Online communities have made their diagnoses their identity.
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Those who are sick and extremely online look for a community that understands them—one that accepts them and their various diseases. These individuals are referred to as "spoonies" online, a term that comes from a 2003 blog post by Christine Miserandino. In many cases, spoonies have been sick for a very long time. And since their identity revolves around their sickness, it's hard for them to imagine a world in which they are cured.
"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," writes novelist and culture critic Kat Rosenfield in her recent article for Reason.
Spoonies have illnesses ranging from Crohn's to lupus to chronic Lyme disease to even long COVID-19. But learning to live with their symptoms, and not actively seeking out a cure, can be a trap.
"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," says Rosenfield.
Produced by Natalie Dowzicky; edited by Regan Taylor; graphics by Isaac Reese, Danielle Thompson, and Nathalie Walker.
Photo Credits: Hellerhoff, CC BY-SA 4.0, via Wikimedia Commons; Envato Elements.
Music Credits: "Rebreather," by Javapsych via Artlist; "Split Soul," by Dan Mayo via Artlist; "Mono No Aware," by Sun Wash via Artlist.
