Is Online Illness Culture Keeping People Sick?

WHILE THE FDA KEEPS EXPERIMENTAL TREATMENTS OUT OF REACH, THE SPOONIE WORLD MAKES A DIAGNOSIS INTO AN IDENTITY.

- KAT ROSENFIELD

BEFORE THE PSYCHOTIC break, the fistfighting, and his life’s eventual devolution into an anarcho-terrorist fever dream, the nameless narrator of Fight Club spends his free time attending support group meetings for diseases he doesn’t have. Lymphoma, tuberculosis, parasites, cancer: It’s not about the condition, but the catharsis of being in a room with people who are suffering and see each other’s suffering. They sip coffee. They make confessions. They hold each other and cry—and then they go home, knowing they’ll be back next week to do it all over again.

In the context of the movie, this is understood to be an absurd spectacle of human pathos. This is, after all, a film whose narrator eventually finds that beating other men to a pulp with his bare hands is a far better cure than communal crying for his male existential malaise. But it also reveals something deeper about the human condition, how sickness can become the lens through which we understand ourselves. There’s a sense of community, of nobility, of a certain dignity in these spaces, where it’s OK not to be OK. Like the movie says: “When people think you’re dying, they really, really listen to you, instead of just waiting for their turn to speak.”

Kelly Owens, author of the Wandering Nerve newsletter, is well-versed in the dynamics that govern the spaces where people with chronic illness gather, in part because she was once one of them. What she sees is an online culture that serves as a valuable resource and source of community to many, but has become increasingly invested in the idea of disability as an identity— sometimes at the expense of scientific curiosity, of innovative research, and of hope for a cure.