Millions of Americans have long COVID. Many of them are no longer working

A woman sits in an armchair holding a laptop
Georgia Linders got sick with COVID in the spring of 2020 and never recovered. Her ongoing battle with long COVID has prevented her from working. She spends her days advocating for COVID longhaulers like herself and painting, one of the few activities that doesn’t wear her out. (Photo courtesy of Georgia Linders)

More than two years after Georgia Linders first got sick with COVID, her heart still races at random times.

She’s often exhausted. She can’t digest certain foods.

Most days, she runs a fever, and when her temperature gets up past a certain point, her brain feels like goo, she says.

These are commonly reported symptoms of long COVID.

Linders really noticed problems with her brain when she returned to work in the spring and summer of 2020. Her job required her to be on phone calls all day, coordinating with health clinics that service the military. It was a lot of multitasking, something she excelled at before COVID.

After COVID, the brain fog and fatigue slowed her down immensely. In the fall of 2020, she was put on probation. After 30 days, she thought her performance had improved. She’d certainly felt busy.

“But my supervisor brought up my productivity, which was like a quarter of what my coworkers were doing,” she says.

It was demoralizing. Her symptoms worsened. She was given another 90-day probation, but she decided to take medical leave. On June 2, 2021, Linders was terminated.

She filed a discrimination complaint with the government, but it was dismissed. She could have sued but wasn’t making enough money to hire a lawyer.

Survey data suggests millions of people aren’t working because of long COVID

As the number of people with post-COVID symptoms soars, researchers and the government are trying to get a handle on how big an impact long COVID is having on the U.S. workforce. It’s a pressing question, given the fragile state of the economy. For more than a year, employers have faced staffing problems, with jobs going unfilled month after month.

Now, millions of people may be sidelined from their jobs due to long COVID. Katie Bach, a senior fellow with the Brookings Institution, drew on survey data from the Census Bureau, the Federal Reserve Bank of Minneapolis and the Lancet to come up with what she says is a conservative estimate: 4 million full-time equivalent workers out of work because of long COVID.

“That is just a shocking number,” says Bach. “That’s 2.4% of the U.S. working population.”

Long COVID can be a disability under federal law

The Biden administration has already taken some steps to try to protect workers and keep them on the job, issuing guidance that makes clear that long COVID can be a disability and relevant laws would apply. Under the Americans with Disabilities Act, for example, employers must offer accommodations to workers with disabilities unless doing so presents an undue burden.

Linders now she thinks back to what she should have asked for after her return to work. She was already working from home due to the pandemic, but perhaps she could have been given a lighter workload. Maybe her supervisor could have held off on disciplinary action.

“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 couldn’t do, but I kept trying and trying,” she says.

Dr. Monica Verduzco-Gutierrez, professor of rehabilitation medicine at the University of Texas Health Science Center at San Antonio, has seen COVID play out in similar ways in other patients.

“If someone has to go back 100% when they start feeling a little bit better, they are going to crash and burn fast,” she says.

Figuring out accommodations for long COVID can be complicated

The problem with coming up with accommodations for long COVID is that there are so many unknowns. The duration and severity of symptoms varies wildly from person to person.

Gutierrez finds herself stumped by questions on disability forms that ask how long an individual might be out or how long their illness may last.

“This is a new condition,” she says. “We don’t know.”

Accommodations in the workplace might include flexibility in where someone works, extended leave, or a new role in a different department. The goal is to get workers on a path back, says Roberta Etcheverry, CEO of Diversified Management Group, a disability management consulting firm.

But with long COVID, it’s difficult to measure whether an employee is in fact on a path back.

“This isn’t a sprain or strain where somebody turns an ankle and we know in x amount of months, they’re going to be at this point,” she says. “It’s not — 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.”

With long COVID, symptoms come and go, and new symptoms may arise.

The Labor Department is urging employers not to rule out accommodations for employees who don’t get an official long COVID diagnosis.

“Rather than determining whether an employee has a disability, your focus should be on the employee’s limitations and whether there are effective accommodations that would enable the employee to perform essential job functions,” the Labor Department says in its long COVID guide for employers.

Accommodations may be harder to come by in some jobs

Still, not all employers have the means to offer the kind of accommodation an employee may need given their symptoms.

Bilal Qizilbash believes he would have been fired long ago had he not been the boss of his own company.

“Majority of my team has no idea that I’m working from bed most of the time,” says Qizilbash, a COVID long hauler who suffers chronic pain that he compares to wasp stings.

As the CEO of a small business that manufactures health supplements, Qizilbash says he tries to be compassionate and at the same time, ruthlessly efficient. Having one employee whose productivity is severely compromised could end up negatively impacting the whole company, he says.

In other professions, it may be challenging to find accommodations that work, no matter how generous.

In South Florida, Karyn Bishof was a new recruit with the Palm Beach Gardens Fire Rescue team in 2020 when she contracted COVID, likely at a training, she says. She comes from a family of firefighters, and it was her lifelong dream to follow suit. She was excelling in her training and receiving high marks when she got sick, she says. Now long COVID has left her with profound brain fog, fatigue, light-headedness and a slew of other symptoms incompatible with fighting fires.

“I couldn’t run into a burning building if I can’t regulate my temperature,” she says. “If I can’t control having hypertension, I can’t lift up a patient or I’m going to pass out.”

The city of Palm Beach Gardens told NPR Bishof was terminated from her job for not meeting performance-related probationary standards. Bishof recently filed a discrimination lawsuit against the city and has become an advocate for COVID long haulers.

The Labor Department is crowdsourcing ideas for how to keep workers employed

Taryn Williams, Assistant Secretary of Labor for Disability Employment Policy, wants to hear from workers and employers. Through the middle of August, the Labor Department is holding an online dialogue, asking for input on policies that may help with workplace challenges arising from long COVID.

“We want to be responsive,” says Williams. “We’re considering how can we support these workers in what is a transformative time in their life.”

She says the government has encountered situations in the past when there was a sudden rise in the number of people needing accommodations at work. Significant numbers of service members returned from Iraq and Afghanistan with traumatic brain injuries, for example. Williams says such times have led to shifts in disability policy in the U.S.

From her home in La Crosse, Wisconsin, Linders has contributed a number of comments to the Labor Department’s online dialogue. Like Bishof, she also spends a lot of time helping other COVID long haulers navigate what she’s been through, including qualifying for Social Security disability insurance.

Her advocacy helps her feel as if she’s contributing something to society, even if it’s not the life she wanted.

“I don’t want to be disabled. I don’t want to be taking money from the government,” she says. “I’m only 45. I was going to at least work another 20 years.”

Copyright 2022 NPR. To see more, visit https://www.npr.org.

Transcript :

AYESHA RASCOE, HOST:

Close to 20 million adults in the U.S. are believed to have long COVID symptoms right now, according to the Census Bureau. And many of them are reporting that they can’t work through the brain fog, the chronic fatigue and pain that they’re suffering. NPR’s Andrea Hsu has talked with COVID long-haulers and with researchers about the impact long COVID is having on the American workforce. And she joins us now.

Welcome.

ANDREA HSU, BYLINE: Hi, Ayesha.

RASCOE: So the scale of this – it sounds really daunting. Do researchers know how many people have been sidelined from their jobs because of long COVID?

HSU: Well, several surveys have found that roughly a quarter of people with long COVID report that they can’t work, or they’re working less because their symptoms are so debilitating. I talked with Katie Bach. She’s a fellow with the Brookings Institution. She did some math and came up with what she says is a conservative estimate, 4 million full-time equivalent workers out of work due to long COVID.

KATIE BACH: That is just a shocking number. That’s 2.4% of the U.S. working population.

HSU: And then she went a step further to see, how much in wages do these people stand to lose if they’re not working?

BACH: Using just average wage, it’s about $230 billion a year in lost earnings.

HSU: Now, of course, some of these people may have paid leave, and others may still be getting a full paycheck, even if they’re working less than full time. But, Ayesha, all indications are that worker productivity is really suffering because of long COVID.

RASCOE: You spoke with people who have struggled to stay employed. Like, what are you hearing from them?

HSU: Well, some of the stories are really heartbreaking. I talked to Karyn Bishoff in Florida. She was a new recruit with the Palm Beach Gardens Fire Rescue team in 2020 when she got COVID. She believes she got COVID at one of her trainings. And now, more than two years later, she still has profound brain fog, fatigue, lightheadedness and a slew of other symptoms. And she realizes she will never be a firefighter.

KARYN BISHOFF: Like, I couldn’t run into a burning building if I can’t regulate my temperature. Like, if I can’t control having hypertension, I can’t lift up a patient, or I’m going to pass out.

HSU: So she hasn’t been able to work. She’s pretty much bedbound. But she has become an advocate. She’s created a support network online, and she’s pushing for policy changes. She’d like to see the Social Security Administration step up its processing of long COVID disability applications. But the problem here, Ayesha, is there’s so much variability. Even doctors are saying they have no clue how long it might take people to recover. And of course, not everyone is as ill as Karyn Bishoff. Other COVID long-haulers are able to work, although maybe more slowly or in shorter spurts. But still, it’s very concerning. And the Labor Department is trying to find ways to keep people employed.

RASCOE: So what can the Labor Department do?

HSU: Well, they’ve issued guidance stating clearly that long COVID can be a disability. And why that’s important is that people with disabilities have protections under the law. So, for example, employers are required to provide accommodations to workers with disabilities unless doing so presents an undue burden. Accommodations might be working from home or flexible hours. It could be extended leave or maybe a transfer to a different role. Now, of course, not every company can do that, but the Labor Department is urging employers to explore the possibilities. And they’re also holding what they call a virtual crowdsourcing event to gather ideas for what else could make a difference. I spoke with Taryn Williams. She heads up the Labor Department’s Disability Employment Policy Office.

TARYN WILLIAMS: We strongly encourage folks to take advantage of that online dialogue to help inform us on what we should be considering.

HSU: They want to hear from employees, employers, people with expertise in disability employment. You can Google long COVID at work idea scale – that’s S-C-A-L-E – to submit comments.

RASCOE: Has the American workforce ever faced, like, a situation like this before, having so many people at once suddenly needing accommodations for disabilities?

HSU: Well, I asked Taryn Williams that, and she pointed to times of war. Significant numbers of servicemembers did return from Iraq and Afghanistan with traumatic brain injuries, for example. And Williams said it’s been times like these that have led to shifts in disability policy. So we may see that happen now with long COVID, too.

RASCOE: NPR’s Andrea HSU, thank you so much.

HSU: You’re welcome. Transcript provided by NPR, Copyright NPR.

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