at that very moment, were busting the myth of feminine fulfillment wide open, so Wilson’s appropriation of the language of women’s liberation was a pretty shrewd marketing tactic. And marketing it was.
Wilson’s research foundation received substantial donations from pharmaceutical companies, including Wyeth-Ayerst, the manufacturer of Premarin. But this wasn’t disclosed to his readers; journalists reported on Wilson’s “sponsorships” in the late 1960s, but the facts weren’t confirmed until 2002, when Wilson’s own son revealed that Wyeth-Ayerst “had paid all the expenses of writing ‘Feminine Forever.’” Wilson’s book, it turned out, was little more than an advertorial; he was essentially being paid to sugarcoat synthetic estrogen as totally natural, absolutely not carcinogenic, and entirely beneficial. Sure, he remarked, a study conducted in France in 1939 showed that estrogenic substances had a cancer-producing effect on mice. But women are not mice, Wilson helpfully reminded. He even went so far as to claim that estrogen therapy, “far from causing cancer, tends to prevent it.” In 1966, the Food and Drug Administration (FDA) investigated Wilson for his wild and baseless claims that estrogen therapy cured menopause and prevented aging, and found that he was misleading the public about the uses of the drugs he touted. But Feminine Forever wasn’t pulled from the shelves, even in drugstores, where it could still be sold as long as it wasn’t displayed alongside any prescription medications. Within seven months, Feminine Forever sold more than one hundred thousand copies. Premarin prescriptions skyrocketed. But, as was the case with tranquilizers, women were not flocking to estrogen therapy because of some persuasive medical man. Therapies like Premarin offered relief from symptoms that many women suffered through with next to no support from their doctors. Women had every right to be sexual, mentally vibrant, and energized beyond their reproductive years. Many feminists embraced estrogen therapy as a liberation. But the realities of estrogen therapy had not only been downplayed but officially suppressed. Women were regaining control of their bodies, but they were also being deliberately misled about synthetic estrogen’s effects (268-9).
From the 1930s, Margaret Sanger had been dreaming of the perfect contraceptive-a cheap, harmless, foolproof biological method that masses of women anywhere in the world could use. A pill swallowed every day was the ideal alternative to tricky diaphragms, foams, and powders, which Sanger, in typical eugenicist fashion, thought far too complicated for “intellectually retarded” women and “slum-dwellers” to use successfully. This pill, she imagined, would prevent women from resorting to sterilization; it would liberate sex from reproduction; and best of all, women’s husbands and partners wouldn’t even have to know about it. In the early 1950s, Sanger secured a grant from her friend, the biological scientist and women’s rights campaigner Katharine Dexter McCormick, to fund pharmaceutical research into hormonal contraceptives. Sanger gave the grant to Gregory Pincus, an endocrinologist and experimental biologist working in a lab in Massachusetts, so he could begin developing a pill using progestin, a newly synthesized form of progesterone, the “female” steroid hormone secreted by the corpus luteum after ovulation. By 1954, Pincus was confident the ingredients were in place for an effective pill. He recruited gynecologist John Rock to conduct a small clinical study to see if it induced “pseudopregnancy” in his infertile patients. Rock and Pincus had to go under the radar because researching and distributing contraception devices and information was still a criminal offense in Massachusetts. But the FDA would approve the pill only if a large-scale clinical trial on human women was conducted. Pincus and Rock had to find a legal way around the obstacles while still satisfying the FDA. “We need a cage of ovulating females to experiment with,” McCormick wrote to Sanger.
The first trial of Enovid was conducted in 1956 on the island of Puerto Rico, the US unincorporated territory, which already had a network of birth control clinics. It was also one of the most densely populated and poverty-stricken areas of the world. Women living in new housing projects in “slum-clearance areas” made, for Pincus and his team, ideal guinea pigs. They had a genuine need for reliable and safe contraception; many had large families and had to resort to sterilization. Many were also unable to read and write, so if they could use the pill effectively, then it was simple enough for any woman to follow the regimen. Participants were told, by hospital social workers and clinic nurses, that they were being invited to try out a new free “medicine that would keep them from having children they couldn’t afford.” As long as they were forty or under, married, living with their husbands, and had had at least two children, they were eligible. “We all jumped on it quickly and didn’t look back,” remembered Delia Mestre, one of the participants, fifty years later (270-1).
The women of Puerto Rico were regarded as submissive enough to be coerced into continuously taking an unchartered drug. “Why didn’t anyone let us make decisions for ourselves?” asked Mestre. When synthetic estrogen-mestranol-was added to the potent progestin mix in 1957, Enovid contained up to three times as much estrogen and at least ten times the amount of progestin as today’s combined birth control pills. By 1961, the year after the FDA licensed Enovid as a contraceptive, reports from Britain, Los Angeles, and New Jersey of women suffering pulmonary embolisms and thrombosis emerged in the medical press. By 1963, 272 cases of thrombosis and thirty deaths among users of the pill were reported. But the FDA still approved Enovid for long-term use. In 1964, Searle-the company producing Enovid-was forced to add a disclaimer into the pill packet leaflets stating that thrombophlebitis and pulmonary embolism were an “occasional occurrence,” but “a cause and effect relationship had not been demonstrated.” Three women in the Puerto Rico trial died suddenly of heart failure and pulmonary embolisms. Their deaths were not properly reported in the trial findings, nor were they investigated. No autopsies were ever conducted (272).
17: Our Bodies, Our Selves
It is important to understand that mystification is the primary process here,” explained Women and Their Bodies, a course book written and researched by a group of women from Boston in 1970. “It is mystification that makes us postpone going to the doctor for ‘that little pain’ since he’s such a ‘busy man.’ It is mystification that prevents us from demanding a precise explanation of what is the matter and how exactly he is going to treat it. It is mystification that causes us to become passive objects who submit to his control and supposed expertise” (279).
Across medicine’s history, physicians cried “hysteria” whenever a woman’s symptoms confounded their understanding or exceeded their knowledge. By the mid-1980s, so many chronic “women’s” diseases, including thyroid conditions like Hashimoto’s and Graves’; rheumatic diseases like lupus, rheumatoid arthritis, and Sjögren’s syndrome; and gastrointestinal disorders such as ulcerative colitis and Crohn’s-were known to be autoimmune or immune-mediated. Most of these diseases overwhelmingly affected women. Medicine was beginning to consider that women had more active immune systems and higher antibody responses, making female biology more susceptible to autoimmunity. Diagnostic criteria had been laid down; there were batteries of tests available. But autoimmunity, as a biomedical concept, had only recently been accepted across the medical community. It flouted long-established logic about how bodies work and disease occurs. And many of these diseases had a long history of being deemed hysterical-especially neurological autoimmune diseases like multiple sclerosis and also myasthenia gravis. Novelty, controversy, and gender stigma create the perfect conditions for misdiagnosis and misconception to flourish (292).
In the winter of 1984, a mysterious illness struck residents of Incline Village, an idyllic resort town on the north shore of Lake Tahoe, on the Nevada- California border. Around two hundred of the village’s twenty-thousand-strong community developed fevers, swollen glands, sore throats, and aching muscles. But as their flulike symptoms retreated, crushing exhaustion set in-and it lasted for months. The afflicted were mostly white, wealthy women in their thirties and forties who were otherwise fit and healthy. One woman was sleeping for fifteen hours a day and counting; another said she felt like a “Raggedy Ann doll without the stuffing.” Soon, many were experiencing other alarming symptoms: muscle weakness and pain, temporary paralysis, memory loss, blackouts, nightmares, and disorientation. By the following summer, the CDC had identified a possible cause. Ninety sufferers tested positive for an antibody to Epstein-Barr, the virus behind mononucleosis, or glandular fever. The press came to town, much to the chagrin of other residents and real-estate agents, who didn’t want the resort’s well-heeled reputation tarnished by contagion. A young mother with “both the illness and fresh good looks” told TV reporters she was afraid she would be “run out of town with a scarlet EBV” on her chest.
Many doctors doubted the Epstein-Barr verdict. News agencies from ABC to CBN ran stories on the “malaise of the ’80s” and “Raggedy Ann syndrome” and “the yuppie plague.” Other women with similar symptoms went to their doctors to request the test. Although they all complained of “flu-like illnesses followed by fatigue, persistent pain and neurological disturbances,” most were testing negative. Skeptical doctors doubted the illness existed at all, dismissing chronic Epstein-Barr virus syndrome, as it was known, as a “vogue disease” and a “wastebasket diagnosis.” But more outbreaks were being reported. In December 1985, it took out half the girls’ basketball team at Incline High School. Virologists and immunologists across the US scrambled to figure out the real cause of this puzzling epidemic. Women were falling ill in the thousands with symptoms that were neither psychosomatic nor hypochondriac. But the press had already made its diagnosis. Chronic Epstein-Barr was caused by being well-off, bored, and almost certainly female. Here began the history of one of the most controversial and contested modern “women’s” illnesses: myalgic encephalomyelitis, or chronic fatigue syndrome (ME/ CFS).
Since the 1930s, outbreaks of suspiciously similar illnesses in groups of women had been recorded in the US, the UK, and Europe. The most common symptoms were persistent, relapsing fatigue, pain, and muscle weakness. Many sufferers also experienced symptoms of the more “nervous” variety: insomnia, emotional upsets, and sensory dysfunctions as well as cystitis and menstrual “derangements.” In 1970, two physicians from the Department of Psychological Medicine at London’s Middlesex Hospital reviewed fifteen outbreaks of a condition called benign myalgic encephalomyelitis recorded since 1934. Many occurred among female nurses treating infectious diseases including forms of polio. These women were exposed to infections before their own illnesses took hold. But no biological or viral evidence could be found. The psychologists concluded that the high instance among women and the lack of any identifiable cause meant these outbreaks were episodes of mass hysteria. They proposed that similar cases should be called myalgia nervosa-which basically means “emotional pain.” And they chose this term specifically for its analogy with anorexia nervosa, the eating disorder and serious mental health condition that was associated, infuriatingly, with hysteria, hypochondria, and psychological delusions during the eighteenth and nineteenth centuries (301-2).
In 1992, fibromyalgia and ME/CFS were lumped together in “affective spectrum disorder,” a diagnostic category of overlapping physical and psychological conditions. This implied that debilitating pain and fatigue were primarily caused by mental ill-health conditions-including anxiety, depression, social phobia, and premenstrual dysphoria-that were decidedly feminized. Affective spectrum disorder recognized that physical symptoms exacerbated by the mind were very real for the sufferer. But undefined illnesses nevertheless invoked gendered stigma (303).
Part Two: Late Nineteenth Century-1940s
9: Suffrage and Suppression
In 1851, at the women’s rights convention in Akron, Ohio, Sojourner Truth, the lecturer and abolitionist, stood up and declared, “I am a woman’s rights.” Truth’s speech, known as “Ain’t I a Woman?,” is one of history’s most important articulations of women’s and civil rights. Truth was born into slavery. She gained her freedom in 1828. As the only slave-born representative at the convention, she spoke powerfully to the fact that rights for women had to mean rights for all women. Truth’s “women’s rights” were there in her muscles, which could “do as much work as any man”; in her strength to reap, husk, plow, chop, and mow; in her appetite, her “pint-full” intellect. Her “women’s rights” were a truth of her being and a reality of her body. Truth’s speech was incredibly inspiring to Black women and antislavery and suffrage activists. In May 1867, she gave a rousing speech at the first anniversary of the American Equal Rights Association, an organization formed at the Worcester convention to “secure Equal Rights to all American citizens, especially the right of suffrage, irrespective of race, color or sex.” In the years following the end of the Civil War and the ratification of the Thirteenth Amendment to outlaw slavery, important campaigns to extend the civil and voting rights of emancipated men left women questioning the inclusion of their rights in constitutional changes. “There is a great stir about colored men getting their rights, but not a word about the colored women,” proclaimed Truth. “And if colored men get their rights, and not colored women theirs . . . I suppose I am about the only colored woman that goes about to speak for the rights of the colored women. I want to keep the thing stirring, now that the ice is cracked” (127).
When Stuart Mill published his famous work The Subjection of Women in 1869, he argued that women’s “legal subordination” was based on entirely false assumptions about mental acuity, nervous constitution, and biological purpose. Borrowing from his wife Taylor Mill’s essay, he explained that there was nothing “natural” about the medical lore of female inferiority. But for men like the influential neurologist, psychologist, and asylum physician James Crichton-Browne-whose whole career was based on upholding male physiological and psychological supremacy-ideas like Stuart Mill’s were laughable fictions. Crichton-Browne was heavily invested in Charles Darwin’s theories of the evolutionary bases of sex differences. They were friends and collaborators who corresponded while Darwin was writing Descent of Man, and Selection in Relation to Sex (1871). For Crichton-Browne, Darwin’s theories were irrefutable proof of women’s mental and physical inferiority, and also their hereditary susceptibility to insanity, hysteria, and other diseases of the mind. How could the Mills claim the subjection of women was cultural and social when Darwin proved it was not only innate but also essential for the perpetuation and survival of the human race?
“The bodily differences between men and women which underlie their intellectual disparities are universal and intimate, and involve every organ and tissue,” declared Crichton-Browne. Female human animals, the Darwinists believed, were anabolic, which meant their metabolism was directed toward nurture and nourishment. Every cell of the female body reflected the most idealized feminine traits-“woman is more receptive, tranquil, affectionate . . . patient, trustful, compassionate, and timid.” Male creatures were katabolic-active and energetic-so they were biologically fitted for bravery, passion, independence, intellect, and “originality.” Darwinism conceded that women were more intuitive and perceptive than men. But these qualities were also indications of females’ lower position on the evolutionary ladder, because they were “characteristic of . . . a lower state of civilization.” And the proof of these inviolable gender differences, for Crichton-Browne, was in the postmortem pudding.
After supervising more than four hundred autopsies at the West Riding Pauper Lunatic Asylum in Wakefield, Yorkshire during the 1860s and 1870s, Crichton-Browne concluded that not only was the female brain smaller and lighter, but its gray matter-the region of cells involved in decision making, memory, self-control, speech, and sensory perception- was of a “lower specific gravity.” Women were protected from “male” degenerative brain diseases by their “anabolic habit” and “tranquil and sheltered lives.” But “if all this is to be altered” by allowing them to “struggle for life on equal terms with men,” they would sacrifice their immunity to the most destructive forms of insanity. Suffrage was exactly the kind of “alteration” Crichton- Browne was sure would cause incalculable injuries to women’s taxed bodies and diminished little minds. Women were already vulnerable to “functional” nervous disorders aplenty if they even entertained thoughts of a life beyond the “narrow sphere.” Imagine what “unfortunate results” would ensue if their desire for political parity were actually indulged? If a woman tried to exceed her feminine destiny, her mind-and body-would inevitably collapse under its own rebellious weight (128-30).
For centuries, many medical “cures” for women’s apparent deviancy and defiance had been punishments masquerading as therapies. Force-feeding was not a health-preservation measure; it was an unremittingly cruel tactic to break women’s resolve, to weaken their will, and to make them submit. Women’s suffrage, according to many physicians, was already a destructive illness, a dangerous pathology. By virtue of their intent to upset male supremacy, these women were displaying all the traits of mental breakdown, insane possession, and hysteria. Over the past three decades, hysteria evolved from a clinical speculation into a gendered slur. Those suffragists who fought back against the horrors of the feeding tube were resisting all the social forces that for too long had justified medicine’s attempts to diminish women’s lives and control their bodies (138-9).
10: Birth Control
Twilight sleep represented so much more than an innovation in childbirth. Tracy and Boyd promoted “painless childbirth” as a revolution in medicine’s perception of female pain. For too long, women’s pain, and their emotional relationship to it, had been dismissed and devalued. Male physicians had been the ones to assess it, measure it, and judge how it felt. But the punitive notion that women were biologically condemned to endure pain had no part in the Dämmerschlaf narrative. “It was the first time a doctor had ever admitted that I had a bad pain when I had one,” Mrs. Stewart wrote. “Just Dr. Gauss’s admitting that my pain was my pain made me comforted and happy. I felt at last that I had found a place where people realized that pain was pain” (148-9).
In 1915, Hanna Rion, a journalist for women’s publications including Ladies’ Home Journal, wrote, “In the old-fashioned days [women] . . . had no choice but to trust themselves without question in the hands of the all-wise physician, but that day is past and will return no more. Women have torn away the bandages of false-modesty, they are no longer ashamed of their bodies . . .” But Rion’s empowering words masked the disturbing dark side of twilight sleep. Women like Boyd and Carmody had experienced the Cadillac of Dämmerschlaf care. Their labors were supervised continuously; their scopolamine-morphine doses were belt-and-braces tested. Their aftercare-with its banquet lunches, indulgent “beauty-baths,” and uninterrupted sleep-was more like a spa break than a hospital convalescence. But scopolamine, in reality, had absolved them of all control over their bodies. Since their labors happened in private rooms, with only obstetricians and nurses present, no one could testify to what went on behind those padded doors. If the scopolamine worked, there would be no need to know. As Tracy and Boyd admitted, “a description of her perfect Twilight Sleep can never be given subjectively by the patient. She can only report on the imperfect ones” (150-1).
By prioritizing women’s birth pain as a symptom that could be cured, twilight sleep transformed childbirth into a pathological process that required operative and narcotic intervention as the norm, not the exception. Scopolamine could be offered only in hospitals and clinics, and twilight births had to be managed by obstetric physicians, most of whom, at the time, were male. For physicians who argued that medical intervention was essential for improving the country’s woeful maternal mortality rates, this was a canny way of wresting childbirth from the hands of female midwives. In 1913, Joseph DeLee, the obstetrician who founded the Chicago Lying-In Hospital, issued a rallying cry for childbirth to always be medically managed. “Can a function so perilous,” he wrote, “that . . . kills thousands of women every year, that leaves at least a quarter of women more or less invalidated . . . that is always attended by severe pain . . . and that kills 3 to 5% of children . . . be called normal?” A few years later DeLee, who became known as the father of modern obstetrics, used the “twilight sleep craze” to justify his “prophylactic forceps operation.” For him, the demand for painless births proved that tokophobia-fear of pregnancy-had become endemic. His birth method consisted of sedative scopolamine injections in the early stages, ether in the second stage to relieve pains, an episiotomy-an incision in the perineum and vaginal wall-to allow babies’ heads to pass more easily, and, finally, delivery using forceps. Afterward, a woman would have her placenta removed and her episiotomy site tightly stitched. DeLee proposed that these measures should be routine, and he framed their necessity around what he thought women wanted: to be left as “anatomically perfect as she was before” (152-3).
In 1915, Mary Ware Dennett, who had led the NTSA, formed the National Birth Control League, the first American organization to campaign to legalize contraception and release women from “the wretchedness of unwilling parenthood.”
Dennett had endured three unbearably painful, life-threatening births since 1900. After her first child was born, Dennett was seriously unwell. Her second baby died of starvation at three weeks old. While delivering her third, a little boy, she suffered an internal tear so severe she needed surgery. Dennett was determined to help other women prevent dangerous, unwanted pregnancies. Her own doctor refused to give her advice about birth control, despite advising her not to have any more babies. Since 1873, the Comstock Laws, a set of federal acts prohibiting the trade, circulation, and distribution of “obscene literature and articles of immoral use,” especially through the postal service, had been enforced in the United States. Under these laws, promoting information about contraceptives and abortifacients-substances to induce miscarriage-was a federal offense. Dennett was inspired by the activist efforts of Margaret Sanger, the American nurse, sex education pioneer, and birth control activist. In 1914, Sanger was indicted for distributing obscene material through her monthly newspaper, The Woman Rebel, which ran for eight issues with the slogan “No Gods, No Masters.” The newspaper was a barnstorming call for women-particularly of the working classes-to rise up against the “slavery of motherhood.”
The Woman Rebel connected reproductive choice with women’s economic emancipation. It radically redefined “a woman’s duty” as staring “the whole world in the face with a go-to-hell-look in its eyes,” having an “ideal,” and speaking and acting “in defiance of convention.” Rebel women claimed “the Right to be lazy; the Right to be an unmarried mother; the Right to destroy; the Right to create; the Right to love; the Right to live.” The first issue included writing by the anarchist philosopher Emma Goldman, features on notable “rebels” including Mary Wollstonecraft, and advice on picketing for better pay and working conditions in offices, factories, and garment houses. The Woman Rebel was also the place to find all the information needed to prevent conception.
Family Limitation contained the same message for women: of taking control of their bodies and rights through informed social disobedience. Pitched as a “nurse’s advice to women,” Sanger’s pamphlet included homespun methods to prevent a missed period. She urged her reader to act immediately if there was the slightest possibility that “male fluid had entered the vagina.” She should use laxatives daily and take a few grains of quinine every night to stop the ovum from attaching. For contraception, Sanger recommended condoms, or pessaries and sponges, and douching with Lysol, vinegar, and salt solutions, or freezing cold water. She even provided recipes for pessaries laced with “special ingredients” to “negate the effect of the male seed.” Sanger did suggest couples might try “coitus interruptus,” but she stressed that this method “requires a man of the strongest will-power.” Also, abruptly ending intercourse, Sanger warned, could leave women unsatisfied and nervously tense. Not being able to “complete her desire does her injury.”
The Woman Rebel was blasted as “obscene, lewd, lascivious and filthy.” Fearing her trial, and a possible prison sentence of five years, Sanger procured a fake passport and sought exile in Britain. In 1915, her estranged husband, William Sanger, was prosecuted for distributing Family Limitation after a copy fell into the hands of a detective working for Anthony Comstock, the US postal inspector and anti-vice blowhard for whom the laws were named (153-4).
Although Dennett blamed and shamed sex workers, she did regard prostitution as more of a social ill than a female vice. If the joys of loving sex were celebrated and encouraged, she wondered, perhaps men wouldn’t need to seek such gratification. For Sanger, prostitution was one of the dreadful consequences of economic poverty, which could be relieved if working-class women were allowed to limit their families. “There is no hope that prostitution will cease as long as there is hunger,” she wrote in 1913. Sanger, a committed socialist, had worked as a visiting nurse in the overcrowded Lower East Side. In essays published in the magazine New York Call, she revealed how Italian and Eastern European families were forced into destitution by multiple pregnancies. Kept in the dark about how to prevent conception, married women sought so-called back-alley abortions. She had attended women left butchered by clumsy curettage, which could cause fatal sepsis. Around a hundred thousand “criminal” abortions were taking place annually in the United States, she claimed, with an estimated six thousand of these resulting in death. Sanger did not support abortion. Birth control, she was certain, would avoid “the wholesale lot of misery, expense, unhappiness and worry” caused by the “economic necessity” that was leaving women with no other choice (156).
“Margaret Sanger is going back to violate the law all over again,” Sanger stated in her Brooklyn Eagle interview. In 1917, she founded the Birth Control Review, in which she introduced the term “birth control” for the first time. “Shall We Break This Law?” asked the headline. Her answer was yes: the nation’s women had to break the law to claim their right to voluntary motherhood. Women must rise up against the “merciless machinery” that was destroying their health and vitality. Enforced motherhood was condemning mothers and wives to ill health, invalidism, and death. It was a disease tearing marriages apart and bringing prostitution, child labor, unemployment, and poverty in its wake. And ultimately, this disease would lead to the deterioration of human civilization.
Sanger, undoubtedly, was pioneering. But she held some troubling beliefs. She regarded birth control as a means to stamp out the proliferation of “children born feeble in mind and body” to working-class mothers whose excessive breeding was filling “jails and hospitals, factories and mills, insane asylums and premature graves.” In Family Limitation, she bemoaned irresponsible childbearing by women with chronic illnesses including the kidney condition Bright’s and heart disease, as well as syphilis, consumption, and mental “defects” like insanity, melancholia, and “idiocy.” Sanger did want to protect unwell women from difficult pregnancies. But at the same time, she believed birth control would prevent the nation being burdened by “diseased and defective children.” While Sanger was exiled in Britain, she met members of the neo-Malthusian movement, including the physician and sexologist Havelock Ellis, who supported “conscious conception” as a way of solving the social and biological “problems” of overpopulation. When Sanger returned to the United States, she began talking about birth control more explicitly as a civilizing force: “The quality of its citizens and not the quantity is the new keynote of civilization,” she told the Brooklyn Eagle after her clinic opened.
Where twilight sleep encouraged the “better class” of mothers to breed vociferously, birth control was touted as a measure to prevent the “lower classes” from doing the same. Sanger’s neo-Malthusian and, later, eugenic sympathies emerged over the years of her activism. But in Britain, these ableist, classist, and racist ideologies underpinned birth control campaigns from the beginning (157-8).
In 1919, the National Birth Control League in the United States dissolved. Dennett had founded the Voluntary Parenthood League, which continued to lobby for the words “prevention of conception” to be removed from the Comstock Laws. Sanger had distanced herself from Dennett’s cause-after all, she had been punished and imprisoned under the Comstock ruling. Dennett disagreed with Sanger’s new support for a bill giving doctors and health professionals the legal right to distribute information on birth control. Dennett wanted contraception advice to be available to all women of all social classes. Permitting only doctors to instruct in such matters was tantamount, Dennett believed, to “class legislation.” Sanger regarded birth control as a scientific measure, so the backing of the medical community was nonnegotiable. After the war, from 1919, Sanger articulated the need for birth control in terms of what she called “eugenic value.” In Birth Control Review, she declared that the “unshakable structure of racial betterment” rested with “free, self-determining motherhood.” Dennett didn’t share Sanger’s opinion that birth control was solely a “woman’s problem.” But as the eugenicist tenor of Sanger’s writings became sharper, so did her rhetoric about women’s duty to their nation’s future. First and foremost, Sanger believed that educating women to limit their families would bring about the “self-development” and “self-reflection” needed to improve “the quality of the race.”
Despite her use of terms like “racial regeneration,” Sanger did support the provision of birth control to Black communities. In 1929, she worked with the support of W. E. B. Du Bois, the prominent sociologist, civil rights activist, and historian, to open a birth control clinic in Harlem. Du Bois saw birth control as a way for Black women to improve their economic position and to contribute, as he put it, to the intelligence and fitness of “the black race.” In June 1932, Sanger published a special issue of Birth Control Review on the “Negro Number.” It included an essay by Du Bois, alongside others by physicians and health reformers, on the medical challenges faced by low-income Black families-especially those resulting from what Sanger called “high fertility.” Sanger, like many of the contributors, believed birth control would improve the high maternal and infant mortality rates and the “poverty and degradation” that disproportionately affected those families and communities. Some writers addressed concerns that birth control could be seen as a sinister eugenic measure to eliminate the “black race.” They insisted, instead, that birth control would lead to what physician Walter G. Alexander called “the betterment” of economic, health, and community standards for all “Negro” people, especially Black women.
In the “Negro Number,” Sanger couched what she wincingly called “the Negro Problem” in terms of her reformist attitudes toward the economic situations and health challenges of Black women. And she did not withhold her prejudice against the “feeble-minded, the insane, and the syphilitic” having children. In her 1922 book, The Pivot of Civilization, Sanger, in a statement on the principles of the American Birth Control League, stated that children should “only begotten under conditions which render possible the heritage of health.” Even though she spun these opinions through her concern for women’s welfare, her ableism was acute. She supported the sterilization of the “insane and feeble-minded,” and anyone with “inheritable or transmissible diseases.” Ever the pro-sex firebrand, Sanger insisted the operation was permissible because it wouldn’t “deprive the individual of . . . sex expression” (162-3).
Sanger continued to advocate for sterilization into the early 1930s, principally to limit the suffering of mothers and children. But the language she chose to use was pejorative and dehumanizing. In her speech of 1932, “My Way to Peace,” to the New History Society, she proposed that Congress should “keep the doors of immigration closed” to “certain aliens whose condition is known to be detrimental to the stamina of the race, such as feeble-minded, idiots, morons, insane, syphilitic, epileptic, criminal, professional prostitutes, and others . . .” For those who carried “hereditary taints,” she recommended segregation and sterilization. And any woman with a venereal disease, chronic heart or kidney condition, or any illness “where the condition of pregnancy disturbs her health” should be placed under the care of “public health nurses to instruct them in practical scientific methods of contraception in order to safeguard their lives.” Despite the hard-core tone of these statements, Sanger distanced herself from such beliefs with the rise of the Nazi regime, whose adoption of eugenic programs for the purposes of racial purity disturbed her (164-5).
12: Lifting the Curse
In 1914, a student at Stanford University was desperately searching for a cure for her period pain. Every month she suffered such awful cramps that all she could do was rest. Her mother had taken her to “every kind of doctor” but “none of them did . . . any good.” Then she met Clelia Duel Mosher, Stanford’s professor of personal hygiene and women’s medical adviser. Mosher asked her to loosen her clothing, lie with her knees flexed, and apply gentle pressure to her abdomen with one hand. She was to breathe in deeply and see how high she could raise her hand by lifting her abdominal muscles, and then observe her hand lowering as she exhaled and her muscles contracted. Mosher asked her to practice this exercise ten times, morning and night, while wearing her nightclothes. She was to make sure her room was well ventilated, and her movements smooth and rhythmical (190).
Male gynecologists, the chief peddlers of menstrual misery, had inflated “abnormal” cases and perpetuated the assumption that pain was inevitable. Mosher wanted to normalize, not pathologize. Most women didn’t need the opinions of unenlightened physicians who would demand they refrain from moving and thinking. Most healthy women could manage menstruation on their own. Mosher’s abdominal crunch regime was designed to gradually strengthen core muscles to help relieve cramps and heavy bleeding. Over the years, she taught her technique-known as Moshering-to hundreds of patients and students, and many women’s physicians adopted it in their own practices.
The theory behind Moshering was based on Mosher’s master’s research into female respiration, which disproved one of medicine’s many wildly inaccurate theories. Until 1894, it was believed that women were not anatomically able to inhale and exhale from the abdomen and diaphragm. Several nineteenth-century physiologists also thought women of the “civilized races” had evolved “costal” breathing because of their sedentary lifestyles. Others thought women must be built to respire primarily from their upper chests because the female abdomen was reserved for pregnancy. Surprisingly, physicians didn’t twig that being laced into suffocating corsets might have something to do with shallow breathing patterns. By observing one hundred women-fifteen of whom were pregnant-Mosher revealed that women were perfectly capable of diaphragmatic respiration, even into the ninth month of pregnancy. The only impediments were constrictive clothing and medical speculations. At a time when medicine and society still held such a tight grip on women’s bodies and minds, Mosher dared to let them breathe.
In 1923, after thirty years of research into two thousand women over more than twelve thousand menstrual cycles, Mosher concluded her study. She published Woman’s Physical Freedom, a groundbreaking book full of advice to relieve menstrual and menopausal “disabilities” (193-4).
Part Three: 1945-Present
15: Public Health, Private Pain
In 1946, the woman from Ohio who tested positive for syphilis during her premarital screening in 1941 fell ill with a wracking cough. An X-ray showed she had chronic bronchitis. Her hemoglobin levels were low, and a course of iron tablets made no difference. Her doctors decided to repeat the Wassermann test, which was positive. By 1948, she was constantly weak and feverish. Presuming she still had syphilis, her doctors prescribed penicillin, which had become widely available in the early 1940s after it was produced to treat Allied troops fighting in Europe. But this treatment made her even sicker. In 1949, she was admitted to the Cleveland Clinic. Her blood count and pressure were through the floor. She stayed in the hospital for just over a month. Her progress, according to her notes, was “stormy.” She was discharged on June 15. But her doctors hadn’t noticed that her pericardium, the lining around her heart, was filling with fluid. She died at home on July 15.
“Case 3,” as she was identified in the clinical report, was one of hundreds of women who developed mysterious symptoms after testing positive for syphilis. As it turned out, the Wassermann test was not an “infallible scientific method” for confirming syphilis. In fact, false-positive reactions were common, often in women with underlying, undiagnosed chronic diseases. But since the shape-shifting syphilis antibody showed up in a patient’s blood years before her symptoms appeared, she would be automatically diagnosed with and treated for syphilis while her chronic disease lay latent in her body. The fallibility of the Wassermann test was well known by then. But one of the most destructive diseases hidden beneath its false-positive bias was only just beginning to be understood.
Case 3 died from complications of systemic lupus erythematosus (SLE). SLE, usually just called lupus, had appeared in medical writings since the ninth century, when it described scaly, livid skin rashes resembling wolf bites. “Lupus” is the Latin word for wolf, and a prescient metaphor for what the disease turned out to be: an autoimmune condition caused when a person’s own antibodies viciously attack their own cells, organs, and tissues. Since the mid-late nineteenth century, when lupus was identified as a systemic disease that could damage the body beyond the skin, medicine understood that it was overwhelmingly more common in young and middle-aged women than in men. But until the 1940s, the etiology of lupus remained a mystery. Physicians had been toying with the idea that the immune system could produce an internal toxic reaction, a sort of allergy to the self, from the early 1900s. But this confounded medical logic. Immune cells were supposed to protect against disease, not cause it. But in 1948, immunologists at the Mayo Clinic found an autoimmune cell in the bone marrow of a woman with systemic lupus. They named it the LE cell. For those who believed autoimmunity was plausible, there was now a way to explain many symptoms that had been misdiagnosed in women, often with disturbing results. When the LE cell was discovered, immunologists and rheumatologists recognized that systemic lupus affected women disproportionately; what they didn’t understand was why. Today, 90 percent of people living with lupus across the world are women between the ages of fifteen and forty-four. And although medicine speculates that female sex hormones and immunological differences might be to blame, the exact reasons remain a mystery.
Just before she died, Case 3 received a blood test that showed she had the LE cell. Her lupus had gone untreated for years while her vulnerable body was pumped full of mercury, arsenic, and penicillin. The stigma of being diagnosed with syphilis left her severely depressed. After her fiancé left her, she became a recluse. Her tragic history was revealed in a study conducted at the Cleveland Clinic of five patients, all women, who developed SLE symptoms after Wassermann false positives. Other clinics hastily followed up with patients who might have suffered the same fate. In 1948, supported by a grant from the National Institutes of Health (NIH), two chronic disease specialists from Johns Hopkins began a study of 148 patients wrongly diagnosed with syphilis since the late 1930s: 104 were women; 9 had verified SLE, and 36 were strongly suspected of having it.
When the specialists Joseph Earle Moore and W. Beale Lutz published their report in 1954, they included “life tables” of a sample of patients with suspected SLE to show how their diseases had manifested since their Wassermann tests. A twenty-two-year-old was misdiagnosed with syphilis during a routine pregnancy screening in July 1949. Two months later, she suffered “depressive psychosis” and underwent electroshock therapy. In November, when she was five and a half months pregnant, she had a “therapeutic abortion.” By the time her blood revealed the LE cell, she’d had another abortion and endured years of arthritis in her fingers and hands. Thankfully, her lupus went into remission after her diagnosis in 1954.
The following year, Moore and two other chronic disease specialists, named Laurence E. Shulman and James T. Scott, published another report that included the “major clinical manifestations” of lupus. It was clear that lupus was a diverse disease that expressed in many different ways in the bodies and minds of their false-positive patients. As well as creeping into the joints, skin, eyes, heart, kidneys, lungs, and blood vessels, lupus evidently had serious effects on mental health. A cluster of women had been placed under psychiatric care after being “diagnosed” with syphilis. One, aged thirty-one when her SLE was confirmed, had been seriously unwell since her early teens with constant migraines and painful swelling in her legs. Rather than admit they were baffled, her doctors decided she was “maladjusted” and sent her to a psychoanalyst.
Over the next year her physical symptoms continued, and she became severely depressed. A physician suggested she might have SLE, but her psychiatrist was having none of it. He refused to refer her for laboratory tests and instead diagnosed her with schizophrenia and treated her with electroshock therapy. When her mental health didn’t recover, they tried to “cure” her by inducing an insulin coma. This painful and humiliating “therapy,” introduced into psychiatric treatment in the late 1920s, was supposed to promote mental clarity in patients with schizophrenia. Failing to see any improvement, her psychiatrist admitted her to a psychiatric hospital where surgeons cut away part of the frontal cortex of her brain in a brutal procedure called topectomy. After being locked up for two years, she was finally admitted for biological tests, which showed she had the LE cell. She was treated with steroids, and her disease went into remission. She was declared “OK” by another psychiatrist, although she still suffered some “emotional instability.”
It is unbearable to imagine how much these women suffered because of misdiagnoses and clinical ignorance. Moore, Shulman, and Scott showed that lupus was not a rare condition and that its varied symptoms made it very hard to diagnose. They also revealed that lupus could manifest psychologically and neurologically, making undiagnosed women vulnerable to “perhaps unnecessary psychiatric treatment.” What an understatement. And even though the LE test could confirm the disease, women still had to grapple with doctors’ assessments of their “bizarre” and “puzzling” symptoms before the possibility of lupus was even entertained. It was far easier to blame a woman’s unnamed pain on maladjustment, emotional instability, psychosis, or hypochondriasis than to admit to not knowing the cause.
It’s no wonder women’s mental health deteriorated after shameful syphilis diagnoses followed by years of doubt, dismissal, and pain. Pain is the most enduring symptom of lupus. In the absence of a clinical sign that could be observed and interpreted by a doctor, a woman’s pain was presumed to exist only in her head. In the 1950s, pain was not a clinical sign. Pain felt by a woman with undiagnosed lupus was nothing more than a subjective sensation (248-52).
The discovery of autoimmunity collided with another radical movement in medical thinking: the study of the relationship between emotional experiences and chronic diseases. Back in 1935, Helen Flanders Dunbar, the American psychologist, published Emotions and Bodily Changes, a pioneering book in the history of modern psychosomatic medicine. The term “psychosomatic,” from the ancient Greek words for mind and body, described any illness that manifested in physical symptoms thought to originate from psychological causes. It emerged from clinical research, such as Dunbar’s, into the ways that certain unexplained diseases were influenced by troubling life experiences. Unlike hysteria, psychosomatic illness was not a social construction to pathologize unruly and undesirable aspects of femininity. It didn’t imply that a sufferer’s symptoms were feigned or fictitious. But while Dunbar’s work was innovative, it set the stage for psychological diagnoses to be made instead of physiological ones when it came to elusive chronic diseases. And many of those diseases had substantial-and vastly misunderstood-emotional effects on sufferers.
It wasn’t until after World War II that the impact of trauma on health really came to the fore. In 1950, Franz Alexander, the Hungarian American psychoanalyst, described the “Holy Seven,” a group of diseases he believed were psychological. Three affected mostly women and, it would turn out, were autoimmune: thyrotoxicosis, excess production of the thyroid hormone that causes Graves’ disease; rheumatoid arthritis; and ulcerative colitis, a gastrointestinal disease that causes inflammation in the colon. So even before the biomedical origin of these diseases was discovered, their symptoms-pain, digestive issues, nervous exhaustion, etc.-had a psychosomatic reputation. By associating those diseases with emotional rather than organic causes, female sufferers were vulnerable to not only dismissal and doubt but to barbaric, pointless psychiatric interventions. These included the topectomy-which the unnamed lupus patient endured in 1951-and the lobotomy, in which surgeons drilled into the brain and severed connections in the prefrontal cortex (252-3).
16: Mothers’ Little Helpers
Today, MS is known to be three to four times more common in women than in men. The disease was first documented by Jean-Martin Charcot-who brought female hysteria to clinical and public attention in the late nineteenth century-in 1868. To this day, MS, like most diseases associated with autoimmunity, is incurable, and its exact cause remains a mystery. And despite being known to be more prevalent in women since the 1940s, the reasons for this gender disparity are still not properly understood. Medicine assumed, for most of the late nineteenth and early twentieth centuries, that MS predominantly affected men. Of course, this was a misapprehension caused by medicine’s insistence that men’s neurological and motor symptoms were deserving of diagnostic attention, while women, with their delicate female nerves, must be manifesting such symptoms in their minds. Gender bias still affects diagnoses of MS. The disease begins with nonspecific symptoms that relapse and flare, including pain, fatigue, and muscle weakness, and it can be incredibly difficult, and long-winded, for sufferers to be correctly diagnosed. Women with MS are particularly vulnerable to having their “unexplained” pain and neurological symptoms misdiagnosed as somatization disorder, a mental illness manifesting in physical symptoms for which no cause can be found. In the 1950s, if a woman went to her doctor complaining of crashing exhaustion, aching muscles, a fogged mind, and trembling hands, a tranquilizer was the perfect foil. Why bother puzzling out the cause of her cryptic symptoms when a pill might just shut her up (260-1)?
The action of estrogen was known to have a carcinogenic effect by the late 1930s. Debates had ensued about the cancer risks of both natural and synthetic estrogen. Wilson knew that advocating long-term preventative estrogen was controversial; and women themselves were obviously cautious. With his pseudofeminist hat on, he argued that prejudices about older women’s sexuality were fanning the fires of medical apprehension. By invoking the “bogeys” of breast and uterine cancer, detractors were trying to stop older women from enjoying emotionally harmonious and sexually fulfilled lives. Now that women’s average life-span was seventy-five years, medical purists and moralists had no right to withhold the “freedoms” of lifelong femininity. Why should women tolerate the depravations of “castration” when they could reach their “full personal potential”? Estrogen-enhanced women were masters “of their own destiny.” Feminist activists, at that very moment, were busting the myth of feminine fulfillment wide open, so Wilson’s appropriation of the language of women’s liberation was a pretty shrewd marketing tactic. And marketing it was.
Wilson’s research foundation received substantial donations from pharmaceutical companies, including Wyeth-Ayerst, the manufacturer of Premarin. But this wasn’t disclosed to his readers; journalists reported on Wilson’s “sponsorships” in the late 1960s, but the facts weren’t confirmed until 2002, when Wilson’s own son revealed that Wyeth-Ayerst “had paid all the expenses of writing ‘Feminine Forever.’” Wilson’s book, it turned out, was little more than an advertorial; he was essentially being paid to sugarcoat synthetic estrogen as totally natural, absolutely not carcinogenic, and entirely beneficial. Sure, he remarked, a study conducted in France in 1939 showed that estrogenic substances had a cancer-producing effect on mice. But women are not mice, Wilson helpfully reminded. He even went so far as to claim that estrogen therapy, “far from causing cancer, tends to prevent it.” In 1966, the Food and Drug Administration (FDA) investigated Wilson for his wild and baseless claims that estrogen therapy cured menopause and prevented aging, and found that he was misleading the public about the uses of the drugs he touted. But Feminine Forever wasn’t pulled from the shelves, even in drugstores, where it could still be sold as long as it wasn’t displayed alongside any prescription medications. Within seven months, Feminine Forever sold more than one hundred thousand copies. Premarin prescriptions skyrocketed. But, as was the case with tranquilizers, women were not flocking to estrogen therapy because of some persuasive medical man. Therapies like Premarin offered relief from symptoms that many women suffered through with next to no support from their doctors. Women had every right to be sexual, mentally vibrant, and energized beyond their reproductive years. Many feminists embraced estrogen therapy as a liberation. But the realities of estrogen therapy had not only been downplayed but officially suppressed. Women were regaining control of their bodies, but they were also being deliberately misled about synthetic estrogen’s effects (268-9).
From the 1930s, Margaret Sanger had been dreaming of the perfect contraceptive-a cheap, harmless, foolproof biological method that masses of women anywhere in the world could use. A pill swallowed every day was the ideal alternative to tricky diaphragms, foams, and powders, which Sanger, in typical eugenicist fashion, thought far too complicated for “intellectually retarded” women and “slum-dwellers” to use successfully. This pill, she imagined, would prevent women from resorting to sterilization; it would liberate sex from reproduction; and best of all, women’s husbands and partners wouldn’t even have to know about it. In the early 1950s, Sanger secured a grant from her friend, the biological scientist and women’s rights campaigner Katharine Dexter McCormick, to fund pharmaceutical research into hormonal contraceptives. Sanger gave the grant to Gregory Pincus, an endocrinologist and experimental biologist working in a lab in Massachusetts, so he could begin developing a pill using progestin, a newly synthesized form of progesterone, the “female” steroid hormone secreted by the corpus luteum after ovulation. By 1954, Pincus was confident the ingredients were in place for an effective pill. He recruited gynecologist John Rock to conduct a small clinical study to see if it induced “pseudopregnancy” in his infertile patients. Rock and Pincus had to go under the radar because researching and distributing contraception devices and information was still a criminal offense in Massachusetts. But the FDA would approve the pill only if a large-scale clinical trial on human women was conducted. Pincus and Rock had to find a legal way around the obstacles while still satisfying the FDA. “We need a cage of ovulating females to experiment with,” McCormick wrote to Sanger.
The first trial of Enovid was conducted in 1956 on the island of Puerto Rico, the US unincorporated territory, which already had a network of birth control clinics. It was also one of the most densely populated and poverty-stricken areas of the world. Women living in new housing projects in “slum-clearance areas” made, for Pincus and his team, ideal guinea pigs. They had a genuine need for reliable and safe contraception; many had large families and had to resort to sterilization. Many were also unable to read and write, so if they could use the pill effectively, then it was simple enough for any woman to follow the regimen. Participants were told, by hospital social workers and clinic nurses, that they were being invited to try out a new free “medicine that would keep them from having children they couldn’t afford.” As long as they were forty or under, married, living with their husbands, and had had at least two children, they were eligible. “We all jumped on it quickly and didn’t look back,” remembered Delia Mestre, one of the participants, fifty years later (270-1).
The women of Puerto Rico were regarded as submissive enough to be coerced into continuously taking an unchartered drug. “Why didn’t anyone let us make decisions for ourselves?” asked Mestre. When synthetic estrogen-mestranol-was added to the potent progestin mix in 1957, Enovid contained up to three times as much estrogen and at least ten times the amount of progestin as today’s combined birth control pills. By 1961, the year after the FDA licensed Enovid as a contraceptive, reports from Britain, Los Angeles, and New Jersey of women suffering pulmonary embolisms and thrombosis emerged in the medical press. By 1963, 272 cases of thrombosis and thirty deaths among users of the pill were reported. But the FDA still approved Enovid for long-term use. In 1964, Searle-the company producing Enovid-was forced to add a disclaimer into the pill packet leaflets stating that thrombophlebitis and pulmonary embolism were an “occasional occurrence,” but “a cause and effect relationship had not been demonstrated.” Three women in the Puerto Rico trial died suddenly of heart failure and pulmonary embolisms. Their deaths were not properly reported in the trial findings, nor were they investigated. No autopsies were ever conducted (272).
17: Our Bodies, Our Selves
It is important to understand that mystification is the primary process here,” explained Women and Their Bodies, a course book written and researched by a group of women from Boston in 1970. “It is mystification that makes us postpone going to the doctor for ‘that little pain’ since he’s such a ‘busy man.’ It is mystification that prevents us from demanding a precise explanation of what is the matter and how exactly he is going to treat it. It is mystification that causes us to become passive objects who submit to his control and supposed expertise” (279).
Across medicine’s history, physicians cried “hysteria” whenever a woman’s symptoms confounded their understanding or exceeded their knowledge. By the mid-1980s, so many chronic “women’s” diseases, including thyroid conditions like Hashimoto’s and Graves’; rheumatic diseases like lupus, rheumatoid arthritis, and Sjögren’s syndrome; and gastrointestinal disorders such as ulcerative colitis and Crohn’s-were known to be autoimmune or immune-mediated. Most of these diseases overwhelmingly affected women. Medicine was beginning to consider that women had more active immune systems and higher antibody responses, making female biology more susceptible to autoimmunity. Diagnostic criteria had been laid down; there were batteries of tests available. But autoimmunity, as a biomedical concept, had only recently been accepted across the medical community. It flouted long-established logic about how bodies work and disease occurs. And many of these diseases had a long history of being deemed hysterical-especially neurological autoimmune diseases like multiple sclerosis and also myasthenia gravis. Novelty, controversy, and gender stigma create the perfect conditions for misdiagnosis and misconception to flourish (292).
In the winter of 1984, a mysterious illness struck residents of Incline Village, an idyllic resort town on the north shore of Lake Tahoe, on the Nevada- California border. Around two hundred of the village’s twenty-thousand-strong community developed fevers, swollen glands, sore throats, and aching muscles. But as their flulike symptoms retreated, crushing exhaustion set in-and it lasted for months. The afflicted were mostly white, wealthy women in their thirties and forties who were otherwise fit and healthy. One woman was sleeping for fifteen hours a day and counting; another said she felt like a “Raggedy Ann doll without the stuffing.” Soon, many were experiencing other alarming symptoms: muscle weakness and pain, temporary paralysis, memory loss, blackouts, nightmares, and disorientation. By the following summer, the CDC had identified a possible cause. Ninety sufferers tested positive for an antibody to Epstein-Barr, the virus behind mononucleosis, or glandular fever. The press came to town, much to the chagrin of other residents and real-estate agents, who didn’t want the resort’s well-heeled reputation tarnished by contagion. A young mother with “both the illness and fresh good looks” told TV reporters she was afraid she would be “run out of town with a scarlet EBV” on her chest.
Many doctors doubted the Epstein-Barr verdict. News agencies from ABC to CBN ran stories on the “malaise of the ’80s” and “Raggedy Ann syndrome” and “the yuppie plague.” Other women with similar symptoms went to their doctors to request the test. Although they all complained of “flu-like illnesses followed by fatigue, persistent pain and neurological disturbances,” most were testing negative. Skeptical doctors doubted the illness existed at all, dismissing chronic Epstein-Barr virus syndrome, as it was known, as a “vogue disease” and a “wastebasket diagnosis.” But more outbreaks were being reported. In December 1985, it took out half the girls’ basketball team at Incline High School. Virologists and immunologists across the US scrambled to figure out the real cause of this puzzling epidemic. Women were falling ill in the thousands with symptoms that were neither psychosomatic nor hypochondriac. But the press had already made its diagnosis. Chronic Epstein-Barr was caused by being well-off, bored, and almost certainly female. Here began the history of one of the most controversial and contested modern “women’s” illnesses: myalgic encephalomyelitis, or chronic fatigue syndrome (ME/ CFS).
Since the 1930s, outbreaks of suspiciously similar illnesses in groups of women had been recorded in the US, the UK, and Europe. The most common symptoms were persistent, relapsing fatigue, pain, and muscle weakness. Many sufferers also experienced symptoms of the more “nervous” variety: insomnia, emotional upsets, and sensory dysfunctions as well as cystitis and menstrual “derangements.” In 1970, two physicians from the Department of Psychological Medicine at London’s Middlesex Hospital reviewed fifteen outbreaks of a condition called benign myalgic encephalomyelitis recorded since 1934. Many occurred among female nurses treating infectious diseases including forms of polio. These women were exposed to infections before their own illnesses took hold. But no biological or viral evidence could be found. The psychologists concluded that the high instance among women and the lack of any identifiable cause meant these outbreaks were episodes of mass hysteria. They proposed that similar cases should be called myalgia nervosa-which basically means “emotional pain.” And they chose this term specifically for its analogy with anorexia nervosa, the eating disorder and serious mental health condition that was associated, infuriatingly, with hysteria, hypochondria, and psychological delusions during the eighteenth and nineteenth centuries (301-2).
In 1992, fibromyalgia and ME/CFS were lumped together in “affective spectrum disorder,” a diagnostic category of overlapping physical and psychological conditions. This implied that debilitating pain and fatigue were primarily caused by mental ill-health conditions-including anxiety, depression, social phobia, and premenstrual dysphoria-that were decidedly feminized. Affective spectrum disorder recognized that physical symptoms exacerbated by the mind were very real for the sufferer. But undefined illnesses nevertheless invoked gendered stigma (303).