When she first opened her eyes, Heather-Elizabeth Brown found herself in a hospital bed, surrounded by people coaching her through how to breathe. Initially, it struck her as bizarre that she was being encouraged to do something that’s usually automatic, but quickly realized how much effort she had to put into taking a single breath. It took a little longer for everything else to sink in.
That’s because May 19th, 2020 — which Brown now refers to as her “rebirthday” — was when she emerged from a 31-day medically induced coma spent on a ventilator because of complications from Covid-19. “It’s very difficult to explain how surreal it is to wake up in another moment in life, on the other side of something,” Brown says, recalling the experience.
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For Brown, the end of her coma was the beginning of her life with long-Covid — a staggering variety of physical and neurological symptoms and chronic health problems that last at least four weeks after a Covid-19 infection. Four weeks may not sound like the worst, but for Brown and others who were among the first to contract Covid in the spring of 2020, they’ve dealt with long Covid for a year and a half. Though it remains unclear how many people who contract Covid-19 end up with what was previously known as “long-haul” or “long-term” Covid, recent research from Oxford University and the National Institute for Health Research estimates that 37 percent will end up experiencing at least one of their Covid symptoms three to six months after being infected.
While the list of symptoms associated with long-Covid continues to grow, some of the most common include extreme fatigue, cognitive difficulties referred to as “brain fog,” shortness of breath, headaches, joint and muscle pain, and sleep disruptions. Brown experiences many of those, along with additional long-term complications resulting from both her initial infection and subsequent intubation, including Covid-induced diabetes and high blood pressure, blood clots, and mobility issues.
Like many people across the country, Brown, a full-time corporate trainer who also serves as a minister at the Citadel of Praise church in Detroit, was able to work remotely during the first part of the pandemic, but now is required to return to the office. Brown, for one, was lucky: her employer granted the workplace accommodations she requested — including a spot in a nearby parking garage, and permission to wear comfortable clothing to the office — that make it possible for her to perform the tasks required for her job. But even with those, her long Covid symptoms make it challenging to get through her commute, let alone a full workday.
Others with long Covid that Rolling Stone has spoken with have made similar requests for workplace accommodations, only to have them rejected, and their concerns dismissed by employers. And that’s in addition to those with long Covid who are essential workers, or hold other positions that are impossible to do from home. Employees in all segments of the workforce have faced the decision of whether to continue working, putting their health even more at risk, or taking time off to heal — and risk losing their income, and potentially, their job.
That’s hardly surprising, though, given the expectation that people with long Covid simply return to work and press on — as if they’ve recently gotten over a nasty cold, instead of a virus that ravages every system in the human body.
The World Health Organization (WHO), Centers for Disease Control and Prevention (CDC), and National Institutes of Health (NIH) all recognize the long-term effects of Covid-19 as a threat to public health. There is research demonstrating the myriad ways the virus can affect the brain and body far beyond the acute infection, with more to come from ongoing studies, as well as those that will be funded by the nearly $470 million the NIH allocated for long-Covid research.
Ever since SARS-CoV-2 first started to spread globally in the spring of 2020, words and phrases like “never-before-seen,” “novel,” and “unprecedented” have been thrown around a lot in relation to the virus itself, as well as its impact on society. And while long Covid is often slapped with those labels, there is historical and medical precedent for a strange set of symptoms that show up after a viral infection.
In fact, for more than a century, medical professionals have observed and documented post-viral illnesses — with many neurocognitive symptoms comparable to those associated with long-Covid. For example, post-infectious neurological conditions referred to as neurasthenia or “nerve exhaustion” were reported among those who fell ill during the influenza pandemics of 1889 and 1892. And each wave of the 1918 flu pandemic brought with it subsequent diagnoses of parkinsonism, catatonia, and “encephalitis lethargica” among people previously infected by the virus.
More recently, people with invisible illnesses and chronic conditions like myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and fibromyalgia have put in decades of patient-led research, advocacy, and policy work — much of which, for a variety of reasons, policymakers and employers have largely ignored. Many of the challenges people with long-Covid now face in the workplace are the same ones people living with chronic illnesses have been requesting accommodations for and navigating for years. And while any progress in this area — including a better understanding of disability — would be welcome, it shouldn’t require a pandemic to prompt that kind of policy change.
The first thing Michael noticed was how often he dropped his phone — something he had never done before, let alone with regularity. It was April 2020, about a month after he contracted Covid-19. After clearing the acute infection, Michael had a few weeks of a reprieve before the fatigue and brain fog set in, and the numbness and tingling that began in his fingers spread down his arms and legs, gradually transitioning into pain. Eighteen months later, these symptoms haven’t gone away.
From March 2020 until about a month ago, Michael, an administrator at a public community college in the Midwest (who requested that he be identified by his first name only), was able to work remotely. Now, he’s required to come into the office everyday.
In August 2021, Michael, aware of his new limitations, went through the process of filing a reasonable accommodation request to continue to work remotely, detailing the reasons why his daily commute was more than he could handle at that point. His employer denied his request to work from home — even part-time — instead offering him a new chair, footstool, and air purifier to assist him in getting through the day.
“It’s still a struggle getting up and going every day,” Michael tells Rolling Stone. “Some mornings I sit down in the shower because my legs won’t support me. By midday, I’m exhausted — every day. Thursdays feel like moving in molasses. Forget it by Friday.”
Michael’s experiences aren’t unusual, according to Natalie Lambert, PhD, associate research professor of biostatistics and health data sciences at the Indiana University of School of Medicine. In April 2020, she partnered with Survivor Corps, an online support group for people with long-Covid, and has been researching the long-term effects of the virus since then — including its impact on a person’s ability to work.
“It was clear right away that the symptoms that people were experiencing were a much wider range and lasted a lot longer than we officially knew,” Lambert tells Rolling Stone. “I found that very terrifying, and knew that it would take a long time for patients’ experiences to be captured by medical research.”
Part of Labert’s research (initial findings from which are currently under review, but available as a preprint) involved asking people with long-Covid to identify the specific symptoms that have the biggest impact on their ability to work. Some — like fatigue, inability to sleep, inability to exercise, difficulty concentrating, memory problems, confusion, and shortness of breath — were expected. But others, like experiencing a personality change, or a sensation of “brain pressure,” came as more of a surprise. Expected or not, those with long-Covid said that the fact that these symptoms tend to get worse at times, and slightly better at others make working (or doing anything on a schedule) especially difficult.
“One of the biggest things keeping people from going back to work is the recrudescent nature of long-term Covid — meaning that it has this relapsing and remitting pattern for many people,” says Diana Berrent, who founded Survivor Corps in March 2020. “It’s very hard for people to predict when they can return to work or make any sort of promises on dates and times when they don’t know how they’re going to feel.”
Three weeks into her March 2020 Covid-19 diagnosis, Lauren Nichols developed pneumonia as a result of the virus — while simultaneously contending with increasingly serious neurological issues, and facing a work deadline with several billion dollars on the line. As a federal manager for the U.S. Department of Transportation specializing in defense logistics, Nichols was accustomed to a demanding environment, but doing so while her health rapidly deteriorated was different.
“Essentially, I prayed for death,” she tells Rolling Stone. “At that time, I felt as though it was simply too much: the threat of [what would happen] if I couldn’t complete [the task], and the implications of that on various governments — it was a lot of stress. I didn’t have the opportunity to not work. And because of that, I very quickly saw how detrimental being forced to work while chronically ill could be.”
At the end of March, Nichols discovered and joined a Covid support group and patient-led advocacy network called Body Politic, where she now serves as vice president. “Although I didn’t have the health to volunteer and do my work, I chose to sacrifice my health, because I knew that this was a growing crisis, and I wanted to spare people from ending up in my shoes,” she explains. Then, in her seventh month of long-Covid, Nichols developed shingles of the eye, which left her visually impaired. At that point, she requested — and received — an accommodation from her employer to help her navigate this new workplace challenge.
Unfortunately, many people with long-Covid have found themselves in situations where aspects of their job that were never problematic before Covid now seriously impact their mental health. Michael is among them, and struggles with the parts of his day that involve dealing with other people.
“Face-to-face interactions are nerve-wracking for me because the brain fog episodes are especially embarrassing — those were easier to cover up when online,” he explains. “Every work relationship I have is worse than before I was sick. I’m probably too negative or self-centered in conversations. Part of me simply doesn’t care because they can’t help with the pain.”
Then there’s the anxiety that comes from being in situations that make him physically uncomfortable or unsafe. “I’m terrified of being too close to people,” Michael says. “If people aren’t distancing or masking in a closed space, I can’t be there. I will panic.”
At an event marking the 31st anniversary of the Americans with Disabilities Act (ADA) in July 2021, President Joe Biden announced that long-Covid could qualify as a disability under federal civil rights laws, pointing to recently released guidance from the Departments of Health and Human Services, Justice, and Labor. While this was a step forward in legitimizing the lasting effects of a Covid-19 infection, it left many questions unanswered — including how, exactly, the ADA can be applied to people with long-Covid.
According to Elizabeth Pendo, JD, professor of law at St. Louis University and an expert on employment and disability law, the ADA’s workplace protections apply to qualified people with disabilities — meaning individuals who are able to perform the essential functions of the job, even if they need accommodations to do so. Currently, multiple federal agencies have recognized that long-Covid can be a disability under the ADA “when physical or mental symptoms — such as brain fog, fatigue, or difficulty breathing — make it harder to perform activities like concentrate, stand for long periods of time, or breathe,” she explains.
But as promising as that may sound, the application of the ADA and its protections are determined on a case-by-case basis — by a person’s employer.
“Employers may have more leeway here, as they traditionally have been given discretion to determine which job functions are essential,” Pendo tells Rolling Stone. “Because people with long-Covid experience a wide range of symptoms, employers need to consider the employee’s specific situation to determine how the ADA’s protections apply.”
In Michael’s case, his university employer denied his request to work remotely — as he had done throughout the pandemic — on the basis that it “wasn’t feasible,” he says. Part of his job involves monitoring student use of an on-campus resource, and in his accommodation request, he proposed a way he could perform the task remotely via the existing technology available in the office.
But what Michael didn’t count on was his employer suddenly enacting a new policy requiring all supervisors to be present in person, and, in turn, disqualifying his proposed solution. “I have soldiered through a month of regular hours, and my body is worn down,” he says. “By the afternoon, I can barely function. If I can’t function and have to take sick time every afternoon, I’ll run out of [paid time off] in a month. Then what?”
Now, Michael says the next step is speaking with his union to see whether it’s possible to fight the university’s decision. If that doesn’t work, he’ll have to find another job. But not everyone with long-Covid is able to appeal their employer’s decision or look for something new. “You have to be in a position of privilege to be able to take that route,” says Megan Ranney, MD, a practicing emergency physician and the associate dean for strategy and innovation at Brown University.
At this point, long-Covid is still poorly understood, which, Pendo says, can make it challenging for employees like Michael to access the ADA’s workplace protections. And it doesn’t help that there isn’t an objective diagnostic test for long-Covid (but rather an extensive and diverse set of symptoms), and that new research findings are emerging on a regular basis.
There’s also the question of how to effectively accommodate employees with long-Covid, given the range of challenges they face. “Some people with long-COVID are able to do their jobs despite ongoing symptoms — others might need accommodations of some kind,” Pendo explains. “It is possible that in severe cases, others may be so incapacitated for a period of time that they cannot perform their job, even with accommodation.”
At this stage, the pandemic is far from over. A portion of the thousands of new Covid-19 cases diagnosed every day will result in long-Covid, leaving even more employees facing new obstacles in the workplace.
That’s part of what Ranney and her colleagues at the Brown University’s School of Public Health are investigating in their Long Covid Initiative, which she co-leads. The aim of the project is to examine the social and economic impacts of long-Covid — including on the workplace — through an equity lens, with the goal of developing policy recommendations “that work not only for the privileged, but across all layers of our society,” she tells Rolling Stone.
According to Ranney, the Long Covid Initiative will bring together clinicians, employers, government officials, insurance companies, patients, and community-based organizations to review the latest evidence with the goal of identifying “the next steps that we, as a society, should take to support the millions of people that are experiencing this syndrome,” and ways to “create structures that acknowledge the impact that long-Covid is having on our population.”
Ultimately, Ranney hopes that the initiative will be an opportunity to improve the lives of people living with other chronic conditions and invisible illnesses who have been working in this space for years. “I think that if long-Covid is addressed properly, it gives us a chance to create solutions for people that have been suffering from other chronic diseases, that there’s just never been an interest in or commitment to,” she explains. “The same way that Covid drove the finalization of new technologies for vaccines, I think we can do the same thing for post-viral syndromes here.”
Lambert agrees, noting that the sheer number of people who are going to end up with long-Covid will make the group and their needs impossible to ignore. “We’re really hoping that long-Covid — as terrible as it is — is a moment in medical history that can shed light on invisible illnesses, and get people with chronic conditions the support, research, and recognition they need,” she says.
Meanwhile, Nichols is approaching policy change as a patient advocate, employee of the federal government, and person with long-Covid. “At Body Politic, we work with NIH, CDC, and a multitude of medical and research organizations to ensure that patient voices are involved in policy-making,” she says. Additionally, she has organized after-working-hours informational seminars for groups of federal employees on how to support colleagues living with chronic conditions and invisible illnesses, including long-Covid.
Ultimately, her goal is to get the federal government — itself a major employer — to recognize the importance of providing reasonable medical accommodations to people living with a variety of disabilities, in the hopes that employers in the private sector will follow suit. “I’m hoping for a trickle-down effect,” she explains. “That’s really been the crux of my advocacy work within the federal government — because if we aren’t addressing it now, it’s never going to be addressed.”
And even without policy explicitly outlining how to accommodate people with long-Covid in the workplace, employers can start by coming from a place of empathy and support, rather than doubt and disbelief.
“I know that a lot of people are struggling when it comes to working while dealing with long-Covid, but there’s a way for employers to be helpful and compassionate towards their employees,” Brown says. “And as difficult as it may be for the companies, it’s exponentially more difficult for those of us who are going through it.”
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