Conflicts around clinical storytelling are a longstanding feature of contested illness, with stakes that include therapeutic interventions both appropriate and inappropriate, administered or withheld. Those conflicts, which until now have mostly taken place behind closed doors, are now playing out in public. For critics of medical paternalism, social media has helped amplify voices long confined to the margins.
Diagnostic uncertainty aside, I am reliably charmed when patients on chronic illness TikTok start dancing. I appreciate their interest in casting off oppressive clinical frameworks while at the same time adhering to the constraints of trending choreography. I like the pluck of declaring a body profoundly dysfunctional while moving it artfully and for strictly recreational purposes.
We know that these are the correct diagnoses because the patient tells us so. Her 14-second video invokes and then rejects the figure of the doubting physician who might tempt us into thinking otherwise. Profile pages are home turf, at least as compared with the doctor’s office . Encountering illness narratives online reinforces my status as a visitor, wandering through someone else’s rooms, my understanding contingent on an idiosyncratic context, or whatever scraps of it I’m provided.
If the analogy to a home visit holds, does chronic illness TikTok then work as medical education? Has occasional lurking humbled my practice in any meaningful way? Recognizing that these videos aren’t seeking my assessment, it’s surprisingly difficult to stop myself from forming one. One of the most hurtful things you can say to a patient with chronic illness is that their symptoms aren’t real.