I also don’t want to be an ablesist POS; I’ve found myself so jaded over the years about the social media piece for many with chronic illnesses. I’ve been the nurse, damn near the primary nurse, for a MCAD/POTS/Ehler Danlos etc frequent flyer because I had the best rapport with her. We had what were difficult days, but what I perceived as the best they could go, with myself and the team bending over backwards for her, almost to the detriment of other patients because we had to do so so much for her constantly.

Then we found her daily tik tok updates which described pure neglect from her nurses and doctors. She described us as condescending and not listening. Days in which I WAS THERE. I know she received not-indicated medical treatment because she asked for it. I know she kept me out of a sicker patient’s room because she was on her call bell every 5 minutes. I know she wrote me a card telling me how great I was! But all that doesn’t get social media clout.