Long COVID Is Being Erased—Again

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.

Yet long COVID is a substantial and ongoing crisis—one that affects millions of people. However inconvenient that fact might be to the current “mission accomplished” rhetoric, the accumulated evidence, alongside the experience of long haulers, makes it clear that the coronavirus is still exacting a heavy societal toll.

As it stands, 11 percent of adults who’ve had COVID are currently experiencing symptoms that have lasted for at least three months, according to data collected by the Census Bureau and the CDC through the national Household Pulse Survey. That equates to more than 15 million long-haulers, or 6 percent of the U.S. adult population. And yet, “I run into people daily who say, ‘I don’t know anyone with long COVID,’” says Priya Duggal, an epidemiologist and a co-lead of the Johns Hopkins COVID Long Study. The implication is that the large survey numbers cannot be correct; given how many people have had COVID, we’d surely know if one in 10 of our contacts was persistently unwell.

But many factors make that unlikely. Information about COVID’s acute symptoms was plastered across our public spaces, but there was never an equivalent emphasis that even mild infections can lead to lasting and mercurial symptoms; as such, some people who have long COVID don’t even know what they have. This may be especially true for the low-income, rural, and minority groups that have borne the greatest risks of infection. Lisa McCorkell, a long-hauler who is part of the Patient-Led Research Collaborative, recently attended a virtual meeting of Bay Area community leaders, and “when I described what it is, some people in the chat said, ‘I just realized I might have it.’”

Admitting that you could have a life-altering and long-lasting condition, even to yourself, involves a seismic shift in identity, which some people are understandably loath to make. “Everyone I know got Omicron and got over it, so I really didn’t want to concede that I didn’t survive this successfully,” Jennifer Senior, a friend and fellow staff writer at The Atlantic, who has written about her experience with long COVID, told me. Duggal mentioned an acquaintance who, after a COVID reinfection, can no longer walk the quarter mile to pick her kids up from school, or cook them dinner. But she has turned down Duggal’s offer of an appointment; instead, she is moving across the country for a fresh start. “That is common: I won’t call it ‘long COVID’; I’ll just change everything in my life,” Duggal told me. People who accept the condition privately may still be silent about it publicly. “Disability is often a secret we keep,” Laura Mauldin, a sociologist who studies disability, told me. One in four Americans has a disability; one in 10 has diabetes; two in five have at least two chronic diseases. In a society where health issues are treated with intense privacy, these prevalence statistics, like the one-in-10 figure for long COVID, might also intuitively feel like overestimates.

Some long-haulers are scared to disclose their condition. They might feel ashamed for still being sick, or wary about hearing from yet another loved one or medical professional that there’s nothing wrong with them. Many long-haulers worry that they’ll be perceived as weak or needy, that their friends will stop seeing them, or that employers will treat them unfairly. Such fears are well founded: A British survey of almost 1,000 long-haulers found that 63 percent experienced overt discrimination because of their illness at least “sometimes,” and 34 percent sometimes regretted telling people that they have long COVID. “So many people in my life have reached out and said, ‘I’m experiencing this,’ but they’re not telling the rest of our friends,” McCorkell said.

Imagine that you interact with 50 people on a regular basis, all of whom got COVID. If 10 percent are long-haulers, that’s five people who are persistently sick. Some might not know what long COVID is or might be unwilling to confront it. The others might have every reason to hide their story. “Numbers like 10 percent are not going to naturally present themselves in front of you,” McCone told me. Instead, “you’ll hear from 45 people that they are completely fine.”

The same factors that stop people from being public about their condition—ignorance, denial, or concerns about stigma—also make them less likely to file for disability benefits. And that process is, to put it mildly, not easy. Applicants need thorough medical documentation; many long-haulers struggle to find doctors who believe their symptoms are real. Even with the right documents, applicants must hack their way through bureaucratic overgrowth, likely while fighting fatigue or brain fog. For these reasons, attempting to measure long COVID through disability claims is a profoundly flawed exercise. Even if people manage to apply, they face an average wait time of seven months and a two-in-three denial rate. McCone took six weeks to put an application together, and, despite having a lawyer and extensive medical documentation, was denied after one day. McCorkell knows many first-wavers—people who’ve had long COVID since March 2020—“who are just getting their approvals now.”

An alternative source of data comes from the Census Bureau’s Current Population Survey, which simply asks working-age Americans if they have any of six forms of disability. Using that data, Richard Deitz, an economics-research adviser at the Federal Research Bank of New York, calculated that about 1.7 million more people now say they do than in mid-2020, reversing a years-long decline. These numbers are lower than expected if one in 10 people who gets COVID really does become a long-hauler, but the survey doesn’t directly capture many of the condition’s most common symptoms, such as fatigue, neurological problems beyond brain fog, and post-exertional malaise, where a patient’s symptoms get dramatically worse after physical or mental exertion. About 900,000 of the newly disabled people are also still working. David Putrino, who leads a long-COVID rehabilitation clinic at Mount Sinai, told me that many of his patients are refused the accommodations required under the Americans With Disabilities Act. Their employers won’t allow them to work remotely or reduce their hours, because, he said, “you look at them and don’t see an obvious disability.”

Long COVID can also seem bafflingly invisible when people look at it with the wrong tools. For example, a 2022 study by National Institutes of Health researchers compared 104 long-haulers with 85 short-term COVID patients and 120 healthy people and found no differences in measures of heart or lung capacities, cognitive tests, or levels of common biomarkers—bloodstream chemicals that might indicate health problems. This study has been repeatedly used as evidence that long COVID might be fictitious or psychosomatic, but in an accompanying editorial, Akulo Hope, the medical director of Oregon Health and Science University’s long-COVID program, noted that the study exactly mirrors what long-haulers commonly experience: They undergo extensive testing that turns up little and are told, “Everything is normal and nothing is wrong.”

The better explanation, Putrino told me, is that “cookie-cutter testing” doesn’t work—a problem that long COVID shares with other neglected complex illnesses, such as myalgic encephalomyelitis/chronic-fatigue syndrome and dysautonomia. For example, the NIH study didn’t consider post-exertional malaise, a cardinal symptom of both ME/CFS and long COVID; measuring it requires performing cardiopulmonary tests on two successive days. Most long-haulers also show spiking heart rates when asked to simply stand against a wall for 10 minutes—a sign of problems with their autonomic nervous system. “These things are there if you know where to look,” Putrino told me. “You need to listen to your patients, hear where the virus is affecting them, and test accordingly.”

Contrary to popular belief, researchers have learned a huge amount about the biochemical basis of long COVID, and have identified several potential biomarkers for the disease. But because long COVID is likely a cluster of overlapping conditions, there might never be a singular blood test that “will tell you if you have long COVID 100 percent of the time,” Putrino said. The best way to grasp the scale of the condition, then, is still to ask people about their symptoms.

Large attempts to do this have been relatively consistent in their findings: The U.S. Household Pulse Survey estimates that one in 10 people who’ve had COVID currently have long COVID; a large Dutch study put that figure at one in eight. The former study also estimated that 6 percent of American adults are long-haulers; a similar British survey by the Office for National Statistics estimated that 3 percent of the general population is. These cases vary widely in severity, and about one in five long-haulers is barely affected by their symptoms—but the remaining majority very much is. Another one in four long-haulers (or 4 million Americans) has symptoms that severely limit their daily activities. The others might, at best, wake every day feeling as if they haven’t had any rest, or feel trapped in an endless hangover. They might work or socialize when their tidal symptoms ebb, but only by making big compromises: “If I work a full day, I can’t also then make dinner or parent without significant suffering,” JD Davids, who has both long COVID and ME/CFS, told me.

Some people do recover. A widely cited Israeli study of 1.9 million people used electronic medical records to show that most lingering COVID symptoms “are resolved within a year from diagnosis,” but such data fail to capture the many long-haulers who give up on the medical system precisely because they aren’t getting better or are done with being disbelieved. Other studies that track groups of long-haulers over time have found less rosy results. A French one found that 85 percent of people who had symptoms two months after their infection were still symptomatic after a year. A Scottish team found that 42 percent of its patients had only partially recovered at 18 months, and 6 percent had not recovered at all. The United Kingdom’s national survey shows that 69 percent of people with long COVID have been dealing with symptoms for at least a year, and 41 percent for at least two.

The most recent data from the U.S. and the U.K. show that the total number of long-haulers has decreased over the past six months, which certainly suggests that people recover in appreciable numbers. But there’s a catch: In the U.K., the number of people who have been sick for more than a year, or who are severely limited by their illness, has gone up. A persistent pool of people is still being pummeled by symptoms—and new long-haulers are still joining the pool. This influx should be slower than ever, because Omicron variants seem to carry a lower risk of triggering long COVID, while vaccines and the drug Paxlovid can lower that risk even further. But though the odds against getting long COVID are now better, more people are taking a gamble, because preventive precautions have been all but abandoned.

Even if prevalence estimates were a tenth as big, that would still mean more than 1 million Americans are dealing with a chronic illness that they didn’t have three years ago. “When long COVID first came on the scene, everyone told us that once we have the prevalence numbers, we can do something about it,” McCorkell told me. “We got those numbers. Now people say, ‘Well, we don’t believe them. Try again.’”

To a degree, I sympathize with some of the skepticism regarding long COVID, because the condition challenges our typical sense of what counts as solid evidence. Blood tests, electronic medical records, and disability claims all feel like rigorous lines of objective data. Their limitations become obvious only when you consider what the average long-hauler goes through—and those details are often cast aside because they are “anecdotal” and, by implication, unreliable. This attitude is backwards: The patients’ stories are the ground truth against which all other data must be understood. Gaps between the data and the stories don’t immediately invalidate the latter; they just as likely show the holes in the former.

Laura Mauldin, the disability sociologist, argues that the U.S. is primed to discount those experiences because the country’s values—exceptionalism, strength, self-reliance—have created what she calls the myth of the able-bodied public. “We cannot accept that our bodies are fallible, or that disability is utterly ordinary and expected,” she told me. “We go to great pains to pretend as though that is not the case.” If we believe that a disabling illness like long COVID is rare or mild, “we protect ourselves from having to look at it.” And looking away is that much easier because chronic illnesses like long COVID are more likely to affect women—“who are more likely to have their symptoms attributed to psychological problems,” Mauldin said—and because the American emphasis on work ethic devalues people who can’t work as much or as hard as their peers.

Other aspects of long COVID make it hard to grasp. Like other similar, neglected chronic illnesses, it defies a simplistic model of infectious disease in which a pathogen causes a predictable set of easily defined symptoms that alleviate when the bug is destroyed. It challenges our belief in our institutions, because truly contending with what long-haulers go through means acknowledging how poorly the health-care system treats chronically ill patients, how inaccessible social support is to them, and how many callous indignities they suffer at the hands of even those closest to them. Long COVID is a mirror on our society, and the image it reflects is deeply unflattering.

Most of all, long COVID is a huge impediment to the normalization of COVID. It’s an insistent indicator that the pandemic is not actually over; that policies allowing the coronavirus to spread freely still carry a cost; that improvements such as better indoor ventilation are still wanting; that the public emergency may have been lifted but an emergency still exists; and that millions cannot return to pre-pandemic life. “Everyone wants to say goodbye to COVID,” Duggal told me, “and if long COVID keeps existing and people keep talking about it, COVID doesn’t go away.” The people who still live with COVID are being ignored so that everyone else can live with ignoring it.