'I'm 29 years old and I feel like I'm 70': Long COVID patients continue to struggle for months, years

A year after the government formally began studying long COVID, millions still struggle to get back to work, battle with bureaucrats and employers about their disabilities, and need financial help.

Jeremy Smith got sick in October 2020, but it wasn't serious. A stuffy nose. A cough. The proverbial cold-like symptoms of a mild COVID-19 infection, and it passed within a few days.

But he never really got better. Instead, he got worse. Fatigue. Nerve pain. Blood-pressure fluctuations. A brain that fritzes out every so often, leaving him unsure where he's supposed to be or what he's supposed to be doing. Returning to his pre-infection job of helping surgeons in the operating room is out of the question.

After multiple doctors' visits and experimental treatments, Smith, at last, has a diagnosis: long COVID, a condition in which remnants of the virus wreak havoc on a survivors' body. A year after the federal government formally began studying the impacts of long COVID, millions of Americans like Smith are still struggling to get back to work, battling with bureaucrats and employers about their newfound disabilities, and trying to secure financial help as the fast-moving omicron variant is infecting a new surge of Americans.

The ongoing crisis has plagued workers, their families and employers across the country as they cope with a condition that is now formally recognized as a disability but remains vaguely understood, even as the CDC says people who have gotten sick can return to work within a week.

"I'm 29 years old and I feel like I'm 70," said Smith, who lives in Atlanta. "We are alive, but not living. And most of our lab work and testing comes back clean, but we are super sick, and doctors tell us we are crazy."

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Experts say potentially tens of millions of Americans face consequences of long COVID, although exactly how many remains unclear. A recent study conducted in the United Kingdom — where health records are electronic and centralized — found that nearly 40% of people who tested positive for COVID-19 had at least one symptom that persisted up to six months post-infection.

Symptoms for "long haulers" can include fatigue and anxiety, brain fog, joint or chest pain, unexplained changes in blood pressure, dizziness, diarrhea and nausea.

"That's the big fear, that this will become the world's largest mass-disabling event," Smith said.

Jeremy Smith grimaces from a hospital bed in Georgia before a procedure to examine brain swelling caused by his long COVID.

Omicron infecting millions

The world is reporting about 20 million cases per week, or 33 cases every second, and although the omicron variant appears to be milder, many long COVID patients, including Smith, point out their infections were also mild.

"What we're seeing is that people with more chronic effects can't return to their usual function," said Amitava Banerjee of the Institute of Health Informatics at University College in London, who runs a long COVID treatment clinic. "If you're not able to work from home, that's a concern. What do you do when you have to go in?"

Experts also remain puzzled by data seemingly showing that proportionally fewer Latino, Native or Black Americans are being diagnosed with long COVID, despite data showing the pandemic hit those groups harder than their white counterparts. Banerjee said he worries those groups simply aren't getting care for their long-haul symptoms, a reflection of the United States' longstanding inequity in health care access.

"For long COVID, part of the issue is that there's just not enough research and data," Banerjee said. "These are really deep problems, and this is going to last for years. Even if the pandemic stopped tomorrow, we'll have people with chronic symptoms for months."

Physical Therapist Katherine Morin, left, works on Adam Bodony during a physical therapy session Tuesday, Aug. 17, 2021 at IU Health North Hospital in Carmel, Indiana. He developed persistent symptoms after a bout with COVID in 2020. He was not sick enough to be hospitalized at the time of his acute infection, but since having COVID, he has had a series of health conditions, many of them connected to what an IU Health doctor ascribed to long COVID.

Health experts say long COVID poses a particularly significant risk to frontline essential employees, such as hospital cleaning staff and meatpacking workers, because those are groups least likely to have good health insurance, paid sick time or savings accounts to let them recuperate. Labor experts say the U.S. labor force today has about 2.3 million fewer workers than pre-pandemic, and long COVID experts say they expect some of those people are long-haulers struggling to recover.

Essential workers on the front lines

"You're talking about people who were out in the middle in the pandemic, putting themselves at risk," said Carri Chan, a professor at New York City's Columbia Business School, where she studies health care decisions, risk and operations. "We need to acknowledge and rethink the policies in how we accommodate people who are suffering from this. There are a lot of inequities that are continuing to grow, and there isn't an easy solution."

Dr. Kathleen Bell, who runs a long COVID clinic in Texas, said most of her patients have seen at least four and sometimes as many as eight doctors and specialists by the time they reach her, which tells her most of the people she's seeing are those with the time and money to pursue a diagnosis.

Edward Williams, 62, a resident at the Hebrew Home at Riverdale, N.Y., receives a COVID-19 booster shot.

"We know that a lot of people with English as a second language, gig workers, people without insurance, they are not able to come to see us," said Bell, who runs the COVID Recover program at the University of Texas Southwestern Medical Center in Dallas. "Even for people who can get to safety-net hospitals, the hospitals are swamped."

Bell said she's heard from patients that many employers seem unwilling to provide job accommodations, even though the federal government as of this summer recognizes long COVID as diagnosis, and sufferers are entitled to disability protection. She said many employers, especially those offering physical, low-wage jobs, just don't want to deal with a vague diagnosis and hard-to-see symptoms.

Accommodations could include things like more frequent rest breaks or reassignment to a desk job. Workers whose needs cannot be accommodated can often get short-term disability, although that depends on the workplace and state. More permanent disability compensation can be paid by the federal government, although that's a longer, more challenging process requiring significantly more documentation, experts said. It's also not available to people living in the United States without proper documentation.

Long COVID now considered a disability

A spokesman for the Social Security Administration confirmed that long COVID can now be considered as part of a disability claim, but was unable to provide specifics about how many people have applied. Under current federal rules, a person must have a medical condition or combination of conditions that prevent them working for at least a year to qualify for Social Security Disability Insurance or Supplemental Security Income.

Physical Therapist Katherine Morin, left, works on Adam Bodony during a physical therapy session Tuesday, Aug. 17, 2021 at IU Health North Hospital. He developed persistent symptoms after a bout with COVID in 2020. He was not sick enough to be hospitalized at the time of his acute infection, but since having COVID, he has had a series of health conditions, many of them connected to what an IU Health doctor ascribed to long COVID.

"One of the big problems we see is that employers are saying if you can't come back at 100% then you can't come back," Bell said. "And if you have long COVID, you can't give them a great timeline of when you'll be better. If you break a leg, you know it's going to be between 6 and 12 weeks to recover, until you can be weight-bearing. With long COVID, it's harder. If you drive a bus, if you're a dock loader or you work in a grocery store, it gets dicey asking an employer for a four-hour shift or being able to work every other day."

In Illinois, leaders of the Chicago-based Latino Policy Forum have been holding community forums with social workers to help connect undiagnosed long haulers with medical care and advice on how to approach their employers. But the reality is many Latinos have little in savings and work jobs without paid sick time, said CEO Sylvia Puente. She said she worries families who were already living at the poverty line and going hungry regularly are being forced to work despite being sick. 

And faced with concerns about being deported or being barred from U.S. citizenship for accepting government assistance, many Latinos are just working sick, she said.

"People sometimes think they need to suffer in silence. They think, 'I work or I don't eat,'" she said.

Kara Ariail, an employment law expert and partner at the national law firm Holland & Knight, said the government guidance has put employers on familiar legal ground, by giving long haulers the same workplace protections as other disabilities, like being deaf or blind. But she acknowledged many employers are struggling to understand what kinds of accommodations they must provide, or what kind of documentation is needed to grant employees short-term disability leave.

"What's so difficult right now is that it's all still so unclear: the degrees of impairment, the degrees of improvement," she said. "What I see is that employers want to do the right thing, but to do that, they need information. If they don't know there's a problem, how can they respond effectively? For the most part, employers want to do that, for employees to feel that they are invested in their success and their well-being."

Actress Madison Sparacello first contracted COVID-19 in April 2020 and struggled with long haul symptoms before getting reinfected in January 2021. She's working with doctors to recover.

New Orleans resident Madison Sparacello suffered long-haul symptoms after her first infection in April 2020 and got reinfected a year ago. An aspiring actress who had appeared in television shows, she now struggles to work for a little more than an hour a day at a bingo parlor. She said she's thankful for the work she has, because her $800-a-month disability claim was denied, and she's now working with new doctors who better understand her struggles.

"I was starting to live out my dreams and my world came crashing down from an illness that was only supposed to last two weeks but never left," she said. "It took a while but I finally found some great doctors that know about long COVID and actually can help."

Dismissive doctors remain a major barrier for workers trying to get a diagnosis, said Lisa McCorkell, a public-health researcher and co-founder of the long-hauler group Patient-Led Research Collaborative. But so does an American capitalist system that all-too-often writes off workers if they're no longer considered productive, she said.

"It's leading to a lot of gaslighting, to a lot of doctors throwing up their hands and saying 'this could be in your head' or just to push through the pain. And that's absolutely the worst thing you can do if you have long COVID," said McCorkell, who is also a long hauler. "It's just this massive failure of society. People want to work. People do want to contribute. But the way our society is set up, if you have any sort of additional need, it's overlooked or seen as being unable to work."

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Smith, the Atlanta-based long COVID patient, said being unable to maintain his old work schedule of long hours on his feet or in front of a computer, or flying around the country to meet with doctors, has undermined his self-worth. In most cases, he said, he simply hides his illness from people because he doesn't feel like explaining or arguing about whether COVID is real.

He's spent $25,000 on treatments, including on HIV medication doctors say helped clear virus fragments from his cells. He said he became a vegan and started routine fasts, to help "reset" his immune system. Today, he describes himself as back to about 80% of his former self, but still unable to work consistently. He's now banking on an experimental blood-cleansing treatment in Germany and has become disillusioned about not just medical care in the United States, but his fellow Americans.

"We don't get sympathy, and it's so clear: People here in Atlanta don't wear masks and they just don't care, because they don't want to sacrifice their freedom just even a little bit," he said. "They don't think my life matters. To the general public, we're just dust in the wind."

Virtua nurse Stephanie Vieux of Burlington Township, N.J., prepares a shot of the Pfizer  vaccine at the Burlington County COVID-19 Vaccine Mega-Site in Mount Laurel, N.J., on Dec. 9.