In May 2020, Courtney Dunlop, 40, called her doctor to report what she thought were pneumonia symptoms: muscles aches, fatigue, coughing fits, and unbearable chest pain. It turns out that she had COVID-19. Eight months after visiting the drive-up testing site in her hometown of Springfield, Missouri, Dunlop says her coughing has subsided and she can finally walk without becoming winded. Despite these improvements, Dunlop is still severely fatigued and frequently needs to take a midday nap. Most days, she can’t tell if the heaviness in her chest and her racing heart are still symptoms from COVID-19, or if she is feeling an unrelated symptom of anxiety every day. She guesses that it’s a perfect storm of both.
The novel coronavirus has been riddled with mystery since the World Health Organization declared the SARS-CoV-2 outbreak a global pandemic more than 10 months ago. One ongoing puzzle is why people like Dunlop get COVID-19 and experience symptoms—like unrelenting fatigue, breathing difficulties, and hair loss—months after the infection has cleared their bodies. Some people maintain their COVID-19 symptoms well after they have supposedly recovered from the acute infection. Other individuals develop new symptoms like brain fog that they didn’t experience when they were sick with COVID-19. Experts are still looking into why all of this happens.
People who experience this phenomenon of unrelenting symptoms are often called COVID-19 “long-haulers,” but medical experts refer to the condition with technical terms like post-acute COVID-19 syndrome, David Putrino, Ph.D., director of rehabilitation innovation for the Mount Sinai Health System and an assistant professor of rehabilitation medicine at the Icahn School of Medicine at Mount Sinai, explains. “What we’re seeing is this looks a lot like other post-viral syndromes that have occurred with SARS, swine flu, and even Ebola,” he tells SELF. “There are too many cases of post-acute COVID-19 syndrome to ignore. We have to put clear and effective management strategies into place or else this is going to follow us for quite some time,” he says.
Adding to the mystery, experts are still defining what post-acute COVID-19 entails, and more importantly, why the syndrome occurs. (A syndrome is the medical term for a bunch of symptoms that occur together without an understood mechanism.) Here’s what we know so far about COVID-19 long-hauler experiences and how experts are trying to help people regain their pre-coronavirus health.
How COVID-19 attacks the body
First, it’s helpful to understand why people can experience such vastly different symptoms when they all become sick with the same disease. “This is a respiratory virus and the primary symptoms people get tend to be respiratory in nature, so a stuffy nose, sore throat, and cough,” Amesh A. Adalja, M.D., infectious disease, critical care, and emergency medicine physician and senior scholar at the Johns Hopkins Center for Health Security, tells SELF.
But the virus can attack multiple body systems, which explains why some people with symptomatic coronavirus cases report other symptoms like nausea, vomiting, and diarrhea. “Most people get the respiratory effects, but it is a systemic infection, so some people get some of the other effects,” says Dr. Adalja.
Health experts know that older people or those with chronic medical conditions such as asthma are more likely to become severely sick if they contracted the virus. However, it’s unclear why some people with COVID-19 develop certain symptoms or are asymptomatic, according to Weill Cornell Medicine.
What we know about lingering symptoms
Most people who get sick with COVID-19 recover completely within a few weeks. But thousands of people report malaise months after their initial infection. It’s a big enough problem that post-COVID-19 care and rehabilitation centers have opened at hospitals around the country, including Mount Sinai, University of Texas Medical Branch in Galveston, and University of Washington Medicine in Seattle. These clinics are for people who were sick with COVID-19 and need ongoing care because of lingering symptoms. Patients may try a variety of treatments to hopefully regain some of their pre-COVID-19 health.
There are two different types of people who may require post-COVID-19 care, says Aaron E. Bunnell, M.D., assistant professor of rehabilitation medicine at the University of Washington School of Medicine. Dr. Bunnell works with patients at U.W.’s post-COVID-19 telehealth clinic. First are the patients who were critically ill from COVID-19 and might have experienced organ or nervous system damage, Dr. Bunnell says. “When people get really sick, everything in the body can break down. We think commonly about the kidneys, heart, and lungs, but every system can be affected,” he explains. When people become severely sick, like with COVID-19, their immune systems work overtime to fight off the virus. This leads to a cascade of inflammatory effects, or the cytokine storm, that experts believe could cause multi-organ damage with COVID-19. In other words, your body’s reaction to the virus, and not the virus itself, may cause some of the damage, says Dr. Bunnell.
Then there are people who weren’t critically ill but feel sick even after tests show they don’t have an active case of COVID-19. “These are people who got sick and felt terrible, but maybe weren’t on a ventilator and now three months later they’re still feeling symptoms,” Dr. Bunnell says. Their blood work looks fine and they don’t test positive for COVID-19. Doctors just don’t know why these patients feel sick.
Post-acute COVID-19 symptoms vary, says Dr. Putrino, who is tracking a cohort of 600 individuals with the syndrome at Mount Sinai’s Center for Post-COVID Care. Some patients report the same symptoms they experienced when they had the acute infection and some report new symptoms, like memory loss, sleep disorders, and difficulty concentrating. Experts theorize that most of these new, chronic symptoms are so varied because post-acute COVID-19 syndrome affects the autonomic nervous system, says Dr. Putrino. (This system regulates involuntary responses that we don’t normally think about, like digestion and breathing.) “Since the autonomic nervous system runs through so many organ systems, the symptoms are much more varied and widespread.”
As with most things related to COVID-19, there’s a paucity of data showing how often the syndrome occurs. Researchers estimate that approximately 10% of people in the United Kingdom who had COVID-19 experience symptoms that last longer than three weeks from the time they first felt sick, according to an August 2020 article published in the BMJ. In one small July 2020 telephone study published by the Centers for Disease Control and Prevention (CDC), 95 of 270 symptomatic adults with positive COVID-19 tests reported lingering symptoms two to three weeks after they initially tested positive. And data in China show that 76% of 1,655 patients who were hospitalized with COVID-19 reported at least one symptom six months after they were discharged, according to a January 2021 study published in The Lancet.
Post-acute COVID-19 syndrome risk factors are hard to define too. Research shows that some COVID-19 long-haulers have at least one comorbidity, like heart disease or type 2 diabetes, even if they weren’t critically ill with COVID-19. A small October 2020 study published in Clinical Microbiology and Infection found that 86 out of 130 people who developed noncritical COVID-19 experienced at least one lingering symptom two months after their initial symptoms. Of the 86 long-haulers, 80 individuals had a comorbidity. But that doesn’t necessarily prove that comorbidities are a risk factor for this syndrome.
Dr. Putrino says that at Mount Sinai’s Center for Post-COVID Care, most patients are younger people without comorbidities. “What we currently know is that our data set is far more skewed toward individuals who did not meet criteria for hospitalization,” Dr. Putrino says. “It is a younger cohort than people that we have been traditionally worried about with COVID-19, and the medical history is not across the board but disproportionately represented by individuals who were previously fit and healthy—they were exercising regularly [and] running marathons,” he says.
Then there’s the question of whether post-acute COVID-19 syndrome disproportionately impacts Black and brown people, given that both the coronavirus and many comorbidities do. Right now, it’s unclear. Future research may provide this insight; one current study by Columbia University’s Vagelos College of Physicians and Surgeons is looking at the long-term effects of COVID-19 and will specifically identify health disparities in people of color, according to the National Heart, Lung, and Blood Institute. What we do know is that when people of color do become sick, they’re more likely to face more barriers to getting quality health care for several reasons, including cost, lack of insurance or transportation, and discrimination in the medical system, according to the CDC. So even though it’s heartening that post-COVID clinics are popping up to address this health phenomenon, this kind of care won’t necessarily be within reach for everyone who needs it.
Even though it’s still hard to say who will experience long-term effects, Dr. Bunnell wants to emphasize that post-acute COVID-19 syndrome can affect younger, healthy adults.
Case in point: Dunlop, who was not hospitalized with a severe case of COVID-19. Before getting sick, she took hours-long ballet classes three times a week and regularly joined high-intensity interval training workout classes. That changed after she contracted the virus. “I still now really can’t do anything that gets my heart rate really high because I lose my breath so easily and my heart starts pounding in my chest,” she tells SELF. “Part of it could be because I’ve been sedentary pretty much all year. But I was very much an in-shape person before I got COVID-19.”
The fact that long-haulers may not seem like the quintessential high-risk COVID-19 patient might explain why many of these people feel like their doctors don’t believe their complaints. “Gaslighting is part of the story people come to us with,” Dr. Putrino says. “You could add it as a diagnostic criteria at this point.”
Fortunately, Dunlop’s doctor has been really understanding. But this issue is so new that Dunlop still doesn’t have an effective treatment. “I have had to find my own ways of managing the symptoms,” she says.
The difficulties in treating long-haulers
Because the exact causes of post-acute COVID-19 syndrome aren’t clear, treatments aren’t standardized. Doctors personalize a plan for each patient based on their specific symptoms to help people minimize their daily discomfort. But that’s challenging, too, because a single symptom could have several different causes.
“One patient’s fatigue might be due to a heart issue, or it might be due to a muscle problem, or it might just be that they’re really depressed because they were isolated in the hospital,” says Dr. Bunnell. Someone who experiences fatigue because of cardiovascular problems might feel better with physical therapy, whereas an individual whose fatigue is rooted in depression may benefit from behavioral therapy, Dr. Bunnell explains. There’s not really a way of knowing what a person will respond to, so treatment involves a good amount of trial and error.
Depending on their specific symptoms, long-haulers might try a combination of physical therapy, occupational therapy, and speech therapy to regain some semblance of their pre-COVID-19 health.
At Dr. Putrino’s clinic, patients learn to identify what triggers their symptoms and then how to mitigate their discomfort. For example, people who are still having trouble breathing might practice breathing exercises that strengthen their diaphragms and muscles in their chest wall. This may help them breathe more normally and reduce their stress and anxiety related to shortness of breath. Practitioners at Dr. Putrino’s clinic also walk some patients through a specific form of physical therapy, called autonomic reconditioning therapy, that aims to make their nervous systems work normally.
At the University of Washington clinic, Dr. Bunnell and other doctors are using therapies that are similar to traditional pulmonary and cardiovascular rehabilitation programs. Long-haulers may benefit from physical therapy and exercises that help them slowly regain cardiovascular endurance, muscle strength, and mobility. The plan may look different for everyone, as it needs to factor in each person’s abilities and overall health, but exercises might include walking, biking, mobility exercises, gentle yoga, and bodyweight strength training.
The overwhelming impact of long-lasting symptoms
Dunlop recounts months of struggling with fatigue, fevers, night sweats, and reduced lung capacity, but post-acute COVID-19 syndrome impacts her mental health the most. “The mental load is a whole other part of recovery,” she says.
“I have really, really bad anxiety, way worse than I ever have in my life,” Dunlop says. “The anxiety I’m feeling now is unlike any kind of anxiety I have ever felt.” From the moment she wakes to the moment she goes to bed at night, Dunlop’s mind races with questions like, Will I have enough energy to get all of my work done tomorrow? and Do I have undetected heart damage?
It doesn’t help that Dunlop feels short of breath and extremely fatigued after she exercises. “Not being able to exercise is probably the most difficult for me because intense exercise is how I used to control my anxiety. Without being able to do it, that control level is gone, so that’s also been a struggle for me,” Dunlop says. Now, she practices yoga instead, and it helps temper some of her anxiety.
Then there’s the monetary stress. Chronic illness can drain your finances from medical costs and reduced salary from taking time off work. The Mount Sinai program requires daily rehabilitation work, and there’s no telling if someone will improve in three months, six months, or longer. “We’re having conversations with the Social Security Administration because this is a full-time job for people,” Dr. Putrino says.
The fact that insurance approval is often necessary to help pay for medical treatment can create an impossible financial situation for people with long-haul COVID-19. Approximately 28.5 million people in the United States didn’t have insurance in 2017, according to a 2018 report from the U.S. Census Bureau. That same report showed that approximately 10.6 percent of Black individuals and 16.1 percent of Hispanic people didn’t have health insurance in 2017. This lack of insurance can create massive financial stress for people falling ill in some of the communities bearing the brunt of the virus.
To make the insurance situation even more complicated, some people with long-haul coronavirus never received a definitive positive diagnosis. At the beginning of the pandemic especially, coronavirus testing was limited throughout the country. Some people who thought they had COVID-19 just couldn’t get confirmation. So what happens to people who can’t prove they had the coronavirus but believe they’re dealing with its aftermath?
“We’ve been working around the clock to advocate for the fact that you can’t deny someone access to care based on test status. The World Health Organization released guidelines for presumptive positive diagnosis based on symptoms, so we are following these guidelines,” says Dr. Putrino.
What’s next for long-haulers
It’s too early to know if everyone with post-acute COVID-19 syndrome will make a full recovery. It’s only been about a year since medical experts in the U.S. have been treating patients with COVID-19; they’ve had even less time to figure out what post-acute COVID syndrome is, what causes it, and how to treat it effectively, says Dr. Putrino. “We still don’t have a good answer if this is something people will have to be vigilant about for the rest of their lives,” he says.
But he’s encouraged by his patients’ successes. “I wouldn’t say at this point we have anyone who is saying ‘I am 100 percent where I was pre-COVID-19,’ but we are seeing people running on treadmills again and people who can exercise at a fairly heavy level without being wiped out for two to three days afterward,” Dr. Putrino says. That being said, some patients have setbacks, so there’s no telling if any noticeable improvements will last.
Dr. Bunnell’s sentiments are similar: “I don’t have exact numbers on the recovery trajectory yet, but anecdotally most of our patients make improvements, and I’d say that after about three months, patients who were not in the ICU are doing much better.”
As more people get COVID-19 and the number of people with post-acute COVID-19 syndrome increases, our knowledge about the condition—and who it affects—will grow, says Dr. Putrino. A national study called INSPIRE funded by the CDC will study long-term patient outcomes of the novel coronavirus. The U.S. Department of Veteran Affairs will study the effects of COVID-19 in 9,000 veterans who had the disease.
For now, everyone needs to remain vigilant in protecting themselves against the coronavirus. It’s just another good reason (on an already-long list) to follow local health department recommendations, social distance, and wear masks. “There are all of these young people around the country thinking, ‘It’s okay if I get COVID-19; I’m young and healthy,’” Dr. Putrino says. You may have a lower risk of fatality, but you are susceptible to this new, life-changing condition. “We still can’t figure out who’s going to get post-acute COVID-19 syndrome and who isn’t,” says Dr. Putrino.
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