Yet long COVID is a substantial and ongoing crisis-one that affects millions of people. “There’s a shift from ‘Is it real?’ to ‘It is real, but …,’” Lekshmi Santhosh, the medical director of a long-COVID clinic at UC San Francisco, told me. This line of thinking points to the absence of disability claims, the inconsistency of biochemical signatures, and the relatively small proportion of severe cases as evidence that long COVID has been overblown. And what was once outright denial of long COVID’s existence has morphed into something subtler: a creeping conviction, seeded by academics and journalists and now common on social media, that long COVID is less common and severe than it has been portrayed-a tragedy for a small group of very sick people, but not a cause for societal concern. Most Americans simply aren’t thinking about COVID with the same acuity they once did the White House long ago zeroed in on hospitalizations and deaths as the measures to worry most about. For these reasons, many people don’t realize just how sick millions of Americans are-and the invisibility created by long COVID’s symptoms is being quickly compounded by our attitude toward them. And although milder cases allow patients to appear normal on some days, they extract their price later, in private. At its worst, it can leave people bed- or housebound, disconnected from the world. Its bewilderingly diverse symptoms are hard to see and measure. Almost every aspect of long COVID serves to mask its reality from public view. I’ve heard similar sentiments from many of the dozens of long-haulers I’ve talked with, and the hundreds more I’ve heard from, since first reporting on long COVID in June 2020. “They’ll try to hide it for as long as possible.” ![]() “People see very little benefit in talking about this condition publicly,” he told me. Some are unwilling to go public, because they fear the stigma and disbelief that have dogged long COVID. 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. Like many long-haulers, McCone is duct-taping himself together to live a life-and few see the tape. ![]() “It’s hell, but I have no choice,” he said. He can work at his computer for an hour a day. He can leave the house to go to medical appointments, but normally struggles to walk around the block. “I can appear completely fine for two hours a day,” he said. ![]() But when I spoke with him on the phone, he seemed cogent and lively. 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. ET on April 21, 2023Ĭharlie McCone has been struggling with the symptoms of long COVID since he was first infected, in March 2020. To hear more audio stories, download the hark app.
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