VSHimére Smith loved his 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 is still experiencing symptoms including fatigue, migraines, blurred vision, chronic pain and dizziness.
Smith says she and her school district have not agreed to any accommodations that would allow her to return to class, so she is currently receiving disability benefits, but they will expire in about six months, leaving her on Social Security. or potentially forcing her back into the labor market. (A Baltimore City Public Schools spokesperson said in a statement that any employee with a diagnosed medical condition that affects their ability to work can request accommodations; the system approved 600 requests during the year. 2020-2021 school year, most related to COVID-19.)
The thought of potentially having to work before she’s ready stresses Smith to the point of physical pain, she says. “Having to go back to work, knowing that I don’t feel good enough in my body yet, is scary,” she says.
Stories like Smith’s are common. Many people with long COVID symptoms are unable to work or have to do their jobs due to extreme discomfort. Other long-haulers, as people with Long COVID are sometimes called, have been unable to obtain disability benefits, in many cases because their symptoms defy easy explanation or documentation, making it difficult to prove that they meet the disability standard.
The situation is not unique to those with Long COVID. Millions of people in the United States suffer from chronic illnesses or physical disabilities, and advocates are calling for better workplace accommodations and federal disability policies long before the pandemic hit. But two big changes in the workforce – a alarming number of newly disabled adults in the USA (many of them are probably long-haul) and millions of open jobs that need to be filled – could ultimately 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 in hours, work styles and dress codes, which allowed some long-haul workers – and many people with disabilities before the pandemic – to continue to do their job.
But pandemic precautions are backing off and many companies are insisting that employees return to the office. “Employers try to push people back to [work]which means we’re back to ‘normal’ and ‘normal’ wasn’t working for a lot of people,” says Mia Ives-Rublee, director of the Disability Justice Initiative at the nonpartisan Center for American Progress. political institute.
Taylor Martin, a 29-year-old long-haul attorney who has worked under contract from her home in Minnesota throughout the pandemic, says working remotely allows her to manage her unpredictable symptoms, including nerve pain, fatigue, cognitive dysfunction and temperature. regulatory issues. “I’m 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 never felt totally comfortable working in an office. But now that she also has symptoms of Long COVID, she can’t imagine working outside the home without major changes to office life, but she knows she may have to eventually, taking into account legal requirements.
Ives-Rublee says employers can provide many accommodations that would make it easier for employees with disabilities to work. Simply allowing someone to sit instead of standing at the checkout or reception all day could make a major difference, she notes as an example. So could guarantee frequent breaks.
Martin says a nap room in the office, or at least a quiet place 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 relaxed dress code that accommodates her temperature regulation issues.
Jack, a 40-year-old Colorado man who asked to speak only by his first name to speak candidly about his employment issues, supports the need for flexible hours.
After catching COVID-19 in January 2021, he never recovered from the resulting fatigue and brain fog and was forced to leave his position as a top consultant. Although he was asked by his company if he wanted to request an accommodation, he saw no way to get back to the grueling pace he had before he fell ill. “The job I had was 60 hours a week minimum” with frequent travel, he says. “It’s quite difficult when everything is going well.”
Jack received disability benefits while out of work, but they will soon expire. He plans to look for a part-time job, but he would need an employer who allows him to work in small shifts and who understands the days when he cannot work at all.
“I’m good for about two or three hours of good work a day,” says Jack. “It’s a hard job to find, especially if I want to get closer to the money I was making.”
Even well-meaning employers find some jobs hard to change. Many health care jobs, for example, must be done in person and are physically taxing, complicating the work of Jennifer Laffey who coordinates health services for employees of New York’s Northwell Health hospital system. About 35 of Northwell’s 78,000 employees have been diagnosed with Long COVID and signed up for its long-haul program. Laffey’s team is working 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 need a temporary change in responsibilities. A nurse who typically provides bedside care, for example, might be able to work in a call center responding to patient inquiries over the phone. Ultimately, however, some positions are difficult to change. “It’s very difficult to get a surgeon out of an operating room,” says Laffey.
For people in specialized roles like these, sometimes a leave of absence is the only option, but it’s not always enough. Some people recover from Long COVID within months, but many long haulers have been sick for over a year. It is not known if or when there will be therapies that will allow them to return to normal.
The Americans with Disabilities Act requires employers to make reasonable accommodations for people with disabilities. But, as Smith and Jack found, this norm doesn’t always translate into a smooth transition to work, either because employers can’t or won’t make certain adjustments, or because people are all simply too ill to keep their jobs. Some long-haul airlines find it difficult to have their disability recognised.
Globally, well under half of claimants successfully obtain disability benefits of the social security administration. Long haulers often go through a particularly difficult time because Long COVID is new, little understood and difficult to document. Some people may have normal medical or diagnostic test results, but remain ill for reasons doctors don’t understand, making it difficult to capture on paper the reasons why they are unable to work. Many long-haulers struggle to get their doctors to take their symptoms seriously, which makes the bar even harder to clear with benefit providers.
Smith, the former English teacher, says she was able to get disability benefits because she suffers from chronic migraines, but, she says, it’s just one of many symptoms . She hopes that Long COVID will soon be more easily recognized. “We have to be very clear about the call, the labeling, the diagnosis [Long COVID] for what it is, so that more people can reap the benefits and the resources,” she says.
There has been progress on this front. In March, Senator Tim Kaine of Virginia announced he had long COVID and helped introduce a bill this would educate employers on long-haul worker 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 conditions of all kinds.
The US Equal Employment Opportunity Commission, which enforces laws that prevent discrimination in the workplace, needs more funding, and the Social Security Administration needs more people to deal with discrimination. backlog of claims, she said. Medicaid expansion would also allow more people to access insurance and other needed benefits, she says.
A problem as massive as Long COVID demands systemic solutions. But in the meantime, some companies are working on improvements. One is Goodpath, a personalized medicine startup that offers its services to businesses as employee health benefits. He recently created a 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, such as breathing exercises, stretching or smell training, tailored to their symptoms. The program has just launched, so it’s too early to have any data on its effectiveness, but Goodpath has started offering it to US employees of major companies, including Yamaha.
Goodpath CEO Bill Gianoukos says the company’s primary goal is to help long-haulers improve, 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 this process, hoping for better results for less money.
However, without the widespread adoption of programs like these or reliable federal protections, some people with Long COVID are forced to recognize that their careers may be very different from what they were before they got sick.
Jack, the former consultant, says he’s come to terms with the fact that work may not be a big part of his life unless he recovers dramatically. “If my lot in life is to be more of a family guy and less of the jet set [career man]”, he said, “I think I can agree with that. “
More Must-Try Stories from TIME