"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."...
Within the spoonie universe, the most viral content is centered on suffering, struggle, and limitation ...
The writer Suzy Weiss has described the spoonie world as an "illness kingdom." Another word might be "institution," with all that entails—including an instinct toward self-preservation. The notion of disability as an identity category is a boon on this front, not just to patients in search of belonging or influencers building a brand, but to foundations and pharmaceutical companies that decide what drugs to develop and what research to fund. This is a world where belonging, meaning, and an enormous amount of money all derive from patients not just being sick but staying that way.
It is also, perhaps unsurprisingly, a world in which little energy is directed into the sort of boundary-pushing research and innovation that might help patients get better. Instead, it centers on what Owens calls "a narrative of how glamorous and heroic it is to own the limitations of disease, and to fight against the 'abled' system that looks to oppress disabled people." An entire economy revolves around this narrative.
A scroll through the social media pages of prominent patient foundations is illuminating. The multimillion-dollar Crohn's & Colitis Foundation, for instance, devotes many more posts to awareness raising, community building, and visibility for Crohn's sufferers than it does to advancing clinical trials or groundbreaking research...
Meanwhile, popular hashtags (#ownyourcrohns, #crohnswarrior) position the condition as more a lifestyle than a disease, and the community's influencers are far more likely to post lingerie-clad selfies that display their ostomy bags than raise hell demanding access to unorthodox treatment pathways. Indeed, the notion of finding a cure for Crohn's is markedly absent from the majority of the conversations surrounding it, and many patients are too beaten down by repeated disappointment to continue hoping for one. It's no surprise that many choose to focus instead on the more manageable-seeming goal of battling the abled system for incremental accommodations to their needs.
As a result, the community's influencers can be profoundly hostile toward those who see disease as a problem to be solved rather than an identity to be protected. Under this paradigm, the desire to be healthy becomes "internalized ableism." Treatment becomes "conversion therapy," or eugenics, or a vicious crusade to stop disabled people from existing. And dissent from that model, even by patients themselves, becomes intolerable. People like Owens are treated not as fellow travelers but enemies, apostates. Any time she writes critically about this and related issues, her replies on social media fill with backlash. As one commenter replied: "You just hate chronically ill people."...
Spoonies frequently suffer from what are known as "functional disorders," which stem from dysregulation in the nervous system rather than organic disease or infection. Just as nerve damage or a spinal cord injury interrupts the connection between body and brain—yielding touch without sensation, injury without pain— these disorders produce an inverse phenomenon, pain (or other symptoms) without a corresponding physiological cause. Functional disorders are where the conventional dismissal of a problem as "all in your head" meets the frightening truth that in your head is still a real place, and what happens in there has real consequences which are also largely out of your control.
Needless to say, functional disorders are among the most difficult to treat, leading many medical providers to treat them—and the patients who suffer from them—with skepticism.
"The biggest problem with these conversations is that the narrative turns into, 'You don't believe me, you don't think I'm actually sick, you think I'm making this up,'" Owens says. "If there's not a definitive diagnostic test to say, yes this is what you have, then it becomes about being believed."
This in turn fuels a sense that the true battle is not for a treatment that will end the patient's suffering but for validation, respect, legitimacy: "The idea of fighting the oppression becomes more appealing than fighting the disease itself." As the writer Freddie de Boer has noted, "The endless search for new identity markers to validate people's status as unique or, worse, to validate their suffering is a road that has no ending."
It is also a road with no path to healing. The more entrenched the notion of disability as identity, the more difficult it becomes even to conceive of disability as a bad thing—"sowing intentional confusion about whether disabilities are harmful," de Boer wrote, which will in turn inevitably result in fewer material accommodations for the disabled.
Those accommodations, already so few and far between, are increasingly vacuumed up by those with the biggest platforms, who are invariably not the same as those with the greatest need. The result is a conversation dominated by high-achieving, high-functioning, photogenic influencers whose main concerns are things like getting extra time to complete the SAT—while the truly desperate patients go unhelped and unseen, increasingly pushed to the fringes, until they stumble upon a crack in the system that's big enough to fall through entirely...
A paper in the February 2023 volume of Comprehensive Psychiatry describes an "urgent need for increased understanding of the influence of social media on mental health," noting an explosion of functional diseases that mimic content being produced on Instagram, TikTok, and other platforms.
In one sense, what the paper's authors observed is not new. History is scattered with locally clustered functional afflictions, in which entire communities of people suddenly fall victim to inexplicable spasms, unstoppable hiccups, or—in one remarkable case involving cloistered nuns in medieval France—an uncontrollable urge to meow like cats. These outbreaks often appear to both center on and be driven by adolescent girls, though the trappings evolve over time; the dancing plagues of the 17th century are replaced in our current year, for instance, by a Tourette-like tic found on TikTok in which sufferers yell the word beans.
These symptom clusters sit uncomfortably against the backdrop of a three-year international project to control the spread of another, different kind of epidemic.
One needn't fully embrace the idea that this sort of illness is contagious to see how this might play out in a post-COVID world. If the governing class comes to believe that social media sharing can spawn its own pandemic of functional disease, transmitted not by droplets or aerosols but through the intermediary of a screen, then regulating it suddenly becomes a question not only of censorship or civil liberties but of public health.
Imagine a world in which it's widely thought that the support group attendees of Fight Club not only bought into the notion of illness and identity as inextricably intertwined, but were liable to contract testicular cancer or parasites just from attending the support group.
We have already seen how the U.S. government put its finger on the scale to curtail accurate but politically inexpedient speech under the guise of suppressing misinformation during the COVID-19 pandemic. What happens if public health authorities begin to believe that spreading awareness of disease is indistinguishable from spreading disease itself?
For Owens, the U.S. government's commitment to pushing an approved pandemic narrative at the expense of robust debate has a troubling parallel in the patient community's response to COVID, as immunosuppressed people rallied for social accommodations rather than medical progress. "Why is this not being used as a rallying cry for better research, so that you're not immunosuppressed?" she says. "Not once did I see a call for clinical trials or novel therapies. It just became about nurturing and protecting what wasn't working."
When it comes to innovative treatments for chronic illness, the entrenched identitarianism within patient communities is an obstacle to letting people try things—or at least, to getting them to a place where they want to try. This is the other battle Owens anticipates: not over bureaucratic anxieties about the spread of misinformation, not against the various regulatory hoops required by entities like the FDA, but against the determination of the community's influencers to entrench themselves in a paradigm where they can only ever be sick.
"I care so much about seeing this through, and I see the culture as such an obstacle," she says. "The extremely online patients with this mindset of disease as identity, they're the ones who are super-involved in patient foundations and speaking at pharmaceutical events and lobbying Capitol Hill."
It's not hard to imagine a scenario in which the awareness-raising identitarians eventually become locked in battle with government regulators who view spoonie culture itself as a vector for disease."
This has interesting parallels to long covid too
Liberals still tell us no one wants to be a victim
