“We just don’t know what’s happening in our bodies”: Covid-19 long-haulers are still suffering

The terrible uncertainty of symptoms that persist for months and months.

On March 15, Melanie Montano woke up with a fever and chills. Her Covid-19 symptoms progressed quickly; she lost her sense of smell and taste and had trouble breathing.

Seven months later, she’s still struggling with fevers, brain fog, fatigue, and pain in her arms and legs. She’ll feel better some days, only to feel worse the next, in what she calls the “coronacoaster.”

With 8 million cases of Covid-19 now confirmed in the US, stories like Montano’s are becoming increasingly common. But you might not know it from listening to President Trump. In his first extended statement in October since his own diagnosis, he falsely implied that everyone infected with the coronavirus can expect a rapid and full recovery. “Now what happens is you get better,” he said. “That’s what happens, you get better.”

For many diagnosed with Covid-19, nothing could be further from the truth. Preliminary research suggests somewhere between 10 and 99 percent of people continue to have symptoms for at least two months after infection.

“When Trump says ‘don’t be afraid of it’ — I’ve been so angry in the last week, I’m just trying to calm down,” says Kate Meredith of Beverly, Massachusetts, who has been experiencing Covid-19 symptoms since mid-March.

Win McNamee/Getty Images

To this day, Meredith has fevers four to five days a week. “I go up one flight of stairs and can’t breathe,” she says. She also now has tachycardia, a heart condition where standing up too quickly makes her heart rate jump to 140. Since March, she has been to the emergency room three times, and to the doctor 35 times. She still gets debilitating headaches almost daily, and has run out of her two and a half months of medical leave.

Meredith and Montano are among thousands of people who have continued to experience extended symptoms or suffered relapses after an initial coronavirus infection. As new information emerges about the many, varied impacts that can linger, patients are facing doubt from doctors, and structural failures that loom over an uncertain future.

What percentage of Covid-19 patients have persistent symptoms?

There have been a number of studies now trying to answer this question, but there isn’t consensus about the true prevalence of long-term Covid-19 symptoms. Much of the preliminary research has been limited to small numbers of patients, and many focus on hospitalized patients, obscuring what happens to milder cases.

For example, one study out of Wuhan, China, of 153 non-hospitalized confirmed coronavirus patients found that 22 percent of patients had experienced symptom relapse, and 11 percent of patients had symptoms for more than eight weeks. (It also found a whopping 77 percent of patients had neurological symptoms.)

Other research focusing on outcomes for severely ill Covid-19 patients who were hospitalized reports worse odds, like one study in Italy that found 87.4 percent of people had not totally recovered after 60 days. (That said, recovery from intensive care for any illness can take weeks or months; for example, only 33 percent of sepsis patients have returned to work within three months.) Of the 143 patients in the study, 55 percent still had three or more symptoms, like fatigue, chest pain, and shortness of breath, at day 60.

Go Nakamura/Getty Images

Another study followed hospitalized patients for nearly twice as long, 111 days. They also found that 55 percent of patients continued to have fatigue, 42 percent had shortness of breath, and 34 percent reported loss of memory.

Yet another study of more than 112 hospitalized and 2,001 non-hospitalized patients in the Netherlands found that only 0.7 percent of people were symptom-free 79 days after their infection. (The most common symptoms were fatigue and difficulty breathing, although the number of symptoms people experienced decreased over time.)

Studies that include non-hospitalized patients can have limitations in how they find participants, and in their sample sizes. The COVID Symptom Study, for instance, has asked people to self-report their symptoms into an app after their diagnosis. Analyzing data from 4 million people in the US, UK, and Sweden, the researchers found that approximately 10 percent of people experience prolonged illness for more than three weeks after Covid-19. But many users have reported frustration with the app not including certain symptoms, or needing to answer questions daily that didn’t feel applicable, so user retention suffered.

The National Institutes of Health recently updated its Covid-19 guidelines to include a description of persistent symptoms. These state that neurologic and psychiatric symptoms have been reported in coronavirus patients, including high rates of anxiety and depression, particularly in younger patients. They add that patients may experience “headaches, vision changes, hearing loss, loss of taste or smell, impaired mobility, numbness in extremities, tremors, myalgia, memory loss, cognitive impairment, and mood changes for up to 3 months” after their initial illness.

No one has yet defined how long “long Covid” might last — many of the studies simply stopped tracking people after a set time. But research on other severe coronaviruses like SARS shows that 40 percent of previously hospitalized patients had chronic fatigue symptoms 3.5 years after their diagnosis. Clinicians and patients don’t know what this might mean for Covid-19 patients with persistent symptoms.

Leonard Jason, a professor of psychology at DePaul University and director for the Center for Community Research, is enrolling participants in two studies to try to help understand risk factors in both children and adults with long Covid. “There’s almost no questions that have been answered,” he says. “We really don’t know a lot.”

People with cardiac or lung problems may have sustained damage to their organs, but many people are also experiencing symptoms without good explanations, he says. “Some people stay ill, even when they seem okay” from clinical tests, he said. “That’s a massive challenge.”

Mike Ryan, the executive director of WHO’s Health Emergencies Program, said at a press conference that right now, long Covid is a risk “that you cannot quantify.” But, he said, it’s still a huge reason to stop the spread of the virus. “We need to avoid all Covid-19 infections, both in terms of reducing transmission but also in reducing the long-term health impacts of this disease.”

Who is most at risk of developing long Covid?

Long-term Covid-19 is not equally distributed among the population. Just like the initial viral severity, these lingering symptoms seem to hit those with certain risk factors more frequently.

The World Health Organization says that risk factors for persistent symptoms include high blood pressure, obesity, and mental health conditions. But many previously healthy and active people have also had long-term issues.

In one study of 139 hospitalized patients in Wuhan, the median age of those with persistent symptoms was 55, and half previously had one or more other conditions, like hypertension, diabetes, or heart disease. But the study only looked at patients with severe initial symptoms.

The US Centers for Disease Control and Prevention conducted a telephone survey of 292 adults who’d tested positive for Covid-19 from April to June — including those with both mild and severe cases. They found that two weeks after their diagnosis, 35 percent of people weren’t back to normal, and between the ages of 18 and 34, 20 percent of people reported prolonged symptoms. About half were women, and Hispanic and Black people were overrepresented.

To truly answer the question of who is most at risk, scientists will need to do longitudinal studies tracking large groups of Covid-19 patients with both mild and severe symptoms, for months or even years. These studies would ideally include biologic samples over time as well as self-reported symptoms and medical histories. Then they’ll need to use analysis methods to eliminate confounding factors in order to identify what might put people at risk.

William Campbell/Getty Images

Although the little research there has been on long Covid has focused on adults, children can also have persistent symptoms. For example, Courtney — a mother in Calgary, Canada, who asked that she and her son be identified by their middle names for the sake of her children’s privacy — can recite the dates and details of her son’s ordeal by heart. “I’ve told this story so many times because we’ve been in and out of the hospital for months,” she says.

All three of her young children got sick with Covid-19 in early February. One of her 1.5-year-old twins, Alexander, got better — only to get a high fever and full-body rash about a month later.

Although he wasn’t able to get a Covid-19 test, his infectious disease team and pediatrician now both believe Alexander actually had MIS-C, a rare but severe condition associated with the coronavirus — or possibly long Covid. Since April, he’s been hospitalized three times and to the ER twice more, and continues to have persistent skin lesions, conjunctivitis, and chronic fatigue. He has nightmares from the trauma of visiting the hospital at least once a week for eight months.

“He wakes up screaming, ‘No, no, ow, ow,’” Courtney says. No one can tell her when he might improve. “Just because we don’t have the data that Covid-19 negatively affects babies and children doesn’t mean they are somehow immune.”

Kate Meredith’s daughter also got Covid-19, two weeks after Meredith did. While she initially had a mild case, seven months later she continues to have extreme fatigue and tachycardia. On her first day of in-person classes this fall, she fell asleep. “How do you explain that to teachers?” Meredith asks.

There’s currently little conclusive data on how many children may suffer from persistent symptoms, in part because it’s a population that frequently have mild or no symptoms — making initial testing and later complications like MIS-C more difficult to diagnose.

Jason, who is studying children’s risk factors for long Covid, says, “If kids don’t recover from an illness, that’s really significant,” adding that long-Covid children will need lots of additional support. “You have to be very concerned that these kids don’t end up continuing a downward cycle of loss and stress.”

Long-Covid patients navigate doubt and difficulty in the medical system

Because symptoms can be varied, long-Covid patients have also had to seek out multiple medical specialists who may not communicate much with one another.

For example, Meredith still has neurological, pulmonary, and cardiac symptoms. “Should I go see a neurologist?” she asks. “All these smaller symptoms require so much specialized attention.” Even with a positive test, she’s encountered doubt in the doctors she’s turned to.

“Obviously this is uncharted territory for a lot of doctors,” she says. “We just don’t know what’s happening in our bodies.”

Many with long-term symptoms are also having trouble proving they ever had Covid-19, since many have been unable to get a test, due to testing scarcity.

When Matt Kuzelka got sick in March, he struggled to find somewhere to get tested, while trying to isolate himself from his wife and three kids in their small Brooklyn apartment. When he was finally able to find an opening at a testing center in Manhattan, he asked the center how he was supposed to travel there. “They said, ‘You can take the subway or Uber,’” he recounts, “but I knew I had it. I was like, ‘What about the driver?’ and they said, he’s just going to have to take his chances.’” Kuzelka ultimately decided not to take the risk of exposing anyone else.

Seven months later, he’s having trouble navigating the additional medical care he now needs, like cardiac MRIs. “It’s been harder to navigate the world of health care needs, because I don’t have a positive Covid test.”

For others, their struggle has been complicated by deeper systemic issues. Montano, who has asthma, needed a doctor’s referral in order to get tested in New Jersey in March. But her now ex-primary care physician initially refused to give her one. “He thought I was being theatrical and told me to take a nap,” she says. Less than a week later, Montano was taken to the hospital by ambulance, where she was initially put on supplemental oxygen — but rather than being admitted, she was sent home to her elderly mother without any additional treatment.

Montano, who describes herself as a light-skinned mixed-race woman, describes a feeling of helplessness in trying to get medical care. “You don’t want to be too vocal, you don’t want to overstep with your family, there’s this facade you want to uphold to save face, and also you have to admit that you’re just human. But how do you admit you’re just human when you’re treated less than human?” she says. In addition to being disproportionately exposed to the virus, Montano says, “Black and Latino communities don’t get treated as timely or as well.”

“I’m still not sure what the future entails”

To try to help patients get more coordinated care, several post-Covid care clinics have popped up around the country; one at Mount Sinai initially required a positive Covid-19 test, although it has since opened its criteria. Their waitlist for new patients is now at least six weeks, according to Gothamist.

While patients wait, there’s the added economic and family stress of being sick for so long. “It’s just been this surreal extended medical nightmare for both of us,” Meredith says, adding, “I haven’t even looked at all the bills yet; it terrifies me.” She’s a single mom, and when she was really ill, her daughter — whom at one point Meredith had to leave at home alone as she drove herself to the ER — asked, “What happens if you die?”

“I downplayed it, but I’ve been worried about my future. If I were to have debilitating symptoms, would I have a job left? Would I be able to take care of her?” Meredith pauses. “I’m still not sure what the future entails.”

Because the truth is that because this is an entirely new illness, no one can tell long-Covid patients if they will return to their normal selves, or how long that might take to happen. This makes moving forward into a life shaped by their disease more difficult.

Especially without a visible illness, Jason says, “Our society does not value people who are sick. If you don’t have a credible, understood illness, you’re basically falling out of the mainstream, and in a very vulnerable situation.”

Lois Parshley is a freelance investigative journalist. Follow her Covid-19 reporting on Twitter @loisparshley.

Help keep Vox free for all

Millions turn to Vox each month to understand what’s happening in the news, from the coronavirus crisis to a racial reckoning to what is, quite possibly, the most consequential presidential election of our lifetimes. Our mission has never been more vital than it is in this moment: to empower you through understanding. But our distinctive brand of explanatory journalism takes resources. Even when the economy and the news advertising market recovers, your support will be a critical part of sustaining our resource-intensive work. If you have already contributed, thank you. If you haven’t, please consider helping everyone make sense of an increasingly chaotic world: Contribute today from as little as $3.