Cold weather is brutal for Wendi Taylor. After living with long Covid for two years, she knows that when the temperature drops, the pain and discomfort increases. This is especially true because of the severe arthritis in her hands, which only developed following her initial Covid-19 infection.
Taylor, who lives in Houston and is among the estimated millions of Americans living with long Covid, says that doing dishes during cold weather is probably the hardest part about living in the makeshift cabin she built from tarps and an 8×8 metal pop-up awning frame she found in the garbage.
“I heat water on the stove, but when it’s below freezing, it cools down quickly, and contact with the water causes extreme pain in my hands,” says Taylor. “It feels like being burned and smashed with a sledgehammer at the same time, and takes a long time for the pain to stop. Even just going outside can cause my hands to turn red and swell and have pain like that. It has made me curl up on my bed and cry more than once.”
At the foot of her twin mattress, atop a small table, sits a small green camping stove she uses both to cook and heat her 64-square-foot living space. A row of plastic storage cabinets is situated at the head of her bed. “Arranging it this way leaves room in the center to sit in a folding chair, or stand up to change clothes, or set groceries down when I come in from the store,” Taylor explains.
After riding out last year’s historic ice storm — which left at least 246 Texas residents dead — in a previous camp, when Taylor found out about the major winter storm at the beginning of this month, she went in prepared. She reinforced the tarps that function as the walls of her cabin, and ensured that the poles of its frame were firmly anchored into the ground.
One of Taylor’s biggest concerns this time was having the propane she needed to operate her stove. “Power outages matter little to me, but ‘they’ will buy all the propane if their electric heat goes off,” Taylor, 41, tells Rolling Stone, referring to housed individuals. “This is one of the biggest issues we face: Supplies we depend on daily become unavailable when they’re hoarded for emergencies.”
Fortunately, 2022’s storm ended up being far less severe than the one in 2021. Instead of having to go weeks without propane, stores near Taylor’s camp in Houston were restocked within days. “That made it far easier to stay warm,” she explains. “I could just hole up inside and avoid opening the door at all, for the most part.”
This isn’t what Taylor’s life was like prior to Covid-19. In fact, things were starting to look up during the first week of March 2020. She was working steadily as a day laborer in construction and landscaping in the Houston area, and was living in an extended-stay motel, saving up to get an apartment. “I was one paycheck away from being able to do so when I got sick,” Taylor says, noting that her first Covid-19 symptoms (a sore throat, fever, and hacking cough) began on March 7.
Although Taylor still felt run-down weeks later, she wasn’t initially alarmed by her lengthy convalescence: After all, it took her several months to recover after she contracted the H1N1 flu in 2009. “I figured this would be the same kind of thing,” she says. “Lots of comparisons were being made to that pandemic.” But nearly two years later, Taylor is still sick.
“One day I saw a list of ‘common’ long Covid symptoms that numbered over 200 — and I’ve had most of them,” she says, noting that like many people living with long Covid, her symptoms are neither consistent nor constant, varying in combination and intensity over days and weeks.
And while fatigue, rashes, and neurocognitive issues are among her most persistent and disruptive symptoms, it’s the severe, sudden-onset arthritis that makes coping with daily life the hardest. “Because my hands are particularly affected, I had to learn new ways of doing simple tasks like tying my shoes or buttoning clothes,” she explains. “And since [getting Covid], I haven’t been able to work for more than a day or two at a time.”
Without an income, Taylor had no choice but to move out of the motel and into a tent behind the dumpster of the local doughnut shop. She estimates that over the course of the spring and summer of 2020 she stayed in at least two-dozen different places, ranging from a cardboard box to friends’ couches to motel rooms.
By the fall of 2020, the constant moving was too much for Taylor, so she built the first of her longer-term camps. “At that point, my neurological symptoms were getting progressively worse and, in retrospect, I think I was subconsciously building a place to die,” she says.
Taylor has spent the past year living in her makeshift cabin under a sprawling oak tree on a dead-end street near the Astrodome. “I’m basically a hermit these days,” she says. “Covid trashed my immune system, so I mostly keep to myself and stay at my camp as much as possible.”
But Taylor is one of many people whose Covid-19 infection morphed into a chronic illness that unraveled their lives: first taking their health, then their financial stability. For some, the multiple burdens of living with long Covid resulted in losing their housing. And for at least one person, long Covid was the first in a series of events that ended in their death.
“We are only beginning to scratch the surface of [understanding] the effects of long Covid on folks’ financial well-being — including their housing security, or lack thereof,” says Megan Ranney, M.D., the associate dean for strategy and innovation at Brown University, and co-leader of the School of Public Health’s Long Covid Initiative. “Unfortunately, for much of America, living with long Covid is enough to put folks over the edge financially, with very limited safety nets.”
One thing we do know about long Covid is that it encompasses a wide range of symptoms and severity. So while some people living with long Covid are able to continue working without a problem, others — especially those with physically demanding gig-economy jobs — don’t have that option.
“Our country does not do a great job of supporting people in ways that allow them to continue to work and take care of their families while living with chronic medical conditions,” Ranney explains. “There’s obviously a knock-on effect: If you can’t work and can’t get disability, at some point you’re going to lose your house.”
Last August, in a Missouri state park about an hour north of Kansas City, Amanda Finley was starting a campfire, getting ready to heat a frozen meal for a late dinner, when her phone buzzed around 9 p.m. It was a text from her friend Ashlee Bryant, who went by Jake. “I’m about to break,” he wrote. “Broke, homeless, I weigh 92 lbs, in more pain than I thought was possible. My life’s ruined.”
Though she was keenly aware of the severity of his condition, this update hit Finley hard. They had both been living with long Covid for more than a year, but his health began to rapidly decline when he developed pneumonia in May 2021, and spent most of the month on a ventilator. His clothing — purchased when he was at his normal weight of 170 pounds — no longer fit his emaciated frame. “It was like watching a train wreck in very slow motion,” Finley says. “And this was preventable.”
Less than three weeks after sending that text, Bryant died in a Beaumont, Texas, hospital at the age of 40, with his fiancee, Carrie Savage, by his side.
“One day I saw a list of over 200 ‘common’ long Covid symptoms — and I’ve had most of them.”
“It wasn’t supposed to be like this,” Savage, 40, tells Rolling Stone. “That day [he died] he told me he wasn’t ready to leave me. We were supposed to spend the rest of our lives together. I hate Covid. I hate what it took from me.”
Prior to the pandemic, Bryant and Savage were living in a comfortable two-bedroom trailer in Vidor, Texas. He worked as a bartender, and took side jobs installing flooring. She worked as a server at a local restaurant. When he wasn’t on the clock, Bryant always managed to find people who needed help — whether it was a neighbor whose car wouldn’t start, or communities on the Gulf Coast cleaning up after the most recent hurricane. Savage often joined him. “Jake was very active, and liked fishing,” Savage says. “He always had this goofy-ass smile on his face, and loved making people laugh. Anybody who met him liked him.”
Then in March 2020, Bryant and Savage both lost their jobs. A month later, Bryant tested positive for Covid-19. Initially, they lived off their unemployment benefits and savings, but by October 2020, they could no longer pay their rent. To make ends meet, Bryant worked odd jobs in construction, and they took out a small loan on their car. That still wasn’t quite enough, so they both did some landscaping work in Louisiana — that is, until Bryant contracted Covid again in November 2020. And this case was more severe than his first.
With Bryant now physically unable to work, and no money for rent, he and Savage moved out of their trailer and into their car — a 20-year-old four-door Chevy Impala — at the end of November. “Jake would say things like, ‘You know, it’s not going to be that bad,’ because he was always trying to be optimistic,” says Savage. “Every time I felt like we had no options, he would always say, ‘It’ll work out somehow.’”
But by Jan. 1, 2021, Bryant had developed pneumonia and his health began declining fast. ”Having to stay in our car — that’s what really made him go downhill,” Savage explains. “Last year, Texas had a very hardcore winter. And it just happened to happen when we were staying in our freaking car. I could not believe how cold it got.”
With Bryant’s health worsening, and some financial help from family and friends, the couple lived in a series of hotels from mid-February until they received some long-overdue unemployment back-payments in April. “We also had a little help that allowed us to get into housing again,” Savage notes, “but by April, Jake was in very, very bad shape.”
Prior to the pandemic, Nathan Barse was a preschool teacher in Seattle. But after Covid-19 infections in March and November 2020 left him with long Covid — including debilitating exhaustion, pain and pressure in his ears, and constant tinnitus — he no longer had the stamina required to return to teaching. Unable to pay his rent in Seattle, Barse moved back to his home state of Idaho, and has been staying with different friends and family members until they tell him that it’s time to move on. “I have until the first of March to find a place to live,” Barse, 45, tells Rolling Stone. “So again, [I’m] on the verge of being homeless.”
And though Barse is eager to find at least part-time work, he’s concerned that his lack of endurance and frequent long-Covid symptom relapses may make it difficult, or even impossible, to hold onto a job. “I have a lot of anxiety about that,” he says. “One of my worst fears is that I will go through the effort of getting a job, and end up liking it just in time to get sick again with Covid or another relapse, be out of work for a week or two, and then get fired from a job that I actually wanted.”
Others living with long Covid share Barse’s concerns about returning to work — also questioning whether they have the stamina to make it through a day at the office, and worried about living up to their manager’s expectations. And it doesn’t help that it’s still unclear how employers will handle requests for reasonable accommodations through the Americans with Disabilities Act (ADA).
Although long Covid can qualify as a disability under the ADA, the application of the law 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,” Elizabeth Pendo, JD, a professor of law at St. Louis University and an expert on employment-and-disability law, told Rolling Stone in October.
But if the challenges people living with other chronic conditions — like myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), fibromyalgia, and chronic lyme disease — have faced attempting to get workplace accommodations are any indication, those living with long Covid are in for a bumpy ride. “The disability system in this country has been slowly eroding for a long time now,” says Emily Taylor, vice president of advocacy and community engagement for #SolveME — a research and advocacy organization focused on ME/CFS and other long-term chronic illnesses — and a senior staffer at the Long Covid Alliance. “I, as an ME/CFS advocate, want to apologize to all the long-Covid folks and say, ‘If we had made more progress, you would be in a better place right now.’ ”
“One of my worst fears is that I will go through the effort of getting a job just in time to get sick again.”
Unaccommodating employers aside, the underlying problem is that people with long Covid and other chronic conditions have no choice but to navigate a system that wasn’t designed to include them. “Some of the [existing] disability structures have been helpful, but the challenge is kind of like a square-peg-round-hole situation,” she explains. “You’re trying to squeeze a person with ME/CFS, long Covid, or other invisible illnesses into the disability holes that are defined for people with more visible disabilities.”
And with an estimated 56 percent of Americans living paycheck to paycheck, and 47 percent having no formal savings plan, experiencing a loss of income without personal or social safety nets can be financially devastating. This is especially evident among workers in the gig economy.
While it’s unclear exactly how many Americans depend on these short-term contracts and/or freelance jobs to make a living, according to a December 2021 report from MBO Partners, the overall number of independent workers increased by 34 percent during the first year of the pandemic, jumping from 38.2 million in 2020 to 51.1 million in 2021.
Those numbers didn’t include Bryant’s friend Amanda Finley, who made the decision to stop taking delivery-gig jobs after she got Covid-19 in March 2020. “I know this was a personal choice, but I thought, ‘Oh, my god, I can’t work if I’m dead, [or] if I get something else on top of this,’ ” she explains. “Plus, I didn’t know how long I’d be contagious, and I wasn’t going to give [Covid-19] to someone else.”
An anthropologist with training in archeology — and a former life as an opera singer with the St. Louis Symphony Orchestra — Finley, 45, tried to find a way to make a living without exposing herself, or anyone else, to Covid. “I started teaching online STEM classes for kids, but it wasn’t enough,” she says. “And this really gets to the crux of why long Covid has impacted so many people: When you are working in a gig position, you don’t have benefits. You work, or you go homeless and you go hungry. It’s almost predatory the way that we rely on these people to literally put their lives on the line.”
Researchers have come to similar conclusions about the gig economy. For example, a paper published in JAMA Cardiology in February 2022 argues that working in the gig economy should be considered a social determinant of health. Along the same lines, a report by the Robert Wood Johnson Foundation and the Urban Institute, also published this month, found that because gig workers lack the benefits and protections associated with traditional full-time jobs, it could put their health and well-being — as well as their family’s — at risk.
This was the case for Finley, who lost her home on July 31, 2020. “It wasn’t an eviction,” Finley explains. “They didn’t renew my lease. And there’s no way you can fight that: It’s the end of a business contract.” She temporarily moved into a friend’s basement, and continued to bounce between friends’ houses until May 2021, when she got Covid for the second time. At that point, she was staying with a friend who had four children — all unvaccinated — and grew increasingly fearful of getting sick again, or making anyone else sick. That’s when Finley started camping as much as possible.
By August 2021, she was camping full time, living in a tent at Weston Bend State Park. Finley had been going on camping trips there for 26 years, and refers to the park — with its sweeping views of the Missouri River — as her “happy place.” “Even though [moving into a tent] sounds like a rather ridiculous option, I just couldn’t keep getting sick again and again,” she explains. “I didn’t want anybody breathing my air. And actually, I quite like camping. I’ll gladly take the turkeys over the humans.”
But as the leaves turned, so did Finley’s health. “It just got too cold,” she says. “It started snowing in October, and by the end of the month I had pneumonia again. And that’s when the campground’s bathrooms are locked until they open again in the spring. It got to the point where camping was no longer a feasible option.”
So starting in November, Finley embarked on another leg of her tour of friends’ couches, spare rooms, and basements, while applying for spots in different apartments. But if it gets to the point where she no longer thinks this living arrangement is safe, she hasn’t ruled out a return to her tent. “If I had to, I would,” she says. “I would polarize up, but what a terrible choice: Do I freeze to death? Or do I get Covid again?”
For the past eight years, Bilal Qizilbash of Jackson, Mississippi, has served free hot meals to local residents in need through his nonprofit organization R U Hungry? Working primarily with unhoused individuals, Qizilbash has seen the toll the Covid-19 pandemic has had on the community — including those now living with long Covid. In addition to the usual barriers to health care, most unhoused people have no evidence of their initial Covid infection.
“That’s where it gets a little challenging,” says Qizilbash, who is living with long Covid himself. “A lot of homeless people are experiencing long-Covid symptoms, but no one’s taking them seriously because they don’t have insurance or proof of infection. Several of them told me that they went to get tested but were turned away because they couldn’t pay.”
On occasion, Qizilbash will notice that unhoused individuals living with long Covid or other illnesses stop showing up for the meals he serves each Friday, and it can be hard not to assume the worst. “They’re basically the invisible people,” he tells Rolling Stone. “When you’re poor and you don’t really have a track record, you just go missing. And no one’s going to notice unless you’ve left the state or you end up dying on the streets and someone finds your body.”
That feeling of invisibility is something Taylor has experienced firsthand, as a result of both living with long Covid and being unhoused. “Medical care for long Covid is nearly nonexistent, and symptoms are often dismissed as mental illness,” she explains. “Medical care for the homeless is also nearly nonexistent, and homelessness itself is too often treated as a mental illness.”
When unhoused individuals do have the chance to see a doctor, instead of appropriate medical attention and care, Taylor says, they’re given an unsolicited, uninformed lecture. “We’re told to try harder, patronizingly ‘educated,’ referred to mental health services, and given unhelpful advice to make lifestyle changes — which are often the result rather than the cause of our position,” she explains. “And then, when all that fails? [We’re] written off as choosing to be in this situation.”
Bryant’s attempts to get medical care in Texas were also futile. Though his health got progressively worse throughout 2021, Savage says that the doctors wouldn’t take him seriously — especially when he said he had long Covid. “Every time he went to the doctor, he’d have to explain why he was there,” she recalls. “It was so frustrating. Couldn’t they look at his records and see that it was something he had been dealing with for the past year? But since it was a 40-year-old guy coming in, they’d just assume it was another [opioid] overdose.”
When Bryant came in with severe pneumonia — or, in one case, carbon-monoxide poisoning — the hospital would keep him overnight and release him the following day. “He didn’t have insurance, so he didn’t matter,” Savage says. “They could have taken better care of him. They had every opportunity. But I feel like unless you’re an unborn fetus, they don’t give a shit about you.”
While Medicaid would eventually become an option for Bryant, in order to be eligible for coverage in Texas, he first had to qualify for disability benefits: a process Savage knew would take several months. “I wonder all the time, if we had moved, would Jake still be here? Could I have gotten him better care?” she says. “I know at least in West Virginia, there are a lot of poor people, and that if you’re poor, they take care of you. But you can’t be poor in Texas. If you’re poor in Texas, you have no worth.”
For Savage, Bryant’s last few months were a blur, between caring for him both in and out of the hospital, dealing with dismissive doctors, and trying to scrape together the money to buy a few days’ worth of his medication at a time — or whatever she was able to afford. And after back-to-back bouts of double pneumonia, “his lungs filled up with so much fluid that it started getting hard on his heart, and he went into heart failure,” she explains.
Bryant died before sunrise on Sept. 4, 2021. Later that day, Savage got the call saying he was approved for disability benefits.
Living with long Covid while dealing with housing insecurity is a “vicious cycle,” says Taylor. “The most mundane daily tasks you take for granted — like washing your face or drinking a glass of water — become major chores when you are homeless, requiring effort and planning,” she says. “This is completely at odds with the need to rest and pace yourself [when living with long Covid]. You are constantly forced to push yourself too hard, which makes you sicker, which makes it even more difficult just to exist, which causes you to have to push yourself even harder. And it’s never enough.”
While it’s no secret that the American health care system is broken, many people are still unable to let go of the toxic “bootstrapping” mentality: that anyone who works hard enough and sufficiently contributes to society is able to access the medical care they need.
And, in addition to the disbelief that people living with long Covid continue to face from those who don’t acknowledge they’re actually sick, people who are also unhoused have to deal with endless judgment from others questioning how it’s possible to end up in that position when there are places like shelters, food banks, and free clinics providing assistance.
“Unless you’re an unborn fetus, they don’t give a shit about you.”
“You’re constantly bombarded by advice to go to a shelter — which, even in the best of circumstances, can’t adequately meet the needs of people living with long Covid,” Taylor says. This is especially true for people like Taylor and Finley, who are immunocompromised. Crowded indoor spaces — including tightly packed rows of occupied cots in emergency shelters — put them at high risk of contracting another illness, and therefore are not a viable option.
Finley has received similarly well-intentioned but misguided unsolicited advice from people who think that there are an abundance of safety nets in place for someone in her position, which are easily accessible and adequately meet their needs. “People think all these resources are available,” she says. “And yes, there are some, but they’re also very strapped. Everyone is hurting right now.”
She also points to Bryant’s death as an example of what can happen when long Covid leads to a loss of income, then housing. “It was a snowball effect from lack of access to health care [and] lack of access to basic necessities,” Finley says. “People just assume, ‘Oh, you can go to a shelter and get that.’ Well, if it were that easy, he wouldn’t be dead.”
The continued lack of understanding and awareness of the devastating and wide-reaching impacts of long Covid is why Savage decided to share her and Bryant’s story. “I don’t want anyone to have to go through what we did,” she explains. “And I want people to know that long Covid is real, and it’s changing a lot about people’s lives. Sometimes, it’s so overwhelming that you can’t bounce back from it, especially when it all comes at once. You can lose your job, your health, your sanity, your social life — and your dignity.”
And though there’s still a lot to learn about what causes long Covid and how to treat it, Ranney says that those currently living with it need — and deserve — support right now. “We can’t wait for all the information to be accumulated [from studies] before we do something to help people who are experiencing its financial impact,” she says. “And it’s going to require some leadership on the part of the government, insurers, and forward-thinking employers to get there.”
In the meantime, Taylor is working through a list of life goals she made before the pandemic, then adjusted to reflect the realities of living with long Covid. Despite everything that’s happened since she first made that list, she’s still on track for accomplishing her goal of building good credit. “But the best credit score in the world is useless if you have no income and are unable to work,” she says.
More than anything else, Taylor knows that what happens next will largely depend on her health. “I want to have a place to live, a car to drive,” she says. “I want to work. I want to live. Getting well — or at least knowing what’s wrong with me so it can be managed — is step one.”