Long Covid’s Cruelest Symptom is Homelessness

Wendi Taylor finds cold weather to be extremely difficult. Two years of living with Covid for long, Taylor knows that the cold weather can cause discomfort and pain. Due to severe arthritis in her hands that developed after her first Covid-19 infection, this is particularly true.

Taylor, who resides in Houston, is one 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,”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.”

A small, green camping stove is located at the foot of her twin-sized mattress. It sits on top of a small table. At the head of her bed is a row of plastic storage cabinets. “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 At least 246 Texas residents were killed in the tragedy — in a previous camp, when Taylor found out about the major winter storm at the beginning of this month, she went in prepared. She strengthened the tarps she used as walls in her cabin and made sure that the poles supporting it were securely anchored to 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 years old, tells Rolling StoneRefers to individuals who are housed. “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 likePrior to Covid-19. In fact, things started to improve during the first week in March 2020. While she was employed as a day laborer in Houston’s construction and landscaping industry, she was also living in an extended-stay motel and saving for an apartment. “I was one paycheck away from being able to do so when I got sick,”Taylor stated that Taylor noticed her first Covid-19 symptoms on March 7th (a sore throat. fever. and hacking cough).

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.”Taylor is still unwell nearly two decades later.

“One day I saw a list of ‘common’ long Covid symptoms that numbered over 200 — and I’ve had most of them,”She said that her symptoms, like those of many others with long Covid, are not consistent or constant and can vary in intensity and combination over the course of 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.”

Taylor was without an income and had to leave the motel in order to live in a tent next to the dumpster at the local donut 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.

Taylor realized that Taylor was tired of constant moving by the fall 2020 and built her first longer-term camp. “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 last year living in a makeshift house under an oak tree on a dead-end road 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.”

Taylor is just one example of many who’ve had their Covid-19 infection turn into a chronic illness. It first affected their health and then their financial stability. Some people have lost their housing because of the multiple financial burdens that long Covid caused. Long Covid was for at least one individual the beginning of a series that led to 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,”” 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.”

Long Covid has many symptoms. 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 Missouri’s state parkAmanda Finley was about an hour north Kansas City when she started a campfire. She was getting ready to heat frozen meals for late dinner when her phone rang around 9:59 p.m. It was Ashlee Bryant’s text message, which she went under 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.”

Finley was not only aware of the seriousness of his condition but she was also very concerned for him. Both had lived with long Covid for over a year. But his health rapidly declined when he contracted pneumonia in May 2021. He spent the majority 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: “And this was preventable.”

Bryant, 40, died in Beaumont, Texas hospital less than three weeks after he sent that text. He was accompanied by Carrie Savage, his fiancee.

“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.”

Bryant and Savage had lived in Vidor Texas for two years before the pandemic. He was a bartender. In addition to his day job, he also worked side-jobs installing flooring. She was a waitress 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 was often there to help 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.”

Bryant and Savage lost their jobs in March 2020. Bryant was tested positive for Covid-19 one month later. They lived on their savings and unemployment benefits at first, but they couldn’t pay rent by October 2020. Bryant took on odd jobs in construction to make ends meet and also borrowed a small amount for 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. This case was even more serious than the 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.’”

Bryant was diagnosed with pneumonia on January 1, 2021. His health started to decline quickly. ”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.”

Nathan Barse existed before the pandemic.His job was as 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, Submitted Rolling StoneOctober

But what if? The challenges people living with other chronic conditions — like myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), fibromyalgia, and chronic lyme disease — have faced You are trying to find workplace accommodationIf past experiences are any indication, people with long Covid will be in for a rough ride. “The disability system in this country has been slowly eroding for a long time now,”Emily Taylor, vice-president of advocacy and community involvement #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.”

With an estimated 56 percentMany Americans live paycheck to paycheck. 47 percent do not have a formal savings planA loss of income can have financial consequences if there are no social or personal safety nets. This is particularly true for gig workers.

While it’s unclear exactly how many Americans depend on these short-term contracts and/or freelance jobs to make a living, according to aMBO Partners – December 2021 reportThe overall number of workers who are independent increased by 34 per cent during the first year after the pandemic. It jumped from 38.2 millions in 2020 to 51.1million 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 reached similar conclusions regarding the gig economy. In fact, one paper was published in JAMA CardiologyIn February 2022He argues that gig economy work should be considered a possibility. Social determinants in health. A similar vein, a Report by the Robert Wood Johnson Foundation & 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.

Finley lost her home in this manner 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.

She was living in a Weston Bend State Park tent by August 2021 and camping full-time. 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?”

The past eight years have been a great experience.Bilal Qizilbash, Jackson, Mississippi has provided hot meals for those in need through his non-profit 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. Apart from the usual obstacles to accessing health care, most people living in unhoused areas have no evidence that they had a Covid-related infection.

“That’s where it gets a little challenging,”Qizilbash, who lives with long Covid, says so. “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.”

Qizilbash may notice that some people who have long Covids or other illnesses are not showing up to the Friday meals. It can be difficult to believe 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.”

Taylor experienced this feeling of invisibility firsthand after both living with long Covid periods 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.”

Bryant would eventually be eligible for Medicaid, but it is not yet an option.Texas insurance coverage availableSavage was aware that it would take him several months to be eligible for disability benefits. “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. After back-to-back episodes 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 on Sept. 4, 2021, before sunrise. Savage received the call that he had been approved for disability benefits later in the day.

Living with long CovidHousing insecurity can be dealt with by a variety of people. “vicious cycle,”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, contributes enough to society, can get 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 of immunocompromised individuals like Taylor and Finley. 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 received similar, but uninformed, unsolicited advice from people who believed that there were many safety nets available for someone in her situation. These safety nets are easily accessible and adequate to 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: “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.”

Taylor is still working through the list of goals she had before the pandemic. The list was then modified to reflect the realities of living in a life with 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.

Taylor, more than anything else, knows that Taylor’s future will depend largely 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.”