As New Jersey entered lockdown in March, Alexa was sent home from her job at a dental office. Like so many others, she rarely ventured out of the house in the following weeks, save for two grocery trips. “I was very nervous about it,” she says of the coronavirus. “Probably even a little more so because I work in the medical field.” Under normal circumstances, Alexa sang in a band by night, and while quarantined, she started sharing Facebook livestreams of herself singing. One evening, her mom mentioned she looked exhausted while singing and like she was having a hard time catching her breath. The next day, Alexa started showing symptoms of COVID-19.
Alexa, who is 46 and asked to use a pseudonym, has never had any serious health issues. But since falling ill, she has been in and out of doctors’ offices, and she has been to the emergency room four times. For more than two months after getting sick, Alexa had gastrointestinal issues on a daily basis and could barely get out of bed. “I just knew that it was completely taking over my body,” she says. “I knew that this was something that was just greater than anything I had ever had before.”
Even five months later, Alexa says she has severe brain fog and is unable to resume working. She did manage to secure unemployment payments and retain insurance through her employer. But in May, when Alexa was fighting the worst of the illness, her health insurance was temporarily terminated without notice for a few weeks, right as she was trying to schedule an emergency colonoscopy and endoscopy. Her boss explained it away as a clerical error and reinstated her insurance. But Alexa was shaken by the experience, which she took as a sign that her employer has no intention of letting her return to work.
Alexa is part of a small but growing coterie of COVID-19 patients who call themselves long-haulers—people who have remained sick for months and months, plagued by an onslaught of varied symptoms. As they navigate doctors’ appointments and mounting medical bills, many long-haulers are simultaneously losing months of pay or fighting for alternate work arrangements so they can stay afloat financially.
Surveys seem to indicate that most of these patients are younger women without preexisting conditions. Some of their symptoms are remarkably similar, most notably the extreme fatigue and brain fog that persists for months, even after they start to feel better. A number cite gastrointestinal issues and headaches; others say their fever has never dissipated. Long-haulers say they might appear to be getting better before things take a turn or a new symptom surfaces, or they may cycle through different symptoms over a span of weeks. The illness has taken a significant toll on their mental health, too, with many long-haulers reporting symptoms of anxiety and depression.
Though long-haulers have drawn more attention in recent months—Ed Yong at The Atlantic first wrote about them back in June, and a group of patients recently met with the World Health Organization—their experiences remain underreported, at odds with the mainstream understanding of how the illness progresses and who it affects.
Many people I spoke to encountered some measure of medical gaslighting, when doctors minimized or dismissed their physiological symptoms. (One hospital that has taken up their cause is Mount Sinai in New York City, which introduced a program specifically focused on the care of long-haulers.) Countless patients who became ill in March and April were unable to get tested for the coronavirus and never got a positive test result, which further complicated their access to care; others got conflicting test results or false negatives when they finally did get tested.
That’s why thousands of long-haulers have found a lifeline in support groups on Facebook like Survivor Corps, as well as a Slack group started by the queer wellness collective Body Politic that has about 8,000 active members (and many thousands more who recovered and left the group). A patient-led team of researchers in the Body Politic group has put out one of the few surveys that comprehensively documents long-term COVID-19 symptoms, as well as an analysis of how stigma has contributed to a lack of healthcare support for long-haulers. The researchers are now working on a follow-up survey that will dig into the mental health fallout and antibody testing results.
As Yong wrote recently, estimates from other countries indicate there could be hundreds of thousands of long-haulers in the U.S., and it’s not just adequate medical care that eludes them. For countless long-haulers, it has been impossible to work normally while navigating a difficult, uncertain recovery and the dizzying costs of their medical care.
How employers have responded
A major hurdle for long-haulers is that so many companies are still unfamiliar with their prognosis. Many of them have faced resistance or were shown the door when it became clear to employers that their recovery would exceed two weeks.
“I’m seeing people who worked salaried positions, took a certain amount of paid time off, and then are struggling to get more paid time off from their employers,” says Fiona Lowenstein, the 26-year-old founder of Body Politic, who started the Slack support group after she got sick with COVID-19. “Some of these people reached out to me in April and May saying, ‘Do you have any articles on the existence of long-haul COVID that I could send to my employer? Because they don’t believe that it’s taking more than two weeks for me to get over this since I wasn’t hospitalized.'” For gig workers like Lowenstein, paid time off wasn’t even an option.
Melanie Montano, COVID-19 long-hauler
It was like this fire within my body. It felt like I was being poked with hot cinders.”
When Melanie Montano got sick, her doctor dismissed it because she didn’t fit the profile. (Montano is just 32, and her symptoms took hold in mid-March, when the pervasive belief was that young people were unlikely to get seriously ill from COVID-19.)
“I lost my sense of smell and taste, and it took over 100 days to get it back,” Montano says. “It was like this fire within my body. It felt like I was being poked with hot cinders.” She was an adjunct writing professor at the time, and her employer expected her to continue working remotely since her doctor wouldn’t confirm her diagnosis. Montano tried teaching remotely but found that she simply couldn’t keep up. “I became alarmed,” she says. “I told them, ‘The students are not benefiting. I’m not giving them any of myself because I’m not there presently. I need time off.’ They thought I was being dramatic.”
Montano kept pressing the issue with her doctor, and eventually she was able to get tested. While waiting for her results, she was hospitalized because she couldn’t breathe on her own. “It was only when I took a picture in the hospital and sent it to one of my co-workers,” she says, “[that] they were like, ‘Oh, she is sick.'” Based on the guidance at the time, her employer granted 14 days off. “I think they doubted that I was actually as sick as I was,” Montano says. “So after 14 days, I just said, ‘I can’t give you a time frame of when I’ll be up and at ’em.'” She was let go soon after.
As weeks of illness stretch into months, long-haulers have lost their jobs or had no option but to stop working, leaving them in a precarious financial state. Montano hasn’t been able to work at all since she was let go. “I ended up having to move into my mom’s apartment, so that helped alleviate having to pay rent,” she says. “But I’ve pretty much almost depleted my savings at this point.”
Angela Shearer, a healthcare worker, lost her job of 14 years after she got sick. “My employer was supportive for a while,” she says. “But in July, they decided they had to fill my position.” Shearer, 47, was able to secure short-term disability, but her coverage has since run out and she’s now seeking long-term disability. “I feel devastated by what I lost because I worked really hard for a really long time for the position that I’m in,” she says. “And yet, I’m still one of the lucky ones because I had been there for a while, and I still can get some type of disability [benefits].”
Candace Taylor, COVID-19 long-hauler
There have been too many of us in the COVID support groups losing benefits, and some have been pressured to return to work when unable to function normally.”
In the meantime, she has gotten virtually no financial support, being unable to access unemployment benefits or short-term disability, and she isn’t sure how much longer she’ll be able to pay rent. “I don’t think employers understand the long-term effects,” Taylor says. “There have been too many of us in the COVID support groups losing benefits, and some have been pressured to return to work when unable to function normally.”
What accommodations long-haulers need
Some long-haulers have recovered enough to work remotely or even go into a physical office, but often their ability to work hinges on their employer’s willingness to provide accommodations. The best-case scenario for patients facing a protracted and unpredictable recovery is remote work or part-time employment, according to disability lawyer Gary Phelan, who is representing multiple COVID-19 patients seeking accommodations.
Of course, as Phelan is quick to point out, not everyone can work remotely. But the long-haulers I spoke to who are trying to work say they’re looking into remote roles as a more permanent solution. Jeanette Deschene, 35, who works in a clinic, is temporarily able to work remotely in her existing job, but she’s already looking at other roles in her organization that will allow remote work long term. For Deschene and others, lingering fevers also pose an issue if they have to clear a temperature check to return to an office. (There still isn’t medical consensus on whether long-haulers remain contagious while their symptoms persist.)
For those still dealing with more severe fatigue, flexible hours or part-time work could be more feasible. Margot Gage, a 38-year-old assistant professor at Lamar University in Beaumont, Texas, got sick in March, early in the semester. Before getting COVID-19, Gage hadn’t so much as broken a bone; now she feels like she has run a marathon if she exerts herself even slightly. To finish out her class for the semester, she relied heavily on teaching assistants, and she took a step back from her research over the summer.
But Gage knew she wouldn’t be able to teach again come fall, when she wouldn’t have any assistance. So she negotiated a new agreement with her employer, one that would allow her to work at her own pace. “COVID took my health, and I was really upset that it would also take my work from me,” she says. “If I [hadn’t been] persistent, I wouldn’t be in this situation. My employer is happy with this agreement, and I am as well. They heard the message that they need to get creative.”
Still, Gage notes that the workers who are most vulnerable—those who may not be in support groups or have access to benefits, let alone the ability to negotiate with an employer—are not being covered by the media. “If a cleaning woman [is] suffering from COVID long term but she has to go clean, which is a physical thing, I can imagine she’s trying to push through it,” she says. “I think there’s a lot of people who have no other choice because they can’t put food on the table otherwise.”
Disability law is complex, and one challenge for most long-haulers is that they can’t legally qualify for accommodations that would empower them to keep working without proving they’re up for the job. “Disability is defined differently in different contexts,” Phelan says. “To be protected under the Americans with Disabilities Act (ADA), you still have to show that even with an accommodation, you’re able to perform the essential functions of the job. Whereas [with] short-term or long-term disability, it’s almost the opposite, where you have to show you’re unable to work—or you don’t qualify for benefits.” For long-haulers who are still battling severe symptoms, the latter might be their only option.
Phelan has tried to make a case for why the Equal Employment Opportunity Commission (EEOC) should, in fact, recognize COVID-19 as a potential disability under the ADA, much the way it classifies cancer and epilepsy. (The EEOC still evaluates disability cases on an individual basis, Phelan says, since all of these conditions—like COVID-19—can affect people differently.) The lack of guidance has also made it easier for insurance companies to deny coverage for long-term disability.
But not everyone agrees that COVID-19 should be treated as a disability. And it’s unlikely the EEOC will offer such guidance until cases “percolate to the point where courts are addressing it,” Phelan says. “We’re at least a year or two away from seeing court decisions that will say whether or not COVID-19 is a disability.” Until then, long-haulers may continue to be subject to the whims of their employers and insurance companies.
Some of them worry about the stigma of being an employee marked by COVID, perhaps for the foreseeable future. “That is my biggest fear—not being able to work like normal or have people take me seriously,” Montano says. “‘Is she going to be physically capable of handling this workload? Is she going to need extra attention? Can we afford to have her on board if she’s not able to comply with all her duties?'”
Now that she feels up to it, Montano is looking into part-time and contract gigs. But she’s still mulling how much she should divulge about her condition. “I do think it’s important—not to use it as an excuse, but to be perfectly honest in relaying my story,” she says. “Because if I lie about it, and then they expect me to take on all these responsibilities, I look worse [than if] I’m honest from the jump. So I’m contemplating how to navigate that on my cover letters.”
Montano urges employers to think about how they want to be perceived, too, as long-haulers gain prominence and the country braces for another potential spike in cases. “We were just the first wave,” she says. “Be prepared that this is something that may very well impact your business [and] also your reputation. If you’re someone that comes out defiantly, adamantly against hiring someone who has had COVID, that’s going to be an issue.”