Long COVID Patients Are Struggling to Get Back to Work

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. She still has symptoms like fatigue, dizziness, blurry eyes, chronic pain and migraines two years later.

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 spokesperson for Baltimore City Public Schools stated that accommodations can be requested by any employee who has a medical condition that limits their ability to work. The system granted 600 requests in the 2020-2021 school years, the majority of which were 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. People with Long COVID symptoms often have difficulty working or are forced to do so through severe discomfort. Long-haulers with Long COVID, also known as long-term workers, were unable to obtain disability benefits. This is often because the symptoms are difficult to explain or document, which makes it more difficult for them to demonstrate their disability.

The situation isn’t unique to those with Long COVID. Millions of Americans have physical or chronic disabilities. Since before the epidemic, advocates have called for improved workplace accommodations and better federal policies on disability. 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.

Long COVID sufferers have relied heavily on remote working to remain 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.

Pandemic preparations are being reassessed and some companies insist on employees returning to work. “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) says that remote work has allowed her to control her unpredictable symptoms. This includes fatigue, nerve pain and cognitive dysfunction. “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 suggests that employers offer plenty of accommodation options to help disabled workers. As an example, allowing people to sit down instead of sitting at the cash registers or reception desks all day can make a big difference. You could also consider taking frequent breaks.

Martin believes that a nap area in the office or a place where she can rest would be helpful on those bad days. Martin says that a flexible work schedule would allow her to work remotely during flare ups. She also mentioned things such as storage spaces for medications, and casual clothing that can accommodate her temperature regulation needs.

Jack, a Colorado 40-year old who requested to be identified only as Jack to discuss his employment problems, seconded the need to have flexible hours.

In January 2021, COVID-19 struck him. He never fully recovered and was eventually forced to quit his highly-paid job as a consultant. Although his employer asked him if accommodations could be requested, he couldn’t see how he could return to the same strenuous pace as before he was 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.”

Many jobs can be difficult to alter even for the best-intentioned employer. 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.

Some employees may need to take a short-term shift. For example, a nurse who provides bedside care might be eligible to work at a call centre to help patients with their queries over the telephone. However, there are some jobs that can’t be changed. “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. Although some individuals recover quickly from Long COVID after a few months of treatment, many people who have been on the road for over a year are still suffering. It’s not clear if or when there will be therapies that allow them to get back to normal.

Americans with Disabilities Act (ASHA) requires that employers make reasonable accommodation for persons 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. Long-haulers may struggle to get their disability acknowledged.

About half of all applicants are granted disability benefits by the Social Security Administration. The Long-haulers have it harder than others because the Long COVID, which is new and difficult to understand, can be 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. It is difficult for long-haulers to get their doctors to consider their symptoms serious, making it more challenging to reach 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. Long COVID should be easier to recognize, Smith hopes. “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.

Some progress has been made on this 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. As doctors become more familiar with Long COVID it should be much easier to diagnose and document.

Ives Rublee insists that there must be more to help long-haulers as well as people living with chronic illness and persons with disabilities.

U.S. The Equal Employment Opportunity Commission (which enforces workplace discrimination laws) requires additional funding. She also says that the Social Security Administration has to hire more staff in order to handle the backlog of benefits requests. She says that expanding Medicaid would allow more people to access insurance and other benefits.

Long COVID is a huge problem that requires systemic solutions. Some companies have begun to make improvements. Goodpath is a personal medicine startup offering its services as an employee health benefit. A program that uses an app to assist people suffering from Long COVID was recently launched. 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 hopes to simplify this process and provide better results for those who pay less.

Some people living with Long COVID may find their lives very different if they don’t have access to programs such as these, or federal protections.

Jack is a former consultant and says he’s come to terms that work won’t be an important part of him life until he recovers. “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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