Ugly Stories, Boring Pictures, Invisible Illness

What does pain look like? Often, nothing at all. Many people experience illness and pain but don't look sick, as the phrase goes. Visibility seems an insurmountable aim. It's not. Though challenging, representing pain reveals a complex, experiential kaleidoscope of cultural contexts, political constructs, and physiological processes that defy language.

So many — especially women, from whom this performative expression is expected — are told they look okay before receiving a diagnosis. Whether medical professionals believe them is often tied to their ability to look the part.

Since Elaine Scarry asserted in 1985 that pain is unsharable and destroys language, inexpressibility has dominated the discourse. Is visual depiction as fraught as language?

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At Gucci's Spring/Summer 2020 show in Milan, the Italian luxury brand stirred up controversy with models in straitjackets and institutional uniforms, ferried down a conveyor belt in a clinical, white room. One model held up their hands in silent protest, the words "Mental Health is Not Fashion" scrawled in black marker across their palms. The message, however well-intended, is untrue.

Fashion doesn't really start trends, it condenses and visualizes something already around us. Runway shows rely on metaphor, grasping at the most suitable euphemisms for the anxieties of the time: wearable technology prods at the surveillance state; Balenciaga and Vetements' references to Eastern Europe's 90s affinity for American exports expresses neoliberal despair; Victor and Rolf's meme-gowns ("SORRY I'M LATE I DIDN'T WANT TO COME," "I'M NOT SHY I JUST DON'T LIKE YOU") highlight the poisoning of a terminally online generation.

Anything can be fashion. As such, clothing has represented concern about mental health, illness, pain, incarceration, and the medical gaze for longer than runways have existed. There's the "pouf a l'inoculation," a women's headdress created in support of inoculation against smallpox in the 1770s, featuring: the serpent of Asclepius, representing medicine; a club, representing conquest; a rising sun, representing the king; and a flowering olive branch, representing peace and joy. Women gestured homage to guillotine victims of the French Revolution by wearing ribbons and chokers around their necks. Victorians romanticized the pale, emaciated figure withering from tuberculosis, which recurred with the "heroin chic" looks of the 1990s. In contemporary Japan, the yami-kawaii ("sick-cute") look has emerged from online subcultures and uses sickly pale skin, red puffy eyes, and accessories of fake guns, syringes, gas masks, pills, and bandages to achieve a fragile, ill aesthetic — often considered a response to stigma surrounding mental health or to the psychological duress of the 2011earthquake, tsunami and nuclear meltdown.

Gucci creative director Alessandro Michele isn't the first to use this kind of imagery in a runway show: Alexander McQueen's Spring/Summer 2001 show featured models walking through a clinical glass box that turned into white padded cells adorned with surveillance mirrors that allowed the audience to watch the models, though the models could not see the audience. McQueen reportedly told the models, "I need you to go mental" before they made their entrance.

According to Gucci, the show's opening looks were not intended to be sold. They were the "most extreme version of a uniform dictated by society and those who control it." Creative director Michele designed "these blank-styled clothes to represent how, through fashion, power is exercised over life."

To be generous, Gucci's straitjackets are in conversation with fashion's longstanding representations of "madness." The straitjacket obstructs our true, perhaps mad, nature, whereas the subsequent collection allows our nature to break free. Fashion is positioned as the antidote to restraint, enabling expression through clothes and accessories. None of this, of course, is "political."

This fantasy ethos of the fashion industry is poorly positioned to meaningfully represent the subjectivity of a sick person. And yet the use of "sick" imagery suggests a fixation on illness and pain. A runway show, at its best-executed and carried to its logical conclusion, acts as a pathography. Even so, fashion is seldom revelatory. Too often slippery metaphors and vague references reign.

Despite all this, the closest I've come to representing my illness was in my younger modeling days, when I was at my sickest — when I couldn't keep much food down and was a little thinner than usual — and my agent told me that whatever I was doing "was working," and instructed me "not to change a goddamn thing." I told her not to worry, there was nothing I could change. I would continue to look, by the standards of "heroin chic," quite all right.

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Routine settles: I perform the same doctor's visits for a decade. Sitting on an examination table, wrapped in a paper gown (that's an insipid color chosen for women: lavender, maybe), I already know what won't be visible on any test: the brutal heat through each muscle, and joint, and in my blood.

A nurse notes that I am a young woman, a former ballet dancer, (control issues, short career), have experienced recurrent episodes of fainting (restricted eating), am nauseous for extended periods of time (dramatic), experience sourceless pain everywhere (performative), and often develop rashes (neurotic). When she asks me to rate my pain on a scale of one to ten, I hesitate, unsure of how to turn a sensation into a number. Should I say nine, and risk confirming her suspicions of hyperbole, or four, and risk being misunderstood? She asks if I am anxious. I am: anxious that the problem, in the eyes of medical professionals, might never be granted the small mercy of a name.

When the nurse asks if I think I'm fat­ — eager for ambiguity to be resolved via psychology — or makes an asinine comment about my thinness, I explain as I would to a child that I eat all I can, but flavors hurt. Dry arugula meets me with a shock of spice; I am pricked by the harsh curl of cilantro in a bowl of bland rice noodles. Hunger, I explain, is often easier to bear than the sears of pain that accompany flavor, or the inevitable vomiting, diarrhea, and nosebleeds. She writes something down, furrows her brow, asks how my periods are. (Occasional.) Have I tried protein shakes?

Waiting for the doctor, I look down at my body as if for the first time, trying to see if there is anything that might indicate to an outside eye that there is a problem. Aside from some tragedy behind my thinness that could be nonchalantly guessed at, or the bruises that perpetually sprinkle my arms and legs, no matter how careful I am while moving through the world, or the general malaise of being a young woman, already so tired, I don't look sick. The thing I know to be eating away at me is invisible: in my muscles, which always ache; in my bones, prematurely inflamed with arthritis; in my blood, pain everywhere flowing through me.

As the doctor scans the page, my pain and I disappear. When he asks what I think is going on, I believe this is a positive beginning, granted authorship over my body. I brought notes about symptoms on index cards, though everything on them has been in my file for years. Since childhood, I have had flu symptoms that endure for months at a time. I am always feverish, experience pains caused by anything (light, cold, heat), get finger infections, migraines with a shimmering aura, fainting spells, ulcers along my digestive tract. As I speak, I am struck by the pity in my voice, as if speaking about someone else. It's hard, perhaps impossible, to contemplate one's medical legibility — and the chasm between what I feel and what can be found to be wrong with me — without self-pity.

The doctor clears his throat. He explains that there aren't many more tests that can be run. It concerns him that I seem anxious, and he could give me something for that. He says women, especially women under a great deal of stress, often cannot tell if they are experiencing anxiety, or they do not realize that anxiety can be the cause of ailments that seem physical in origin. He said our minds and bodies interact in mysterious ways, and that he has no reason not to believe that my physical symptoms are the result of emotional or mental distress.

I tell myself it is fine for him to cushion the air with banal assumptions. I understand that his interest is restricted to the zones stipulated by her form, and that for me to offer information that cannot be put onto the form makes each of us uncomfortable. Incorrect assumptions can't be corrected because neither of our languages is good enough. To ask, to beg the doctor to explore my situation, to ask him to inhabit my bewilderment, is pointless. A plea bargain is the best that I will get. I allow the moment to pass. Things like this didn't used to bother me so much.

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Last summer, I spent a great deal of time in archives, trying to contextualize the infamous photos of nineteenth century hysteria patients at the Salpêtrière performing their symptoms under hypnosis amid the history of medical photography. Sometimes I paused to note the heroines' costumes, which differ dramatically to convey something about their state. Fashion historian Yaara Keydar writes: "Before the[ir] attacks, the women are seen fully dressed in tight, tailored dresses, with a tight corset easily recognizable by the silhouette, their waistline emphasized and their hair worn up. In photographs taken during their attacks, however, they are shown wearing white, sheer gowns, stretching in different positions in bed, their hair loose and the curves of their bodies easily discernible."1 As writer Maayan Goldman puts it, "Both in the admission reports and in these black and white photographs, we are almost made to believe that the madwoman aesthetic is what's revealed underneath women's proper clothes once we 'peel' fashion's skin off."2

The photos were held up as documentation of symptoms to legitimize the disease. Jean-Martin Charcot, the leader of hysteria research at the Salpêtrière, hypothesized that the illness was caused by a lesion (which he never found). A woman's performance — her ability to mimic symptoms while under hypnosis, clad in a sartorial code used to signify her state of health or distress — could be just another symptom.

Though the photographs are striking as medical documents and have inspired endless art and dance performances, rooted in ambulatory automatism, it is a painting by André Brouillet, titled A Clinical Lesson at the Salpêtrière Hospital, that is the best known visual rendering of hysteria. Before the viewer has time to analyze it, to speak of color or form or style, they notice the body of Blanche, a hysteria patient, dipped back into a swoon, semi-conscious and semi-undressed. She is hypnotized by Doctor Charcot, who is giving a medical demonstration to a window-lit room of about thirty men, each of whom can be identified by name and profession. Doctors, artists, writers, and politicians attended Charcot's famed lectures, which served as the model for the modern teaching hospital. The scene depicted in the painting, appreciated by crowds at a salon hosted by the Academy of Beaux-Arts for its large canvas and overt sexuality, foretold the birth of psychoanalysis, expressed the spirit of neurology and psychology. In the painting, Charcot's gaze is out toward his audience: he is the only one not watching Blanche.

Charcot created his hysteria photographs under the influence of another painting: Fleury's Pinel Liberating the Madwoman of the Salpêtrière, depicting Doctor Pinel freeing the madwoman from her condition (he did, in fact, free the hysterics from the brutality of solitary confinement). The woman being freed from her shackles seems hardly aware that this is the case — she stares off, looking at the ground in the general direction of the painter. She emotes little; she does not appear to be in great suffering, and this does not seem to be because she is being freed. She is nothing like the posed, well-lit women in the photographs of the hysterics, there is no pose of passion, no ecstasy, her hair and cream muslin dress are not arranged with any particular care, no giggle fits, and no spasms. But directly below her left arm, which is being lifted by her liberator, we see a grotesque woman, pulling her blouse open to expose her breast, head thrown back, clamoring, crying, convulsing. She has already been freed of her chains, and those still enchained reach toward her, desperately. She has been freed of her chains, but not of her hysteria. She is so lost in the spectacle that she has created that every onlooker appears to be a director. I think this is the woman-from-hell that Charcot modeled his own women after, when he took over, in his words, the great emporium of human misery, the living museum of pathology of the Salpêtrière.

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Another patient of Charcot, the French novelist Alphonse Daudet, wrote, at the beginning of notes on his disintegration from syphilis, "Suffering is instructive." Daudet observed his fellow sufferers at Lamalou, a thermal station in southern France preferred by those recovering from — or sinking further into — syphilitic illness. Many were further along than Daudet, who uses them to predict how he might fare. His friend Edmond de Goncourt wrote in July 1880: "Poor Daudet, who is haunted by an idée fixe: the fear of degradation, and the physical shame which paralysis entails. And when you try to reassure him, he tells you that he has studied the progression of his disease among his fellow-sufferers at Lamalou: he knows what will happen to him next year, and what will happen to him the year after."

Most chronically ill people don't have such specimen comrades to help predict how they might fare. I was sick for over a decade before my illness was named Behcet's disease: autoimmune and autoinflammatory, correlated with a B51 split antigen found most frequently among those with Middle Eastern or Asian heritage. I've never met another person diagnosed with it, or rather, I don't think that I have — I wouldn't know without asking. Most patients receive a diagnosis only after they find a doctor who knows the disease exists and recognizes the symptoms: painful lesions inside the mouth, on the skin, genitals, and eyes, and along the digestive system; arthritis; inflammation of the blood vessels and veins; nerve pain; and in the worst cases, swelling of the brain. Unless the illness is caught in the midst of a flare-up, while vivid injectable dye is dripped through the veins, it doesn't show up on routine scans or tests.

Autoimmune diseases present a frontier as vast as TB in the 19th century. Ask any doctor: we don't know much about them, and even those lucky enough to receive a diagnosis — an acknowledgment that enough others suffer it to warrant a name — usually find out there isn't much to be done. Behcet's, like many autoimmune diseases, is treated symptomatically with painkillers, steroids, immunosuppressant drugs, and tumor necrosis factor-inhibitors, each of which presents new side-effects and does not address the cause of the illness.

In Illness as Metaphor, Sontag writes that cancer and tuberculosis were defined by their relationship to emotion: the perceived romanticism associated with TB, the perceived repression associated with cancer. 3 It can be difficult to accept how mainstream it was in the 70s to assert that cancer was caused by repression. The same is true now of invisible illnesses. The headaches, fatigue, and cognitive dysfunction often present in autoimmune diseases and invisible illnesses are loaded with interpretation, as is the chronic pain epidemic and the opioid crisis.

Striving for visibility feels difficult because it means bearing witness to pain that cannot be fixed, or possibly even improved. Why inflict it upon someone else? Images of the ill are received with a sense of duty, and duty can feel like pity, and pity is not the goal. Is it possible to invite the viewer not to pity, but into a better ethical response?

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Sontag saw that only a certain kind of pain-image makes its way into Western art history, which, unlike fashion, can stray from the body: "The sufferings most often deemed worthy of representation are those understood to be the product of wrath, divine or human. (Suffering from natural causes, such as illness or childbirth, is scantily represented in the history of art, that caused by accident, virtually not at all — as if there were no such thing as suffering by inadvertence or misadventure.)"4

Although tuberculosis was a popular motif in painting, chronic pain and prolonged illness are rare subjects for visual art. When you find them, they are often deathbed scenes, and say more about those gathered in the final moments than the suffering itself. Many do not foreground the body of the sick person: Luke Fildes's 1891 painting, The Doctor, commissioned as a work of social realism, depicts a pensive doctor watching over a child patient, whose face is partially obstructed by a tuft of hair. In 1947, it was featured on a USPS postage stamp for the centenary of the American Medical Association. Two years later, the AMA used the image in its campaign against nationalized medical care as proposed by President Truman: emblazoned across posters and brochures, instructing the reader to "Keep Politics Out of this Picture." Contrastingly, in Britain, the painting was used as an emblem of celebration for the National Health Service.

In Edvard Munch's By the Death Bed (Fever), the face of the sick person is again obstructed. The title subject in the series of six paintings called The Sick Child, based on his sister, dead to tuberculosis at 15, is blurred, shown in profile, staring past a doting, grieving figure toward a dark, ominous curtain. Though the series is often lauded as "a vivid study of the ravages of a degenerative disease," it isn't apparent that there is anything degenerative about the child's condition: propped up by a large pillow, she holds the hand of her caretaker, appearing to offer her some small comfort in light of her waning time. In a subsequent painting, Death in the Sickroom, Munch shifts the focus further from the girl's physical state: as she sits in a chair facing a corner of the room, she appears partially transparent. The mourners who gather around her retreat into themselves, unsure of how to address or account for the girl, who is withering away before their eyes. The scene doesn't quite depict empathy, but what it shows is preferable to pity.

The sick subject is rarely the subject. I cannot recall seeing a painting from the point of view of the person convalescing in a sickbed, or in an emergency room, or trying to write in the midst of pain-induced brain fog, which is all to say, I cannot recall ever seeing a depiction of illness that looks like my own.

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In her memoir written after the death of her husband, The Year of Magical Thinking, Joan Didion quotes Emily Post's 1922 book of etiquette, lauding its practical advice for the needs of the mourner, for its "unfailing specificity": "It is also well to prepare a little hot tea or broth, and it should be brought them upon their return without their being asked if they would care for it. Those who are in great distress want no food, but if it is handed to them, they will mechanically take it, and something warm to start digestion and stimulate impaired circulation is what they most need."5

Rereading Didion's book, I found myself again longing for some kind of shared, specific, practical language for recognizing the needs of the ill. To continue to represent a healthy, neat public self isn't my decision, exactly, but the disparity between my experience and how I present to the world makes it easy for me to understand why the hysterics expressed their revolting bodies through clothes, poses, and performance.

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Emily Wells is a Los Angeles-based writer and editor at work on her first book, which probes illness' relationship to language, art, and culture. She received an MFA in creative writing from UC Riverside and now teaches writing at UC Irvine.

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