Covid long haulers describe the devastating aftereffects of the disease
The damage caused by the virus can be brutal. And the burden of care will weigh on countries for years to come
Eight months and more than 50 million documented cases into the pandemic, there's still much we don't understand about SARS-CoV-2. We do know that the majority of those infected with the novel coronavirus display no or mild symptoms. Worryingly, a not-insignificant portion of the 20 million people globally who've recovered suffer lingering effects, including lung, heart, and nervous system impairment.
Researchers are collecting patient data to determine the duration and depth of the health consequences. Meantime, post–Covid-19 clinics are opening to cater to an expanding population of so-called long haulers (survivors left with scarred lungs, chronic heart damage, post-viral fatigue, and other persistent, debilitating conditions), a sign that enduring disability will perhaps weigh on health systems and the labor force long after a vaccine becomes widely available.
The phenomenon of what's known as "long Covid" isn't unique; postviral syndromes occur after many infections, including with the common cold, influenza, and Epstein-Barr. What's novel about SARS-CoV-2 is the broad spectrum of symptoms that are being reported and the duration of months, not weeks. The long-term, multiorgan effects may prolong the pandemic's economic legacy, adding to its unprecedented global cost—predicted by Australian National University scholars to reach as much as $35.3 trillion through 2025.
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"Because Covid-19 is a new disease, much about the clinical course remains uncertain—in particular, the possible long-term health consequences, if any," Carlos del Rio, executive associate dean at Emory University School of Medicine, and colleagues wrote in an Oct. 5 paper in the Journal of the American Medical Association that reviewed its persistent effects. Multidisciplinary care and thoughtfully integrated research are needed "to mitigate the adverse physical and mental health effects among hundreds of thousands, if not millions, of people who recover from Covid-19," the report said.
Although it's unclear how many Covid survivors become long haulers, a study under way in the UK with more than 4 million participants has found that 1 in 10 people is sick for at least four weeks. Surprisingly, people with mild cases of the disease are more likely to have a variety of "strange" symptoms that come and go over a longer period, according to Tim Spector, professor of genetic epidemiology at King's College London, who's leading the study.
King's College researchers say their data suggest that, of those affected by the first wave of the virus in the UK, 300,000 people would have had Covid symptoms for a month and 60,000 for three months or more. "This is the other side of Covid: the long haulers that could turn out to be a bigger public-health problem than excess deaths from Covid-19, which mainly affect the susceptible elderly," Spector wrote in the foreword of an October 5 report about the phenomenon for the Tony Blair Institute for Global Change.
The dearth of patient follow-up and incomplete data on the number of people afflicted by Covid-19 make it difficult to predict the pandemic's long-term health and economic consequences, says Christopher Murray, director of the Institute for Health Metrics and Evaluation at the University of Washington in Seattle. Murray, who plans to study the impact of post-Covid disease as part of the global burden of disease research he's been conducting for almost 30 years, says there's already enough information to suggest "it's appreciable."
That information will be critical for anticipating and funding future health-care needs, says Thomas File Jr., president of the Infectious Diseases Society of America, who predicts the pandemic will leave "a significant burden on our health-care system for years to come."
The economic impact will be much greater if younger survivors endure decades of coronavirus-related disability, says Olga Jonas, a former economic adviser at the World Bank who studies the impact of contagions at Harvard. Polio would have led to an estimated $215 billion in treatment costs in the US from 1955 to 2015 had vaccines not become widely available, a 2006 study found.
There's been little recognition so far of Covid-19's ill effects on younger adults, says Hannah Wei, a 30-year-old long hauler in Canada, who helps conduct research on the disease for Body Politic, an online Covid survivor support group. An analysis of responses from 640 patients collected by the group, which includes scientists, in April and May found "recovery is volatile, includes relapses, and can take six or more weeks."
Although all respondents experienced symptoms consistent with Covid-19, 48% were either denied testing or not tested for another reason. That can make obtaining financial assistance for rehabilitation and disability services more difficult, says Wei, who found people her age weren't diagnosed early in the pandemic, when scarce testing resources were prioritized for older patients with typically more serious illness.
In recent months, studies have shown younger patients may not only sustain organ damage, but also be oblivious to the need to take steps to prevent further harm. A small study in September found signs of myocarditis, a potentially fatal inflammation of the heart muscle, in 4 of 26 college sports athletes, including in 2 whose coronavirus infection caused no obvious symptoms.
Even if cases of long Covid are identified, there's still no guarantee the economic consequences will be adequately quantified, says Janet Currie, an economics professor at Princeton, noting that employment surveys favored by economists don't routinely ask if people have disabilities.
In the following pages, you will hear from Wei and five other long haulers about what it's been like to live with this mystifying condition. Interviews have been edited for length and clarity. —With Suzi Ring and Lisa Du
Jenny, 45
Oxford, England
The primary school teacher didn't have the luxury of working from home when the UK went into lockdown in March. Jenny, who asked that her full name not be published because it might affect her employment prospects, didn't take much notice when she began experiencing flu-like symptoms in April, thinking she was just run-down from her job. Seven months later the mother of three has quit teaching and is still battling to feel normal.
In early May they sent me to the hospital to get a chest X-ray. I could hear all these people in the ward saying, "I'm on Week 8, I'm on Week 9." I was on Week 6 at that point. Into June it felt like the symptoms were almost coming in waves and having a little cycle through. So I might have a week of a really, really sore throat, or a week of a killer headache. Slowly I started to feel a bit stronger. I was awake longer and functioning in the morning, getting the kids doing home-schooling. But then I would just crash after lunch. My youngest child spent hours and hours building Lego and watching TV. It was particularly hard in the middle of lockdown because it felt like all your support networks were taken away. Normally if you're ill, your friend might say, "Oh, I'll pick your child up from school, and they can come round for a play." Or my mum would have said, "They could come to mine for a sleepover." But all of that was gone. Obviously it's a difficult time not to be in work, but I just thought, "I've got to give my body a chance to recover." Teaching is a very physical job. If I was teaching now, I'd be on my feet and using my lungs all day. My main symptom now is this pain in my chest, and it's really tiring. I just don't know what it is, and no one else does, either." (Following this interview, Jenny learned the disease has impaired her heart function). —As told to Suzi Ring
Mario Escobar, 53
Bogotá
The chief of internal medicine at one of Bogotá's main hospitals, Dr. Escobar tested positive for Covid-19 in early July. His condition improved quickly, but he relapsed soon after returning to work. Tests revealed he'd developed life-threatening blood clots in his lungs and leg.
I knew what to expect. In the great majority of cases it starts off with minor symptoms, and toward the end of the first week the symptoms worsen. And that's exactly what happened to me. After the 11th day, I started to feel better. I completed the 14 days of isolation and returned to work. If you ask me if I felt sick, I didn't, but things weren't completely normal. At the hospital, when taking the stairs, I noticed it took more effort. And when I got back on my bike, it was much harder to ride uphill. A few days after that, symptoms started to reappear. I began sneezing and had a more frequent and stronger cough. My oxygen levels were again falling, so I was sent back home on Sept. 9, this time with oxygen day and night.
I wasn't seeing any improvement, so I went back to the hospital on Sept. 15 to run more tests. We found deep vein thrombosis on my right leg and embolisms in both lungs. Looking back, all those cough episodes and difficulty breathing were the pulmonary embolisms happening. I started taking blood thinners and rapidly started to see an improvement. Within a few days my blood oxygen saturation levels started to rise, and then the cough went away.
Fortunately, through it all, I've been able to work remotely. I've remained mentally active, which has been essential. The way you confront this disease also matters a lot. As someone who's been meditating regularly for years now, I don't obsess over what will happen in three months. I always tell my daughter, "Today is the best day of your life." Right now I'm focused on a full recovery. —As told to Andrea Jaramillo
Hannah Wei, 30
Ottawa
Wei, who works in product design, was diagnosed with Covid‑19 in March after returning from a trip to Asia, where she typically spends part of the year. Her condition has improved, but the mixed martial arts practitioner says an inability to exercise like she used to has left a big hole in her identity.
It did a number on my airways. Around Day 10 to 14 my lungs were really hurting. I could feel them. You don't really think about feeling your lungs, usually, but gosh. It felt like I had just run a marathon—you know, that feeling when you're out of air. When it got a bit warmer my lungs felt better. I feel like that's when I was showing a typical long-hauler set of symptoms: more fatigue, occasional shortness of breath, brain fog. That's when the neurological symptoms really bite back. It's just like a different set of symptoms—rashes, whatever—all the weird stuff came out.
I had been an athlete and still consider myself an athlete, so this whole process of trying to get better, trying to get my performance back, trying to reconcile my identity as an athlete and performer is hard. It's quite difficult to imagine all these people who used to do a lot of vigorous activities not being able to do that anymore. That has a huge impact on how we see ourselves. —As told to Suzi Ring
Stefania Giardoni, 50
Rome
Giardoni tested positive in early March and was admitted to the hospital, where her treatment included doses of hydroxychloroquine, a drug that's demonstrated to have little therapeutic value for Covid-19 patients and comes with serious side effects. Since being discharged in May, she's struggled to find regular work and been shunned by her neighbors.
From the time I left the hospital until a few weeks ago, my hair was falling out in clumps. I still have chest pains and hypertension. I think it's because of the hydroxychloroquine I was given at the hospital, because I never suffered from it before. I have memory lapses, like if I had early signs of Alzheimer's. Some weeks ago I was talking to my current partner like he was the father of my two sons. You start to be scared of that. You ask yourself, "How is that possible?" My sense of smell is distorted even after four months. It's hard for me to smell even bleach—it's like water for me. I struggle to smell garlic or onion. Coca-Cola tastes like petroleum. I can't recognize flavors—most foods have the same sweet taste. That's a pity, really, because I was such a good cook. Soon after I was discharged from the hospital, my neighbors accused me and my family of being irresponsible and of spreading the virus. Our car was damaged, and my adult sons were threatened by someone holding a car jack. I filed a complaint with the police but then withdrew it. I didn't want to start a useless war with them. Even today in my building, neighbors are afraid to meet me in the elevator. They lock the door when I pass by. I can't understand all this hate. It's a shame, because we had a good relationship before. —As told to Alberto Brambilla
Rahul Sahajpal, 33
New Delhi
Sahajpal's job as a manager at an outsourcing company requires him to be up at all hours of the night dealing with clients from around the world. That's made brain fog, one of the most persistent symptoms he's had to deal with since the start of his bout with coronavirus in early March, particularly onerous.
I was never tested, because one of the main criteria at the time was whether you had traveled internationally, or you had been in touch with a positive person. In April the symptoms shifted to less classic symptoms, like joint pain, digestive problems, dizziness, and rashes. I went to a cardiologist and a neurologist, but most of the doctors said, "It's just anxiety. You read too much. You think too much." Then gradually, by the end of April, things started to improve. Now it's been more than six months, but if I'm having a walk or I'm kind of doing any typical activity, I experience a sore throat and a stuffy nose—like a cold. And there are still sometimes pains in my chest, sometimes the left side, sometimes on the right side, on and off for a short time. I also get a lot of brain fogging. So I'm talking with you, and I forget what happens two minutes back. I'm in the outsourcing industry, and I have to work with multiple stakeholders across the globe. There are times when I just can't speak, I just can't recollect the words. It's a big embarrassment for me, and it's impacting my performance. Luckily, my employer has been very supportive. If the doctors are not sure, how can you expect people from the industry to be sure? But they've cooperated with me. Whenever I've needed holiday, they've provided me with holiday. And whenever I've needed leaves, they've allowed leaves. —As told to Ari Altstedter
Jake Elsas, 53
Atlanta
Elsas juggled three jobs and was active in his community until he fell sick in mid-March with what his doctors believe was Covid-19. Although the initial symptoms were mild, the disease has left him grappling with fatigue, brain fog, and worsened insomnia, forcing him to drastically cut back his work schedule.
My brain has a much harder time processing information. And when I do too much, it gets worse. Have you ever had so much to drink that when you lie down in bed at night, the room is spinning? "The spins," for people who know these things. Right now it's relatively mild. If I exert myself too much, the dizziness will increase. Like, even this conversation—over time, it's going to get harder and harder for me. Things that I would have considered simple tasks are so challenging now. It can take me two hours to write an email. I changed the litter box a couple of days ago. About halfway into what is maybe a 10- to 15-minute process, I was drenched in cold sweat, and my head was swimming. In the past I would typically sleep probably around seven hours. Now, I'm getting maybe four or five hours of sleep. I literally have not been rested through seven months. It's unpredictable—that's one of the biggest issues for me. I cannot be productive over a sustained period. I'm sure I wouldn't be able to do a full-time job.
There's just no way. I've had chest X-rays. I've had blood tests up the wazoo. Every infection that you could think of, they have tested me for. Now they're finally just starting to focus on my brain. This has impacted my mental health, no doubt about it. I have certainly felt moments of great self-pity, followed almost immediately by guilt. Accepting that this is my new normal is better for me than to think, "Oh, I'm going to get better." —As told to Emma Court
Disclaimer: This article first appeared on Bloomberg, and is published by special syndication arrangement
