JUANA SUMMERS, HOST:
Some 16 million working-age Americans currently have long COVID. That's according to the Census Bureau. And for many of them, the symptoms are so debilitating, they're unable to work or they're struggling to do the jobs they did before. And now COVID long-haulers are speaking out about what they need to stay employed. NPR's Andrea Hsu reports.
ANDREA HSU, BYLINE: Georgia Linders got sick with COVID early in the pandemic. More than two years on, she continues to experience what are now commonly reported symptoms of long COVID. Her heart races at random times. She's often exhausted. She has digestive issues, and most days, she runs a fever.
GEORGIA LINDERS: Oh, yeah, probably have a fever right now. I was going to check it.
HSU: She whips out a digital thermometer.
LINDERS: Well, 99 isn't that high. When my fever gets up past a certain point, my mood changes and all the cognitive stuff - just, like, my brain feels like goo.
HSU: That's what happened when Linders went back to work for a few months in the spring and summer of 2020. Her job required her to be on the phone all day, coordinating with health clinics that service the military. It was a lot of multitasking, something she'd excelled at before COVID. After COVID, she had brain fog and fatigue. Her work suffered. That fall, she was put on probation and given 30 days to improve her performance.
LINDERS: And I thought I had improved, but my supervisor brought up my productivity, which was like a quarter of what my co-workers were doing.
HSU: She felt demoralized. Her symptoms got worse. She decided to take medical leave, and six months later, she was terminated. She filed a discrimination complaint with the government, but it was dismissed. She could have sued, but she wasn't making enough money to hire a lawyer. Now she thinks back on what she should have pushed for. She was already working from home, but maybe she could have had a lighter workload. Maybe her supervisor could have held off on disciplinary action.
LINDERS: You know, maybe I wouldn't have gotten as sick as I got because I wouldn't have been pushing myself to do the things that I knew I couldn't do, but I kept trying and trying.
HSU: Dr. Monica Verduzco-Gutierrez of the University of Texas, San Antonio, has seen it before.
MONICA VERDUZCO-GUTIERREZ: If someone has to go back 100% when they start feeling a little bit better, they are going to crash and burn fast.
HSU: The thing about long COVID, there are still so many unknowns. The symptoms are highly varied, and no one knows how long the symptoms will last. Gutierrez encounters the question all the time when she's filling out disability forms.
VERDUZCO-GUTIERREZ: How long do you expect this patient to be out? Like, this is a new condition. We don't know.
HSU: The uncertainty complicates things for employers, too. Do you offer accommodations like a flexible schedule or extended time off or a less taxing role in another department? And if so, for how long? Roberta Etcheverry has been fielding a lot of such questions lately. As a disability management specialist, she helps employers and employees find accommodations that work for everyone. With long COVID, it's challenging.
ROBERTA ETCHEVERRY: This isn't a sprain or a strain where, you know, somebody turns an ankle and we know an X amount of months, they're going to be at this point; or if somebody was helping move a patient and they hurt their back and they can't do that kind of work anymore, they need to do something else.
HSU: Accommodations are supposed to help workers get on a path back, she says. But with long COVID, you don't know whether, say, three months of leave will help resolve symptoms or not. And for some employers, three months of leave is not viable. Now, companies don't have to approve accommodations that present an undue burden to their business, but Etcheverry urges her clients to try to find something that works.
ETCHEVERRY: You have to show that you're actually not discriminating - right? - that you know what the law is, that you're willing to give a good faith effort.
HSU: Georgia Linders believes her employer did not make a good faith effort. But she's also tried to put herself in their shoes.
LINDERS: I understand it from a business point of view. Like, why would you want to keep an employee that all of a sudden can only do a fraction of what they could do before?
HSU: After a long process, she's now getting Social Security disability insurance. She spends what energy she has on advocacy, helping other long-haulers stay employed. It helps her feel like she's contributing something to society, even if it's far from the life she wanted.
LINDERS: You know, I don't want to be disabled. I don't want to be taking money from the government. I'm only 45. I was going to at least work another 20 years.
HSU: Now her work is all about getting by one day at a time. Andrea Hsu, NPR News. Transcript provided by NPR, Copyright NPR.
