 Kelly Owens first started experiencing chronic pain when she was a child. It started when she twisted her ankle when she was 13 years old at a play rehearsal, then all of a sudden the other ankle swelled up for no particular reason and she developed debilitating gastrointestinal issues. Eventually she developed arthritis that spread to every single joint in her body. By the time she was 26, she had been taking so much medication including steroids to try to control what was happening in her body with this immune response that she developed osteoporosis at 26. After this sort of dark night of the soul, she traveled to Amsterdam and spent six months there getting this vagus nerve implant that stimulates the nerve. She actually achieved full remission from her symptoms. She's been living a normal life. But when Kelly wrote about her recovery online, the response wasn't what you might expect. She was attacked, especially by people who continue to struggle with chronic illnesses. You're treated as though you're on a crusade to stop disabled people from existing. Journalist Kat Rosenfield wrote about Owens' story in a new article for Reason titled Is Online Illness Culture Keeping People Sick? If your identity is founded on being sick, it really precludes the possibility of getting well. Disease can be socially contagious. The dancing plagues of the 17th century are replaced in our current year, for instance, by a Tourette-like tick found on TikTok in which sufferers yell the word beans. Rosenfield writes... And when it comes to innovative treatments for chronic illness, the entrenched identitarianism within patient communities is an obstacle for letting people try things, or at least to getting them to a place where they want to try. In other words, learning to live with their symptoms becomes a trap. The problem is that accepting those limitations and then framing them as a sort of a heroic battle against not disease, but against an oppressive society that won't accommodate you can really entrench people into this identity, into this mindset that they're defined by their limitations. They're defined by how unwell they are. One of the problems with that is that in the quest to become a sort of a warrior against the oppressive, ableist society that's keeping you down, other things go by the wayside, including just like the basic hope to get better, to find a cure, you know, to be well again. If you want to be healthy, you must hate your disability, you hate this thing that makes you who you are. To get treatment, if you see illness as an identity, it can become like a form of conversion therapy. A person who orients their identity around an illness is sometimes referred to as a spoonie, which comes from a 2003 blog post by Christine Mizrandino. She used spoons as a metaphor to kind of describe the finite supply of energy that she has as a chronically ill person. And so they have to make strategic decisions day-to-day and hour-to-hour about how they expend energy lest they end up at the end of the day having spent all of their spoons and they're exhausted and they can't do anything. Spoonies have illnesses ranging from Crohn's to Lupus to chronic Lyme disease and now, long COVID. Understandably, spoonies are seeking a community, people who believe them. It's important to note that spoonies are not attention seekers, they're not making it up, it's not all in their heads. These are people who are genuinely sick, genuinely suffering. Often, they've been suffering for years. Doctors treat them very skeptically, especially if they have a disorder that has no obvious organic cause, it's just symptoms. So this battle to be believed about what's happening in your body can of course send people online in search of anybody who does believe them. Social media is primarily focused on awareness raising when it comes to individual spoonie influencers but also when it comes to patient foundations their sort of public-facing persona is not so focused on things like pursuing innovative therapies or pushing for a cure because what plays well on social media oftentimes is misery. What goes viral is the unhappy patient who's struggling. It's just not as sexy and it doesn't get as much traction to put this other stuff out there. Everybody in these communities I think would desperately love to get better but to have one of these chronic illnesses is to suffer such a terrible cycle of getting your hopes up and then being disappointed. They're constantly cycling through different treatments, constantly looking for something that works and it's really easy after going through that for months, for years, you know, for 10 years to become really downtrodden. At some point people do just give up hope because it's too painful to keep getting their hopes up and then having their hopes dashed. Kelly is a sort of a fascinating dissident voice within the chronic illness community. When you're so focused on awareness raising as your main ethos making people who have the disease visible rather than making them better, there's always an economy built around the idea of people being sick and staying sick and not getting better.