These days, the cultural conversation about illness unfolds on social media and kindred outlets. And for about five years before COVID-19, illness was the most glamorous it had been since hysteria in Freud’s heyday. Like with an autoimmune disease, there are periods of remission during which popular culture doesn’t dwell on such downfalls much—but then the focus flares. The COVID-19 pandemic is likely to alter our views on sickness, if it hasn’t already. The ill are no longer outliers, and the run-of-the-mill are harder to eroticize. But before its outbreak, celebrities vied on Instagram and other platforms for the title of sickest-but-fairest.
Kim Kardashian only had lupus until she didn’t. Pain and swelling in her hands plus fatigue led to tests, which revealed she had antibodies associated with lupus. She fretted; was she stricken with the disorder? Tune in next week to find out—that she only had psoriatic arthritis. For her, the diagnosis was nothing but a promo clip for the next episode of Keeping Up with the Kardashians, ratings as etiology. In terms of suspense, it was a step down from parading hysterical women through a lecture hall.
Supermodel Bella Hadid grapples with Lyme disease, like Justin Bieber, while her sister Gigi combats Hashimoto’s. Tennis titan Venus Williams is saddled with Sjogren’s syndrome. After fearing, like Kardashian, that she might test positive for lupus due to a family legacy, Lady Gaga identified fibromyalgia as her nemesis in the documentary, Five Foot Two. The line between attention-seeker and advocate is as jumpy as one on a heart monitor. Are these stars brave champions or exploiters?
Though I bristle at those who merely cry wolf, I feel a connection with the true lupine luminaries. For example, whenever I see photos of Selena Gomez, the world’s most famous lupus patient, on the streets of Rome or an Australian yacht, I worry she isn’t wearing enough sunblock; UV rays fan flares. Yet in addition to sunlight, Selena is troubled by limelight. When she disappeared for several weeks to undergo chemotherapy for lupus and the press speculated that she had entered rehab, she set them straight and thereby introduced the ailment to her millions of followers on social media. With her public admissions of lupus and mental illness, Selena is constantly negotiating, before a huge audience, one of the most persistent questions a woman faces: How much should she bare?
Such celebrity testimonies seem to be refiguring cultural semiotics. I can’t say whether it was Gomez’ influence or not, but around the same time she went public with her disease, lupus gained more visibility as a sign. Suddenly, everyone I knew knew someone with lupus. It was namechecked on TV shows like Transparent, Brooklyn Nine-Nine, and The Crown. Not all of the references were respectful. In November 2020, after its reboot of Saved by the Bell mocked Gomez’ kidney transplant, which she announced on Instagram in 2017, NBC apologized for their poor judgment. Not to be outdone in bad taste, the writers of The Good Fight made a flippant reference to her transplant in a July 2021 episode, which also drew ire from Gomez and her followers.
Like the female patients at the 19th-century Salpêtrière, who were photographed by Charcot and his cohorts, sick social media stars manage to retain their allure. The difference between the Instagram age and the Salpêtrière’s reign is that now, the patients take and share their own photos. In On Photography, Susan Sontag wrote, “To photograph is to appropriate the thing photographed. . . .To take a photograph is to participate in another person’s (or thing’s) mortality, vulnerability, mutability.” Sontag assumed someone else would be snapping the shot. But in the age of selfies, we are appropriating ourselves—or at least, a myth of ourselves that we wish to project.
Sontag was prescient about how this process would absorb us: “Needing to have reality confirmed and experience enhanced by photographs is an aesthetic consumerism to which everyone is now addicted.” For it-girls living with illness, the addiction is heightened. Photographs freeze moments of health and beauty, which they may fear will fade more quickly than those things already tend to do.
But some sick women resist their own vulnerability through photography. Actress Selma Blair, who has been upfront about her multiple sclerosis since she was diagnosed in 2018, posted a photograph of herself on Instagram in September 2019. She captioned it “Portrait of a Lady.” The image was taken by Creative Rehab NYC, who shot Blair from behind as she scrutinizes herself in the mirror. The vantage point exposes her baby-smooth bottom, which looks as if it’s never even sat beside disease. Blair wears a pink and green jacket—Chanel or a convincing knock-off—and nothing else. She clutches her shaved head and covers her genitals, fig-leaf-like, with a purse in the shape of a crab, possibly an homage to her zodiac sign of Cancer. (I’m a Cancer too, and I remember reacting with dismay, as a little girl, when I suspected my birthday marked me out for the disease.)
In the photo, Blair is sexy but not sexualized. Like Scarlett Johansson peering at her alien body in a mirror in Under the Skin, she appears fascinated by her own unknowability. That unknowability, her alien nature, keeps her from becoming a commodity. It is due to her body’s changes, her illness, and a quality more uncompromising within her. Namely, the desire to understand what she was, is, and can still be in this body, and in her own and others’ eyes.
The unflinching self-regard in this photo sets it apart from the slick, lifestyle-porn of a Kardashian image. A Kardashian wants viewers to want to be her. Blair wants it known that we can’t ever know what it’s like to walk in her shoes, because she doesn’t quite know it herself.
As Sontag suggested in Regarding the Pain of Others, her follow-up to and partial refutation of On Photography, “Perhaps the only people with the right to look at images of suffering of this extreme order are those who could do something to alleviate it.” She was speaking of war photography, but by 2020, we’ve become inured to images of atrocity. Society’s most exigent human spectacle might now be staged by individual bodies on social media. The revival of photos of ill women, over 100 years after Charcot and nearly two centuries after Parent-Duchâtelet, challenges our limits to empathize because we spend so much of our day scrolling down, past the pain.