Is Internet Spoonie Culture Keeping People Sick?
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.
Owens’ journey through this world began at age 13, when she twisted her ankle during a play rehearsal. At first, the injury simply refused to heal. Then it was joined by debilitating gastrointestinal issues and arthritis that ultimately spread to every joint in her body. There was a diagnosis—Crohn’s disease with extraintestinal manifestations of inflammatory arthritis—but little relief, and the treatments had their own complications; among other things, the steroids doctors prescribed to control Owens’ symptoms led her to develop osteoporosis at age 26.
Eventually she became too sick to work—and sick of seeking a solution within the dysfunctional confines of the American medical system. In 2017, she and her husband sold their belongings and traveled to Amsterdam, where she underwent a six-month experimental trial to receive a bioelectronic implant that stimulates her vagus nerve.
That treatment did what dozens of more orthodox approaches couldn’t. Owens has been in full remission ever since, and has become something of a crusader on behalf of unconventional medicine that might help people like her. Some of the challenges she faces are familiar: The pace of progress is infuriatingly slow, hobbled by overcautious bureaucracy and a tangled, often nonsensical web of government regulations. The vagus nerve stimulator that proved so effective for her is still awaiting Food and Drug Administration (FDA) approval to treat inflammatory diseases, even though it has been used to treat epilepsy and other conditions since 1998.
But there’s also another set of challenges to innovation, this one from within the patient community itself.
The rise of a certain brand of extremely online identitarianism has given the chronically ill not just visibility but a tribe unto themselves, one that commands enormous attention and resources. Communities of the afflicted cluster on platforms like Tumblr and Instagram, sharing stories, tips, and memes centered on the experience of being chronically or mentally ill. The content can range from cheeky (“Hot girls have IBS” [irritable bowel syndrome]) to devastating (sobbing hospital videos) to deeply weird (there’s a whole world of TikTok videos in which people with self-diagnosed dissociative identity disorder, formerly known as multiple personality syndrome, appear to shift from personality to personality like they’re changing outfits), but it all boils down to the same thing: an identity founded on being sick.
This, as it turns out, can be a problem if you’re a sick person who has hopes of someday getting better.
Online, the chronically ill identify themselves as “spoonies.” The term traces to a 2003 blog post by Christine Miserandino, who used spoons as a metaphor to explain the finite supply of energy she has as a chronically ill person. Showering costs a spoon, maybe more than one if you need to shave your legs—as do commuting, socializing, working, working out. The spoon th
Article from Reason.com