Charlie McCone has been struggling with the symptoms of long COVID since he was first infected, in March 2020. Most of the time, he is stuck on his couch or in his bed, unable to stand for more than 10 minutes without fatigue, shortness of breath, and other symptoms flaring up. But when I spoke with him on the phone, he seemed cogent and lively. “I can appear completely fine for two hours a day,” he said. No one sees him in the other 22. He can leave the house to go to medical appointments, but normally struggles to walk around the block. He can work at his computer for an hour a day. “It’s hell, but I have no choice,” he said. Like many long-haulers, McCone is duct-taping himself together to live a life—and few see the tape.
McCone knows 12 people in his pre-pandemic circles who now also have long COVID, most of whom confided in him only because “I’ve posted about this for three years, multiple times a week, on Instagram, and they’ve seen me as a resource,” he said. Some are unwilling to go public, because they fear the stigma and disbelief that have dogged long COVID. “People see very little benefit in talking about this condition publicly,” he told me. “They’ll try to hide it for as long as possible.”