Long COVID Began with “Something’s Still Not Right” Private messages became public grief, then public science. Abby Nov 02, 2025 People started whispering into feeds and group chats in spring 2020: “I’m not shaking this.” “My brain won’t settle.” “The fatigue is different.” They didn’t wait for an echo from a lab. They named their condition in real time, using the tools they had (hashtags, Facebook groups, Reddit threads) and in the process turned their private experience into a shared language. That’s where the term Long COVID came from. Not a headline, not a medical journal, but people trying to make their own reality legible. That origin matters because it tells us something essential about illness and authority. We often treat lived experience as the thing to be explained rather than the starting point and grant legitimacy only after a study, a funding stream, or a guideline validates what people have been saying for months or years. Long COVID has flipped the script, and the fallout has been instructive, uncomfortable, and clarifying.