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.”

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. Almost every aspect of long COVID serves to mask its reality from public view. Its bewilderingly diverse symptoms are hard to see and measure. At its worst, it can leave people bed- or housebound, disconnected from the world. And although milder cases allow patients to appear normal on some days, they extract their price later, in private. 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.

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. 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. 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. “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.