In her wide-ranging début memoir, “A Matter of Appearance,” 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, “in the realm of psychiatry.” 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 well 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. “Now, he said to me, we can know that all this suffering was not only in your head,” 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.”