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The disease’s “long-haulers” have endured relentless waves of debilitating symptoms—and disbelief from doctors and friends.
For Vonny Leclerc, day one was March 16.
Hours after British Prime Minister Boris Johnson instated stringent social-distancing measures to halt the SARS-CoV-2 coronavirus, LeClerc, a Glasgow-based journalist, arrived home feeling shivery and flushed. Over the next few days, she developed a cough, chest pain, aching joints, and a prickling sensation on her skin. After a week of bed rest, she started improving. But on day 12, every old symptom returned, amplified and with reinforcements: She spiked an intermittent fever, lost her sense of taste and smell, and struggled to breathe.
When I spoke with LeClerc on day 66, she was still experiencing waves of symptoms. “Before this, I was a fit, healthy 32-year-old,” she said. “Now I’ve been reduced to not being able to stand up in the shower without feeling fatigued. I’ve tried going to the supermarket and I’m in bed for days afterwards. It’s like nothing I’ve ever experienced before.” Despite her best efforts, LeClerc has not been able to get a test, but “every doctor I’ve spoken to says there’s no shadow of a doubt that this has been COVID,” she said. Today is day 80.
COVID-19 has existed for less than six months, and it is easy to forget how little we know about it. The standard view is that a minority of infected people, who are typically elderly or have preexisting health problems, end up in critical care, requiring oxygen or a ventilator. About 80 percent of infections, according to the World Health Organization, “are mild or asymptomatic,” and patients recover after two weeks, on average. Yet support groups on Slack and Facebook host thousands of people like LeClerc, who say they have been wrestling with serious COVID-19 symptoms for at least a month, if not two or three. Some call themselves “long-termers” or “long-haulers.”
Even though the world is consumed by concern over COVID-19, the long-haulers have been largely left out of the narrative and excluded from the figures that define the pandemic. I can pull up an online dashboard that reveals the numbers of confirmed cases, hospitalizations, deaths, and recoveries—but LeClerc falls into none of those categories. She and others are trapped in a statistical limbo, uncounted and thus overlooked.
Some have been diagnosed through tests, while others, like LeClerc, have been told by their doctors that they almost certainly have COVID-19. Still, many long-haulers have faced disbelief from friends and medical professionals because they don’t conform to the typical profile of the disease. People have questioned how they could possibly be so sick for so long, or whether they’re just stressed or anxious. “It feels like no one understands,” said Chloe Kaplan from Washington, D.C., who works in education and is on day 78. “I don’t think people are aware of the middle ground, where it knocks you off your feet for weeks, and you neither die nor have a mild case.”
The notion that most cases are mild and brief bolsters the belief that only the sick and elderly need isolate themselves, and that everyone else can get infected and be done with it. “It establishes a framework in which ‘not hiding’ from the disease looks a manageable and sensible undertaking,” writes Felicity Callard, a geographer at the University of Glasgow, who is on day 77. As the pandemic discourse turns to talk of a second wave, long-haulers who are still grappling with the consequences of the first wave are frustrated. “I’ve been very concerned by friends and family who just aren’t taking this seriously because they think you’re either asymptomatic or dead,” said Hannah Davis, an artist from New York City, who is on day 71. “This middle ground has been hellish.”
It “has been like nothing else on Earth,” said Paul Garner, who has previously endured dengue fever and malaria, and is currently on day 77 of COVID-19. Garner, an infectious-diseases professor at the Liverpool School of Tropical Medicine, leads a renowned organization that reviews scientific evidence on preventing and treating infections. He tested negative on day 63. He had waited to get a COVID-19 test partly to preserve them for health-care workers, and partly because, at one point, he thought he was going to die. “I knew I had the disease; it couldn’t have been anything else,” he told me. I asked him why he thought his symptoms had persisted. "I honestly don’t know," he said. "I don’t understand what’s happening in my body."
On March 17, a day after LeClerc came down with her first symptoms, SARS-CoV-2 sent Fiona Lowenstein to the hospital. Nine days later, after she was discharged, she started a Slack support group for people struggling with the disease. The group, which is affiliated with a wellness organization founded by Lowenstein called Body Politic, has been a haven for long-haulers. One channel for people whose symptoms have lasted longer than 30 days has more than 3,700 members.
“The group was a savior for me,” said Gina Assaf, a design consultant in Washington, D.C., who is now on day 77. She and other members with expertise in research and survey design have now sampled 640 people from the Body Politic group and beyond. Their report is neither representative nor peer-reviewed, but it provides a valuable snapshot of the long-hauler experience.
Of those surveyed, about three in five are between the ages of 30 and 49. About 56 percent have not been hospitalized, while another 38 percent have visited the ER but were not admitted. About a quarter have tested positive for COVID-19 and almost half have never been tested at all. Some became sick in mid-March, when their home countries were severely short on tests. (Most survey respondents live in the U.S. and the U.K.) Others were denied testing because their symptoms didn’t match the standard set. Angela Meriquez Vázquez, a children’s activist in Los Angeles, had gastrointestinal problems and lost her sense of smell, but because she didn’t have a cough and her fever hadn’t topped 100 degrees Fahrenheit, she didn’t meet L.A.’s testing criteria. By the time those criteria were loosened, Vázquez was on day 14. She got a test, and it came back negative. (She is now on day 69.)
A quarter of respondents in the Body Politic survey have tested negative, but that doesn’t mean they don’t have COVID-19. Diagnostic tests for SARS-CoV-2 miss infections up to 30 percent of the time, and these false negatives become more likely a week after a patient’s first symptoms appear. In the Body Politic survey, respondents with negative test results were tested a week after those with positive ones, on average, but the groups did not differ in their incidence of 60 different symptoms over time. Those matching patterns strongly suggest that those with negative tests are indeed dealing with the same disease. They also suggest that the true scope of the pandemic has been underestimated, not just because of the widespread lack of testing but because many people who are getting tested are receiving false negatives.
As many people reported “brain fogs” and concentration challenges as coughs or fevers. Some have experienced hallucinations, delirium, short-term memory loss, or strange vibrating sensations when they touch surfaces. Others are likely having problems with their sympathetic nervous system, which controls unconscious processes like heartbeats and breathing: They’ll be out of breath even when their oxygen level is normal, or experience what feel like heart attacks even though EKG readings and chest X-rays are clear. These symptoms wax, wane, and warp over time. “It really is a grab bag,” said Davis, who is a co-author of the Body Politic survey. “Every day you wake up and you might have a different symptom.”
It’s not clear why this happens. Akiko Iwasaki, an immunologist at Yale, offers three possibilities. Long-haulers might still harbor infectious virus in some reservoir organ, which is missed by tests that use nasal swabs. Or persistent fragments of viral genes, though not infectious, may still be triggering a violent immune overreaction, as if “you’re reacting to a ghost of a virus,” Iwasaki says. More likely, the virus is gone but the immune system, having been provoked by it, is stuck in a lingering overactive state.
It’s hard to distinguish between these hypotheses, because SARS-CoV-2 is new and because the aftermath of viral infections is poorly understood. Many diseases cause long-lasting symptoms, but these might go unnoticed as trends unless epidemics are especially large. “Nearly every single person with Ebola has some long-term chronic complication, from subtle to obviously debilitating,” says Craig Spencer of the Columbia University Medical Center, who caught the virus himself in 2014. Some of those persistent problems had been noted during early Ebola outbreaks, but weren’t widely appreciated until 28,600 people were infected in West Africa from 2013 to 2016.
The sheer scale of the COVID-19 pandemic, which reached more than 6 million confirmed cases worldwide in a matter of months, means that long-haulers are now finding one another in sufficient numbers to shape their own narrative.
As the pandemic continues, long-haulers are navigating a landscape of uncertainty and fear with a map whose landmarks don’t reflect their surroundings. If your symptoms last for longer than two weeks, for how long should you expect to be sick? If they differ from the official list, how do you know which ones are important? “I’m acutely aware of my body at all times of the day,” LeClerc told me. “It shrinks your entire world to an almost reptilian response to your surroundings.”
If you’re still symptomatic, could you conceivably infect someone else if you leave your home? Garner, the infectious disease expert, is confident that this far out, he’s not shedding live virus anymore. But Meg Hamilton, who is a nursing student in Odenton, Maryland—and, full disclosure, my sister-in-law—said that her local health department considered her to be contagious as long as she had a fever; she is on day 56, and has only had a few normal temperature readings. Davis said that she and her partner, who live in different apartments, talked through the risks and decided to reunite on day 59. Until then, she had been dealing with two months of COVID-19 alone.
The isolation of the pandemic has been hard enough for many healthy people. But it has exacerbated the foggy minds, intense fatigue, and perpetual fear of erratic symptoms that long-haulers are also dealing with. “It plays with your head, man,” Garner said. Some feel guilt over being incapacitated even though their cases are “mild.” Some start doubting or blaming themselves. In her fourth week of fever, Hamilton began obsessively worrying that she had been using her thermometer incorrectly. “I also felt like I wasn’t being mentally strong enough, and by allowing myself to say that I don’t feel good, I was prolonging the fever,” she said.
Then there’s the matter of who to tell—and when. At first, Hamilton kept the news from her parents. She didn’t want them to worry, and she assumed she’d be better in two weeks. But as two weeks became three, then four, then five, the omission started feeling like an outright lie. Her concern that they would be worried morphed into concern that they would be mad. (She finally told them last week; they took it well.)
Other long-haulers have been frustrated by their friends’ and families’ inability to process a prolonged illness. “People know how to react to you having it or to you getting better,” LeClerc said. But when symptoms are rolling instead of abating, “people don’t have a response they can reach for.” They ask if she’s improving, in expectation that the answer is yes. When the answer is instead a list of ever-changing symptoms, they stop asking. Others pivot to disbelief. “I’ve had messages saying this is all in your head, or it’s anxiety,” LeClerc said.
Many such messages come from doctors and nurses. Davis described her memory loss and brain fog to a neurologist, who told her she had ADHD. “You feel really scared: These are people you’re trying to get serious help from, and they don’t even understand your reality,” she said. Vázquez said her physicians repeatedly told her she was just having panic attacks—but she knows herself well enough to discount that. “My anxiety is thought-based,” but with COVID-19, “the physical symptoms happen first,” she said.
Athena Akrami, a neuroscience professor at University College London, said two doctors suggested that she was stressed, while a fellow neuroscientist told her to calm down and take antidepressants. “I’m a very calm person, and something is wrong in my body,” said Akrami, who is now on day 79, and is also a co-author on the Body Politic survey. “As a scientist, I understand there are so many unknowns about the virus, but as a patient, I need acknowledgment.” Every day, Akrami said, “is like being in a tunnel.”
To be sure, many health-care workers are also exhausted, having spent several months fighting a new disease that they barely understand, without enough masks and other protective supplies. But well before the pandemic, the health-care profession had a long history of medical gaslighting—downplaying a patient’s physical suffering as being all in their head, or caused by stress or anxiety. Such dismissals particularly affect women, who are “less likely to be perceived as credible witnesses to our own experiences,” said LeClerc. And they’re especially common when women have subjective symptoms like pain or fatigue, as most long-haulers do. When Garner wrote about those same symptoms for the British Medical Journal’s blog, “I had an unbelievable feeling of relief,” Callard, the geographer, told me. “Since he’s a guy and a professor of infectious disease, he has the kind of epistemic authority that will be harder to discount.”
Ramey can empathize with long-haulers. In her memoir, The Lady’s Handbook for Her Mysterious Illness, she writes about her 17-year ordeal of excruciating pain, crushing fatigue, gastro-catastrophes, and medical gaslighting. “Being isolated and homebound, incredible economic insecurity, the government not doing enough, testing not being up to snuff—all of that is the lived experience of someone like me for decades,” she says. “The illness itself is horrible and ravaging, but being told you’ve made it up, over and over again, is by far the worst of it.”
Formally, Ramey has myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and complex regional pain syndrome. Informally, she’s part of a group she has dubbed WOMIs—women with mysterious illnesses. Such conditions include ME/CFS, fibromyalgia, and postural orthostatic tachycardia syndrome. They disproportionately affect women; have unclear causes, complex but debilitating symptoms, and no treatments; and are hard to diagnose and easy to dismiss. According to the Institute of Medicine, 836,000 to 2.5 million people in the U.S. alone have ME/CFS. Between 84 and 91 percent are undiagnosed.
That clusters of ME/CFS have followed many infectious outbreaks is noteworthy. In such events, some people get better quickly, others are sick for longer with postviral fatigue, and still others are suffering months or years later. In one Australian study, 11 percent of people infected with Ross River virus, Epstein-Barr virus, or the bacterium behind Q fever were diagnosed with ME/CFS after six months. In a study of 233 Hong Kong residents who survived the SARS epidemic of 2003, about 40 percent had chronic-fatigue problems after three years or so, and 27 percent met the CDC’s criteria for ME/CFS. Many different acute pathogens seem to trigger the same inflammatory responses that culminate in the same chronic endgame. Many individuals in this community are worried about COVID-19, according to Ramey: “You’ve got this highly infectious virus sweeping around the world, and it would be unusual if you didn’t see a big uptick in ME/CFS cases.”
ME/CFS is typically diagnosed when symptoms persist for six months or more, and the new coronavirus has barely been infecting humans for that long. Still, many of the long-haulers’ symptoms “sound exactly like those that patients in our community experience,” says Jennifer Brea, the executive director of the advocacy group #MEAction.
LeClerc, Akrami, and others have noted that their symptoms reappear when they try to regain a measure of agency by cleaning, working out, or even doing yoga. This is post-exertional malaise—the defining feature of ME/CFS. It’s a severe multi-organ crash that follows activity as light as a short walk. It’s also distinct from mere exhaustion: You can’t just push through it, and you’ll feel much worse if you try. The ME/CFS community has learned that resting as much as possible in the early months of postviral fatigue is crucial. Garner learned that lesson the hard way. After writing that “my disease has lifted,” he did a high-intensity workout, and was bedridden for three days. He is now reading literature about ME/CFS and listening to his sister, who has had the disease. “We have much to learn from that community,” he says.
The symptoms of ME/CFS have long been trivialized; its patients disbelieved; its researchers underfunded. The condition is especially underdiagnosed among black and brown communities, who are also disproportionately likely to be infected and killed by COVID-19. If the pandemic creates a large population of people who have symptoms that are similar to those of ME/CFS, it might trigger research into this and other overlooked diseases. Several teams of scientists are already planning studies of COVID-19 patients to see if any become ME/CFS patients—and why. Brea says she would welcome such a development. But she also feels “a lot of grief for people who may have to walk that path, [and] grief for the time we could have spent over the last four decades researching this so we’d have a better understanding of how to treat patients now.”
Some long-haulers will get better. The Body Politic Slack support group has a victories channel, where people post about promising moments on the road to recovery. Such stories were scarce last month, but more have appeared in the past weeks. The celebrations are always tentative, though. Good days are intermingled with terrible ones. “It’s a reverse-circling of the drain,” Vázquez said. “It has gotten better, but I track that trajectory in weeks, not days.” The COVID-19 dashboard from Johns Hopkins shows that about 2.7 million people around the world have “recovered” from the disease. But recovery is not a simple matter of flipping a switch. For some, it will take more time than the entire duration of the pandemic thus far.
Some survivors will have scar tissue from the coronavirus’s assault on their lungs. Some will still be weak after lengthy stays in ICUs or on ventilators. Some will eventually be diagnosed with ME/CFS. Whatever the case, as the pandemic progresses, the number of people with medium-to-long-term disabilities will increase. “Some science fiction—and more than a few tech bros—have led us to believe in a nondisabled future,” says Ashley Shew of Virginia Tech, who studies the intersection between technology and disability. “But whether through environmental catastrophe, or new viruses, we can expect more, exacerbated, and new disabilities.”
In the early 1950s, polio permanently disabled tens of thousands of people in the U.S. every year, most of whom were children or teenagers who “saw their futures as able and healthy,” Shew says. In the ’60s and ’70s, those survivors became pioneers of the disability-rights movement in the U.S.
Perhaps COVID-19 will similarly galvanize an even larger survivor cohort. Perhaps, collectively, they can push for a better understanding of neglected chronic diseases, and an acceptance of truths that the existing disability community have long known. That health and sickness are not binary. That medicine is as much about listening to patients’ subjective experiences as it is about analyzing their organs. That being a survivor is something you must also survive.
Ed Yong is a staff writer at The Atlantic, where he covers science.