People with 'medium COVID' are caught in a gray area of recovery with little support

Waves of fatigue. The inability to smell milk that has gone bad. A racing heartbeat. These are just a few COVID-19 symptoms that can linger after an initial coronavirus infection. Though they may not always amount to the debilitating cases of long COVID-19 that can leave people bedridden or unable to perform daily functions, it's very common to take weeks to fully recover — a condition I've been thinking of as "medium COVID."

I've been reporting on COVID-19 since the coronavirus pandemic started, and I thought I knew what an infection would be like for a young, otherwise healthy person like me. I knew there was a risk for long COVID-19, even with mild cases, but in my mind, there were two types of COVID-19: run-of-the-mill cases that didn't last much longer than their isolation periods required, and long COVID-19, which was relatively rare.

Instead, like so many Americans, I found myself caught somewhere in between.

With record numbers of Americans contracting the coronavirus during the recent omicron surge, many have discovered that recovery has not always happened as quickly as they've been led to expect. But does that mean they have long COVID-19?

"There could be more to help people understand that it's not always a quick bounce back right away after the initial infection," said Dr. Ben Abramoff, director of the Post-COVID Assessment and Recovery Clinic at Penn Medicine in Philadelphia. "This is still a very significant viral infection, and sometimes it's just a more gradual recovery process than people's previous viral illnesses."

This story was produced in partnership with Kaiser Health News.

COVID-19 symptoms that last for weeks may come as a surprise to some, especially after recent messaging from health authorities. In December, the Centers for Disease Control and Prevention announced that those who test positive for the coronavirus can exit isolation after just five days if they are free of symptoms and continue to wear masks.

That recommendation is understandably focused on the period during which someone is contagious, and as a result, it doesn't mention anything about lasting or recurring symptoms that might continue after the person is no longer infectious. But it can have the effect of suggesting that, for most people, the recovery process is, if not five days, pretty quick.

That's the message it sent to me, at least.

Managing my expectations

Like so many Americans, I got COVID-19 over Christmas. I was vaccinated and boosted, and my case was indeed mild: sore throat, sinus pressure and headache, extreme fatigue. After eight days, I was feeling better, and I tested negative two days in a row using rapid antigen tests. I was anxious to get back out into the world. Most people I knew were still lying low to avoid an omicron infection, but I was armed with a bit of extra immunity, making me feel low risk. Party time!

Not quite. Soon after ending my isolation, I had dinner at a friend's house. One glass of wine left me feeling the next day like I'd had a whole bottle. I was bone-achingly exhausted but couldn't sleep that night.

In the days and weeks that followed, as I managed the insomnia, I was also contending with bouts of extreme fatigue brought on by physical activities that are usually easy and even energizing for me: going for a long walk in the cold, riding an exercise bike, taking a sauna. The waves of fatigue, which I started calling "crashes," felt like I was coming down with a sickness in real time: weakened muscles, body aches, the feeling that all you can do is lie down. The crashes lasted for a couple of days, I'd recover slowly, and the cycle would inevitably repeat when I would accidentally push myself beyond my new and unfamiliar limit. It took me about six weeks to start feeling better.

The more I started mentioning my lingering symptoms to people, the more they shared that it had also taken them a month or two to fully feel themselves again.

My colleague Kenny Cooper had a similar experience. He's also young, healthy and boosted. He thought that for him, omicron would be brief.

But Cooper was sick for almost two weeks before testing negative. His symptoms lingered for a few weeks on top of that, putting him in "medium COVID" territory.

It was scary, he said.

"I just felt like there were weights on my chest. I couldn't sleep properly. When I woke up, if I moved around too much, I would start coughing immediately," said Cooper, who had walking pneumonia as a kid and was worried it might be coming back.

His persistent cough kept him from leaving the house for weeks, especially in the frigid January temps.

"As soon as the outside air would touch me, I would just start coughing," he said.

How doctors define long COVID-19

Since the Penn Post-COVID clinic opened in June 2020, Abramoff has seen about 1,100 patients at it. He said there is no official threshold at which someone officially becomes a long COVID-19 patient. If people have been feeling bad for only a few weeks, he considers that to be the tail end of the illness itself. The clinic isn't really in the business of treating COVID-19 in its acute phase.

For those dealing with symptoms for months, the clinic takes a comprehensive approach, evaluating patients and referring them to specialists who can address their particular needs: a pulmonologist for breathing difficulty, a speech pathologist for someone struggling with cognitive issues, even social workers or other support staff who can help people navigate taking time off work and accessing various disability benefits.

But then there is that awkward gray area: people who have been feeling bad for six to eight weeks after their initial infection. Abramoff said when those people come into his clinic, which they often do, he generally sends them home and tells them to rest. They'll likely get better on their own if they take it easy.

For people in that position, his best advice is to take a "watchful waiting" approach: Keep the lines of communication with a primary care doctor open, and be very careful about not rushing back to life as normal.

"You have got to build based on your tolerance," he said. "People were very sick, even if they weren't in the hospital."

Other physicians have drawn a more definitive line demarcating when symptoms cross into long COVID-19. Stuart Katz, a cardiologist and professor at New York University's Grossman School of Medicine, is a principal investigator on a $470 million long COVID-19 study funded by the National Institutes of Health that will collect data from nearly 60,000 long COVID-19 patients across 200 sites nationwide.

For the purposes of his study, Katz and his team will classify symptoms lasting more than 30 days as long COVID-19. Using that benchmark, he estimates that about 25% to 30% of people with COVID infections will have persisting symptoms.

But he said, the 30 days is an arbitrary cutoff point.

"There's this whole spectrum of changing symptoms over time," said Katz.

One study published in Nature last year demonstrated exactly that. It tracked more than 4,000 COVID-19 patients from their initial infection until their symptoms subsided. Participants' infections varied in severity, and they self-reported their conditions through a smartphone app, mostly in the United Kingdom. Roughly 13% of participants reported symptoms that lasted more than 28 days. That dropped to 4.5% after eight weeks and 2.3% after 12, suggesting that many people still dealing with symptoms after a month recover in the following weeks.

But even a small percentage of infected people dealing with medium-range symptoms would mean millions of people: The U.S. has recorded nearly 80 million coronavirus infections to date. If about 9% of those individuals dealt with symptoms for roughly two months, that's 7 million people.

Aside from amounting to millions of people who feel ill and a lasting burden on the health care system, those numbers can add up to have a meaningful impact on the economy. Recent research from the Brookings Institution estimated that lasting COVID-19 symptoms could be responsible for up to 15% of the unfilled jobs in America's labor market.

I was lucky. I could work from home and control the pace of my day. But what if I worked in a restaurant? Or any kind of job where I needed to be on my feet all day? I would have needed to take medical leave. And if that hadn't been possible, maybe quit my job.

The point here is that even if you don't have long COVID-19, it can still take a long time to recover. A bout of medium COVID can happen to anyone — and it's important for patients, their families and their employers to understand that.

Adjusting to "medium COVID"

My crashes lasted for about six weeks after I tested positive. They got better, slowly, as a result of diligent rest and almost nothing else.

Cooper, my colleague, is also mostly improved. His coughing fits have subsided, but he's still dealing with brain fog.

The way most studies quantify long COVID-19 would leave us out.

But what I've started thinking of as my "medium COVID" affected my life. I couldn't be too social, drink or stay up much past 9:30 p.m. After 10 weeks, I just went for my first run — I'd been too afraid to try, since that was what reliably caused me to crash. I wish I'd been more aware that an outcome like this was more than a remote possibility.

Despite it being my job to know a lot about coronavirus infections, I was simply not prepared for a weekslong recovery process. What's worse, if I hadn't started talking to other people who were dealing with ongoing fatigue, I would have almost certainly just tried to push through it. I tried to, at first — as I said, I'm active and otherwise healthy, and I've willed myself out of a lingering illness before. But this is not a run-of-the-mill illness, and doctors say approaching it that way could prolong the recovery process.

That's why Abramoff said it's important to monitor your body and respond accordingly, no matter how mild the initial infection.

"It's something that could kill somebody who's in their 70s. It's the same thing in your body," he said. "It's not nothing."

This story comes from NPR's health reporting partnership with WHYY and KHN (Kaiser Health News).

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