Chimére Smith used to love her job as an English teacher in the Baltimore public school system. But she hasn’t taught since March 2020, when she caught COVID-19 and then developed Long COVID. Two years later, she still experiences symptoms including fatigue, migraines, blurry vision, chronic pain, and dizziness.
Smith says she and her school district haven’t agreed upon accommodations that would allow her to return to the classroom, so she currently receives disability benefits—but they will expire in about six months, leaving her to rely on Social Security or potentially forcing her back into the workforce. (A Baltimore City Public Schools spokesperson said in a statement that any employee with a diagnosed health condition that affects their ability to work can request accommodations; the system approved 600 requests during the 2020-2021 school year, most related to COVID-19.)
The thought of potentially having to work before she’s ready causes Smith stress to the point of physical pain, she says. “Having to return back to work, knowing that I don’t feel well enough in my body still, is scary,” she says.
Stories like Smith’s are common. Many people with Long COVID symptoms are unable to work or must do their jobs through extreme discomfort. Other long-haulers, as people with Long COVID are sometimes known, have been unable to secure disability benefits, in many cases because their symptoms defy easy explanation or documentation, making it difficult to prove they meet the standard for disability.
The situation isn’t unique to those with Long COVID. Millions of people in the U.S. have chronic illnesses or physical disabilities, and advocates have been calling for better workplace accommodations and federal disability policies since well before the pandemic. But two big changes in the workforce—an alarming number of newly disabled adults in the U.S. (many of them likely long-haulers) and millions of open jobs that need to be filled—may finally force companies to become more accommodating.
Many people with Long COVID have relied on remote work to stay employed. Working from home during the pandemic naturally offered flexibility around schedules, working styles, and dress codes, which made it easier for some long-haulers—and many people who were disabled before the pandemic—to continue doing their jobs.
But pandemic precautions are rolling back, and many companies are insisting that employees return to the office. “Employers are trying to push people back into in-person [work], which means that we are going back to ‘normal’—and that ‘normal’ wasn’t working for a lot of people,” says Mia Ives-Rublee, director of the Disability Justice Initiative at the Center for American Progress, a nonpartisan policy institute.
Taylor Martin, a 29-year-old lawyer and long-hauler who has done contract work from her home in Minnesota throughout the pandemic, says remote work allows her to manage her unpredictable symptoms, including nerve pain, fatigue, cognitive dysfunction, and temperature regulation issues. “I’ll be fine for a week or a month or a few days,” she says, “and then it’s like [I’m] hit by a bus, and it’s all back.”
Martin had irritable bowel syndrome before she developed Long COVID, so she’s never felt totally comfortable working in an office. But now that she also has Long COVID symptoms, she can’t imagine working outside her home without major changes to office life—but she knows she may have to eventually, given the demands of the legal field.
Ives-Rublee says employers can offer plenty of accommodations that would make work easier for disabled employees. Simply allowing someone to sit instead of standing at a cash register or reception desk all day could make a major difference, she notes as one example. So could guaranteeing frequent breaks.
Martin says an office nap room, or at least a quiet area where she could rest, would help on bad days. A flexible schedule that allows her to work from home during flare-ups is also crucial, she says, as are things like storage areas for her medications and a casual dress code that accommodates her temperature regulation issues.
Jack, a 40-year-old from Colorado who asked to go by first name only to speak candidly about his employment issues, seconds the need for flexible schedules.
After he caught COVID-19 in January 2021, he never recovered from the resulting fatigue and brain fog and was forced to leave his high-powered job in consulting. Though his company asked if he would like to request accommodations, he saw no way to get back to the grueling pace he kept before he got sick. “The job that I had was 60 hours a week minimum” with frequent travel, he says. “It is quite challenging when perfectly fine.”
Jack has received disability benefits while out of work, but they’ll expire soon. He’s considering looking for a part-time job—but he’d need an employer who allows him to work in short chunks and is understanding about days when he can’t work at all.
“I’m good for about two or three hours of good work per day,” Jack says. “It’s a tough job to find, especially if I want to get anywhere close to replacing the money I was making.”
Even well-meaning employers find certain jobs difficult to modify. Many health care jobs, for instance, have to be done in person and are physically taxing, which complicates Jennifer Laffey’s job coordinating employee health services at New York hospital system Northwell Health. About 35 of Northwell’s 78,000 employees have been diagnosed with Long COVID and enrolled in its program for long-haulers. Laffey’s team works with human resources and other departments to help them get back to work and match them with clinicians in the Northwell system for treatment.
In some cases, employees require a temporary shift in responsibilities. A nurse who typically delivers bedside care, for example, might be able to work in a call center to answer patient inquiries over the phone. Ultimately, though, some positions are difficult to tweak. “It’s very hard to take a surgeon out of an operating room,” Laffey says.
For people with specialized roles like these, a leave of absence is sometimes the only option—but it’s not always enough. Some people recover from Long COVID in a few months, but many long-haulers have been sick for longer than a year. It’s not clear if or when there will be therapies that allow them to get back to normal.
The Americans with Disabilities Act requires employers to make reasonable accommodations for people with disabilities. But, as Smith and Jack found, that standard doesn’t always translate to a smooth transition back to work, either because employers can’t or won’t make certain adjustments or because people are just too sick to maintain their positions. Some long-haulers struggle to have their disability recognized at all.
Overall, well under half of applicants successfully get disability benefits from the Social Security Administration. Long-haulers often have a particularly difficult time because Long COVID is new, little understood, and hard to document. Some people may have normal results on medical or diagnostic tests but remain sick for reasons doctors don’t understand, which makes it hard to capture on paper why they are unable to work. Many long-haulers struggle to get their physicians to take their symptoms seriously, which makes the bar even harder to clear with benefits providers.
Smith, the former English teacher, says she was able to get disability benefits because she has chronic migraines—but, she says, that is just one symptom among many. She hopes Long COVID will soon be more readily recognized. “We need to get very clear about calling it, labeling it, diagnosing [Long COVID] for what it is, so more people are able to get the benefits and the resources of that,” she says.
There has been some progress on that front. In March, Sen. Tim Kaine of Virginia announced that he has Long COVID and helped introduce a bill that would educate employers about long-haulers’ rights and make it easier for patients to access support services. And as doctors learn more about Long COVID, it will hopefully become easier to diagnose and document.
But Ives-Rublee says more needs to be done to protect long-haulers and people with disabilities and chronic illnesses of all kinds.
The U.S. Equal Employment Opportunity Commission, which enforces laws that prevent discrimination in the workplace, requires more funding, and the Social Security Administration needs more people to work through the backlog of requests for benefits, she says. Expanding Medicaid would also give more people access to insurance and other necessary benefits, she says.
A problem as massive as Long COVID demands systemic solutions. But in the meantime, some companies are working toward improvements. One is Goodpath, a personalized medicine startup that offers its services to businesses as a health benefit for employees. It recently created an app-based program for people recovering from Long COVID. After completing a detailed questionnaire, each user is paired with a health coach and given daily tasks—like breathing exercises, stretches, or smell training—tailored to their symptoms. The program just launched, so it’s too soon to have data on its effectiveness, but Goodpath has begun offering it to U.S. employees of big companies, including Yamaha.
Goodpath CEO Bill Gianoukos says the company’s primary goal is to help long-haulers get better, but there’s also a financial incentive for employers to use the program. Many people with Long COVID can’t see top experts or get into specialty clinics, which means they often bounce from doctor to doctor, racking up health care costs without seeing much improvement. Goodpath aims to streamline that process, hopefully leading to better outcomes for less money.
Without the wide adoption of programs like these or reliable federal protections, however, some people with Long COVID are forced to acknowledge that their careers may look very different than they did before they got sick.
Jack, the former consultant, says he has come to terms with the fact that work may not be a big part of his life unless he makes a dramatic recovery. “If my lot in life is to be more of a family guy and less of the jet-set [career man],” he says, “I think I can be okay with that.”
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Contributor: Jamie Ducharme