A Memoir of Contested Illness That Takes On the Legacy of Hysteria

In her wide-ranging début memoir, “ ,” Emily Wells recounts an early memory of watching a videotaped performance in a ballet recital. She danced well: her movements were quick and precise, and her features carefully composed. But, as soon as she was safely back in the wings of the theatre, she winced in pain and collapsed on the floor.

Wells has suffered from an unknown ailment since childhood that has caused an array of mysterious and debilitating symptoms. At one point, her sense of taste was so powerful that she couldn’t eat much, her hair thinned, and she was constantly dizzy. As her condition worsened, she lost what her ballet teacher called “muscular sanity,” and with it her ability to participate in the life of the studio and stage.

Her mother escorted her to a legion of doctors. Specialists subjected her to a battery of tests but found no sickness that matched her symptoms. When her doctors couldn’t locate a physical origin for Wells’s illness, they suggested that her case might be, as one doctor put it, “ ” More than once she was tactfully reminded that “women, especially women under a great deal of physical or emotional stress, often do not realize they are experiencing anxiety or that this anxiety is what causes ailments that seem physical in origin.

” Wells’s doctors offered her painkillers and put her on an antidepressant, hoping that the former would mask her symptoms and the latter would treat whatever was wrong with her mind. Not only did the drugs fail to remedy her existing symptoms but they also created new ones. When Wells stopped taking the antidepressant, she worried that this was yet another data point for her doctors—more evidence of psychiatric disturbance.

Wells was caught in a double bind: because her body wouldn’t offer a cogent story, all she could do was remain steadfast in seeking care and plead her case to her doctors more forcefully. But describing her systems more forcefully, Wells knew, could be interpreted as further evidence of mental disturbance. “If you present as composed, poised, you will seem too to be suffering as much as you say,” she writes.

“If you present as distressed, the distress serves as an easy scapegoat, the reason you feel so unwell. ” The more Wells argued that her pain was not “all in her head,” the more she feared it would appear that it was. To prove that her illness was physical and thus “real,” she decided she had to perform the role of a “sane” and good patient—she had to conform to type.

Wells excelled at this performance. Ballet had already taught her how to marshal control over her gestures, to smooth over her pain for the sake of appearance. “Dancers, I thought, were ideal patients,” she writes, “compliant, receptive to critique, and pleased to solve problems through bodily manipulation.

” Wells learned to track her bodily feelings and present them to doctors dispassionately. “Always: nerve pain, inflamed joints, nausea, fatigue, oral ulcerations, general susceptibility to infection,” she lists. “Often: swollen lymph nodes, rashes, fever, dizziness, pins and needles, difficulty standing, muscle spasms, sensitivity to light, inability to digest food.

Sometimes: hair loss, migraines, fainting. ” Like many who are sick and under scrutiny, Wells became practiced at covering the signs of her illness in public, masking evidence of her condition with hair extensions, makeup, and brighter clothes. She learned to “appear more awake and alive, in a way I hoped was not obvious, because I believed that complicity in my own oppression was in poor taste,” she writes.

“I felt that if I didn’t capture some image of health for myself, even one that was the result of concealed labor, I might soon be unable to conjure one. ” But her performance came at a cost: over time, she began to see her body the way that her doctors did, as a collection of symptoms requiring treatment—a quantified self, broken down into discrete data points, in lieu of an integrated whole. She writes, “I would come to think of the diagnostic process as a devil’s bargain the sick must make with the market in order to receive care necessary to survive.

” After years of doctors’ appointments, Wells was able to put a name to her illness. She suffered from burning lesions, which a gynecologist eventually identified as a possible symptom of a rare autoimmune disorder called Behçet’s disease. Wells consulted a rheumatologist, who confirmed the diagnosis.

Yet little changed with the gift of diagnostic clarity. Because there is no cure for Behçet’s disease, Wells’s treatment options were limited. She continued to receive care focussed on muting her pain.

The rheumatologist told her that she was lucky: unlike many people suffering from autoimmune disorders, she had found out what was wrong with her. “ he said to me, ” she writes. Still, on her way out of the door, he offered her an antidepressant.

The double bind that Wells describes in “A Matter of Appearance” is likely familiar to those with chronic illnesses, especially those which are contested. Contested illnesses are often associated with women, who are less likely to have their medical symptoms taken seriously and more likely to be interpreted as experiencing mental-health issues. Wells tries to find a way out of this knot by putting it into words.

The subject of her book, part memoir, part manifesto, is how the ill are obliged to perform the “right” kind of pain in order to be eligible for care. In Wells’s hands, the diagnostic process emerges as a dance of doctor and patient, a series of complex and socially mediated negotiations between the person demanding care and the person in charge of delivering it. That a patient might make a performance of sickness, exaggerating some aspects of her condition and minimizing others, Wells stresses, does not mean that the sickness is false: staging and scripting illness is often the only way to obtain treatment.

Memoirs of contested illness are often focussed on proving that these conditions are biological, not psychological. But Wells is more interested in what her doctors see when they look at her: a depressed or anxious woman, perhaps even one who is malingering or protesting or faking sickness for attention. She becomes fascinated by the history of mental illness, turning to photographs and medical records of nineteenth-century female patients who received the now outmoded diagnosis of hysteria (known today as conversion disorder).

Wells fought for her diagnosis; her condition turned out to be physical. Yet her illness was misunderstood and often dismissed by doctors; for a long time, she was considered to be “categorically deceitful,” her pain a matter of the imagination. This case of mistaken identification allows Wells to venture a form of solidarity with these patients.

Drawing on the archives of sickness and her own experience as a patient, she demands a more nuanced understanding of the diagnostic categories of mental illness and biological illness—one that takes pain seriously, whether that pain originates in the body or in the mind. One that understands that, indeed, our psyches and somas are intertwined. Wells’s study, and hysteria’s modern story, begins in the eighteen-seventies, in an asylum in Paris called Salpêtrière Hospital where the French neurologist Jean-Martin Charcot offered treatment.

Charcot believed that hysteria was a hereditary neurological condition—a state akin to a hypnotic trance that caused epileptic episodes and delirium. Discovering that he could induce these symptoms through hypnosis, he began to capture his patients in photographs as they exhibited what he called “passionate attitudes,” in which, Wells writes, “the patient acted out emotional gestures: ecstasy, eroticism, auditory hallucination, amorous supplication, menace, mockery. ” As his celebrity grew, patients were trotted out to perform as the centerpiece of medical lectures and demonstrations, with Charcot playing the lion tamer.

One of the most famous of these patients was a young woman who came to be known as Louise Augustine Gleizes. Gleizes arrived at Salpêtrière at just fourteen years old, having been sexually assaulted at least twice. Once inside Charcot’s ward, her symptoms and the classic presentation of hysteria merged: she was a perfect specimen of disorder.

Wells becomes fascinated by the photographs of Gleizes under hypnosis. Charcot presented these photographs as objective documents of illness: they proved his ability to induce hysterical symptoms in patients, and thus seemed to confirm his theory that hysteria had a biological basis. Wells suggests that Gleizes’s poses might better be thought of as a half-conscious performance, an attempt to relieve her pain by acting it out before the gaze of her doctor.

Gleizes, she writes, “participated in a hospital culture of performance and spectacle in order to gain some small amount of power. It’s all she can do, really: being this perfect, sick thing is essentially her job, which she’s rather good at—following this charismatic doctor Charcot. She wants to get better, but she never does.

” Wells admits that, like Charcot, she is projecting onto Gleizes, about whose life little is known. (Upon telling her mother about her book in progress and her obsession with Gleizes, she notes, “I wait for her to point out that I am really just trying to write about myself, but she doesn’t. ”) Unlike Charcot, Wells is able to fuse with her subject, to join her in a lineage.

Gleizes, she suggests, was caught in a double bind not unlike the one Wells found herself in as a patient. The more dramatically Gleizes acted out her symptoms—and the more distress she exhibited—the more her performance seemed to confirm Charcot’s understanding of hysteria. Gleizes never got better.

Eventually, she ran away from Salpêtrière, dressed in men’s clothing. Looking for a different understanding of hysteria, Wells turns to , who studied with Charcot and came away from Salpêtrière with a radically opposed view of what he’d witnessed there. Rather than a biological condition, Freud thought that the patients’ physical symptoms were a way of communicating unconscious resistance.

If women were more likely to suffer from hysteria than men, it was because they were protesting their social limits. In his view—as hysteria originated in the mind, not the body—this condition could be cured by the patients themselves, as long as they were in the presence of someone to listen to them and help them recover the messages their bodies were trying to deliver. This was the talking cure, named by the patient Anna O.

, whom Freud turned into a case study. Charcot’s hysterics were made to dance for their care, but Freud’s patients participated in a therapeutic ritual of speech. Freud was not immune from failed treatment in this area, however.

His most famous hysteric patient, Ida Bauer, more commonly known as Dora, has become synonymous with his errors in the clinic. Dora’s case was one where, as Janet Malcolm , Freud acted “more like a police inspector interrogating a suspect than like a doctor helping a patient. ” Like Gleizes’s symptoms, Dora’s were numerous, and included a cough and the loss of her voice.

After Freud interpreted her cough, and her silence in sessions, as stemming from a repressed desire for her father’s friend, who had propositioned her, she became resistant to analysis and eventually broke off treatment. Dora’s and Gleizes’s cases, and that of Wells herself, are all three very different, but each illustrates how easy it is for resistance to a diagnosis to be read as confirmation. Charcot’s and Freud’s patients are not the only historical figures shadowing the pages of Wells’s book.

Having looked at photographs of Gleizes caught in her “passionate attitudes,” Wells notes that passion is derived from the Latin word to suffer or endure. But this was a lesson she had already learned in another domain. Dance, she observes, has long been associated with madness and excess, from the dancing plagues that broke out across medieval Europe to the anorexia and masochism associated with the choreographer and modern ballet.

As a young dancer, Wells was taught that, like the doomed heroines of “ ” and “ ,” she must happily abandon herself to the art of ballet. The symptoms and consequences of a dancer’s exertion that might look like madness and illness—blue toes, exhaustion, disordered eating—were the cost of art. The work of dance was to transform bodily suffering, to render it beautiful.

Wells learned to keep dancing, to ignore her thoughts, even when it hurt. Through dance, her body became an instrument for the story of her pain, as well as the method for covering it up, for transforming it into beauty. Despite how difficult her illness made physical exertion, Wells was reluctant to stop dancing—a reluctance that was interpreted by doctors as yet another sign of her mental illness.

As her condition progressed, ballet became harder and harder. By college, she was able to dance only in a casual capacity, using Vicodin to mask the pain. After becoming a civilian, the term of art for a nondancer, Wells turned to modelling.

Nineties-style heroin chic was in vogue, and Wells’s symptoms of illness, her physical frailty and sunken cheekbones, were no bar to working in the industry; when her agent told her “not to change a goddam thing,” Wells dryly replied that there was no need to worry. The casting process, with its line of girls waiting to be chosen, reminded her of her doctors’ appointments. Here was another performance of physical and psychic undress in exchange for a modicum of power.

Eventually, Wells found a different use for her instrument. She began writing and editing, first for a fashion-and-culture magazine in Los Angeles, and later for a progressive news site. The decision to turn to text was both liberating and pragmatic: “Writing, I decided, was something I could do without a face.

. . .

One can write from bed. ” Though a cure for her chronic pain continued to elude her, her writing provided a form of solace. Instead of turning her pain into a performance, Wells made her illness into the basis for solidarity, finding in the histories of the mad and the ill material for her protest against the contemporary medical system.

“There is so little documentation of the hysterics’ relationships with one another, and they seem to pose alone,” Wells writes. In “A Matter of Appearance,” she seeks to correct this by bringing together a class: Charcot’s patients, Freud’s patients, Balanchine’s dancers, and herself all become examples of a type—women made to pose and perform their suffering for authorities who they hope will alleviate this pain, or elevate it. As a child, Wells thought her suffering must be for something—choreographers, teachers, God, Charcot, the power of dance itself.

She now offers an account of suffering alongside and together with others. For Wells, the process of writing through chronic pain is the process of “figuring out how to write a perpetual scream—that is, how to survive my life. ” Her solution, in “A Matter of Appearance,” is not to scream, or pose, alone.

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