- Long-haul COVID-19 is becoming an ever-growing concern for both the healthcare sector and the general workforce.
- An estimated 8 million people, may end up with symptoms of long COVID that could affect their ability to work.
- People are reporting hundreds of symptoms, but fatigue, brain fog, and anxiety are the most common long-hauler symptoms affecting work life.
- An increasing number of people with milder cases are also developing long COVID.
Nearly 18 months into the pandemic in the United States, a growing number of formerly healthy people are facing serious and long-term symptoms associated with long-haul COVID-19.
For many people, these symptoms are not just affecting their physical health, but their mental and financial health as many can no longer show up to their work due to long-term effects from COVID-19.
At 38 years old, Davida Wynn had never imagined she would have to give up her dream job of being a clinical nurse.
Just a few months into the pandemic, in May 2020, she contracted SARS-CoV-2 and became severely ill with COVID-19.
She ended up spending 6 weeks in a medically-induced coma on a ventilator.
When she was finally out of the hospital, she spent weeks in intensive rehabilitation, learning how to walk again.
“It was an absolute nightmare,” she said of her time battling COVID-19 in the ICU.
After leaving the hospital, she discovered that the coronavirus left lasting damage on multiple organs. Gnawing pain in her joints and muscles kept her up all night. Waves of severe fatigue prevented her from leaving her bed or couch, let alone go outside or back to work, where she might spend hours on her feet caring for patients.
Six months later, following a referral to a rheumatologist, doctors confirmed her diagnosis: long COVID, or post-acute sequelae of SARS-CoV-2 infection (PASC) as it is known in the medical community.
Wynn is just one of the millions of people impacted by long COVID-19 symptoms.
What is long COVID?
There is no universally agreed definition of long COVID yet, but researchers suspect it could be an amalgamation of syndromes rather than one major syndrome.
According to an analysis conducted by the nonprofit FAIR Health of almost 2 million health insurance claims between February 2020 and 2021, the most reported long COVID symptoms were pain, breathing difficulties, high blood pressure, high cholesterol, and fatigue.
Among the most common symptoms of
- breathing problems
- high blood pressure
- muscle weakness
- muscle and joint pain
- cognitive difficulties
- mood disturbances
It is also not uncommon for people to develop new symptoms weeks or months after COVID-19, according to the
Screenings in the United Kingdom have revealed more than 200 symptoms associated with long COVID across 10 organ systems.
Experts still do not know why the condition develops, or why some people with severe COVID-19 symptoms don’t end up with lingering symptoms and others with mild COVID-19 cases end up in a severe condition.
But more and more, experts and patient advocates are pointing out that a major crisis could be brewing.
More than 43 million people in the United States have developed COVID-19 and more than 693,000 people have died from it.
“[D]ata suggest that anywhere from 30 to 75 percent of patients will experience long COVID symptoms that can persist anywhere from 1 month to a year,” said Thomas Gut, D.O., director of the Post-COVID Recovery Center in Staten Island University Hospital, NYC.
The impact of long COVID cases on the U.S. workforce could be immense, even without considering how many people may end up becoming full-time caregivers for family members.
A new study out this week from the University of Oxford found that more than 1 in 3 people report lingering symptoms of COVID-19 up to 6 months after initially developing the disease. According to these estimates, as many as 8 million people in the workforce could have at least one long COVID symptom.
An Imperial College London study looking at a random sample of 500,000 people in the United Kingdom found that as many as 1 in 20 people in the United Kingdom may have long COVID-19 symptoms.
Health experts have been surprised to find that it’s not just severe cases like Wynn’s that result in symptoms of long COVID.
“There are countless people with mild COVID-19 cases that experience persistent long-term problems,” said Dr. Gut.
Keren Kandel, 28, who works as a director of communications and client care in Indiana, also dealt with post-COVID-19 complications for a few months. Although her case was relatively mild, she, too, saw lingering effects that affected her mental performance.
Kandel and her father got COVID-19 in January 2021 from her mother, who worked as a nurse at the hospital. Both Kandel and her mother initially had mild cases of COVID-19.
But 3 weeks after being first diagnosed, Kandel started experiencing more complicated symptoms.
“I was very fatigued. I felt very weak and tired. At the end of the second week, I developed a cough and sharp pains in my lungs. That also initiated my viral vertigo,” she told Healinggeeks.
The third week, Kandel said, was the worst because the dizziness also made her feel nauseous.
The vertigo and other related symptoms remained until May, when they started to dissipate and it became easier to function.
Melanie Hopkins, 40, is another person who is still experiencing the long-term effects of the disease. She was diagnosed with COVID-19 on October 30, 2020, when she was working as a medical support assistant.
“It was just a mild flu-like cold, I mostly experienced shortness of breath and an overall miserable feeling. [But] it was the after-effects that got me the most,” she told Healinggeeks.
For Hopkins, the real challenge, however, began months after she initially developed COVID-19.
In December 2020, her doctor ordered several tests to see how widely COVID-19 had affected her. It was then, she was told she had long COVID.
She didn’t just have shortness of breath or mild fatigue. She had both seizures and ministrokes.
“There is no clear-cut explanation for why I am having these symptoms, and they began about 6 months after having COVID-19,” she said.
These kinds of symptoms that Wynn, Kandel, and Hopkins have experienced, and their long duration now appear to be common in people with long COVID.
A survey of people with long COVID-19, which has not yet been peer-reviewed, found that symptoms such as changing/relapsing symptoms, difficulty concentrating, and memory problems affected their ability to work.
Fatigue and the so-called “brain fog” have been called particularly challenging.
An international cohort study found that long COVID caused significant disability in most people and prevented them from returning to previous levels of work by the 6-month mark.
According to Dr. Nisreen Alwan of the University of Southampton, up to 75 percent of people with long COVID say it affected their work, and 60 percent have had to take time off because of their condition.
Dr. James Jackson, psychologist and director of long-term outcomes at the ICU Recovery Center at Vanderbilt, said a significant number of people in the workforce, who had COVID-19, may be impacted by long COVID.
“I think easily one in two people in the workforce are having major problems [with long COVID]. They’re either unable to return to the workforce, or they’re in the process of trying to extract themselves from the workforce, or such. Conservatively speaking, at least half of the people we see have some major consequence they’re encountering related to work,” he said.
The brain fog directly affects both performance and productivity at work as it makes concentrating, multitasking, comprehending, and remembering difficult.
“We see a lot of problems with abilities like processing speed, and difficulties with executive functioning, which involve planning, multitasking, organizing, the sort of things that you can imagine someone engaged in business might need to do to succeed,” he said. “We know that people who have executive difficulties have problems managing money, their medication, staying on a task or job, and they have problems shifting from one task back to another. So, in our patients, we’re seeing big problems with employment outcomes.”
People with long COVID may become especially frustrated, since they experience difficulties across multiple areas of cognition.
“They don’t just have physical disability, or cognitive and mental health disability, they have it all,” said Jackson.
For Wynn, the feeling of being in a brain fog was incredibly frustrating. Known and loved by her colleagues as the “brainiac” and her problem-solving abilities, Wynn now finds herself having to read everything multiple times to make sense of it.
“To go from that to trying to find words to express myself and to have to read things two or three times just to understand what it is saying is very troubling,” she told Healinggeeks.
The length of time long-haul COVID-19 lasts and when symptoms start to improve is not the same for everyone.
There is no global consensus on the definition either.
The CDC, for example, defines long COVID as symptoms that last longer than
Estimates range from a month to over a year for the average duration of symptoms.
In the United States, a July 2020 survey found that
In the United Kingdom, the COVID Symptom Study app ZOE, which has yet to be peer-reviewed found that about 1 in 20 people are likely to experience COVID-19 symptoms lasting more than 8 weeks.
Research continues to show that people with more
Data from the United Kingdom on the prevalence of long COVID in the population seems to point to women, people ages 35 to 69, and people with another health condition or disability as a higher risk.
When analyzing the rate of occurrence by employment sector, people working in professions such as healthcare and social care have been found to be more at risk.
Many people with long COVID are now dealing with employment instability and battling financial anxiety on top of the health issues they have been experiencing for months.
“The hardest thing for me is being a shell of my former self, and I am not sure, I will ever be the same person I was before having COVID-19.”
– Melanie Hopkins, experiencing long COVID
Hopkins ended up quitting her job in April 2021 after her employer failed to implement work accommodations.
“My employer tried to accommodate as much as they could, however, my boss was unwilling to make necessary accommodations so, in the end, I was forced to quit my job because they were unable to work with me and my ongoing health issues,” said Hopkins.
Hopkins has lost hope that she will ever be able to return to work. She has since filed for social security disability, although that is also proving to be a challenge in itself.
“If I was able to return to work, I believe I would face criticism as I would automatically come in with ADA [American Disability Act] paperwork on my first day of work,” she said.
“I just want people to know that this disease is not a laughing matter or a political matter, it is real and it will affect you in ways you could never imagine. Just take the necessary precautions, and hopefully, you will not experience this disease,” added Hopkins.
In the United States, people trying to work and experiencing long COVID-19 are trying to figure out ways to handle long-term and unpredictable symptoms without losing their jobs.
The most common way people take time off in the United States is, if their jobs provide them, by using up their sick leave and remaining annual leave days before asking for accommodations or enrolling in disability plans.
At the start of the pandemic, Congress passed the Families First Coronavirus Response Act (FFCRA). It provided “wage replacement” for employees who lost their income due to an inability to work because of a qualifying COVID-19 reason.
The act also provided some emergency paid sick leave and expanded family or medical leave, but it is scheduled to end on September 30.
The United States has no mandated federal paid sick leave. For companies that have more than 50 employees, the Family and Medical Leave Act (FMLA) grants employees 12 weeks of unpaid leave. To qualify, employees must have worked 1,250 hours and been employed there for at least 12 months. This also does not include people who work part-time or as gig workers.
Earlier this year, President Biden said that people with long COVID would qualify for disability leave and payment. But that has still been difficult for people to access.
“[W]e had a couple of cases in April and May for essential workers, who were out of work. They couldn’t work because they had the diagnosis, and they weren’t getting paid. They didn’t know whether to collect unemployment, go through worker’s compensation, or collect disability,” said Wachtel and Marcolus.
However, a lot of the firm’s clients weren’t eligible for FMLA, so many people applied either for disability or unemployment benefits.
One big difference between unemployment and disability benefits is that for the former, the applicant has to show a willingness to work. But with the health effects from long COVID, many people cannot work and would have to qualify for disability instead.
Wachtel and Marcolus explained there can be serious hurdles that people with long COVID face when applying for disability.
“Unless you’re in a hospital on a ventilator, it’s difficult to prove. You really need a doctor and you’ve got to go through medical testing,” Marcolus told Healinggeeks.
Long COVID symptoms can also be very subjective and not all doctors recognize them. And even if people can prove their disability, their claims may not be heard for many months.
“I think the Social Security Disability system, which is for people who cannot work, is overtaxed already. So, [people with long COVID] are going to be waiting in line to have their cases heard,” said Wachtel.
The average length of time it takes for disability claims can widely vary. While the official federal government estimate is between 3 to 5 months, according to a 2017 Washington Post report, the national average before the start of a hearing was more than 500 days. Marcolus said that now, disability claims he’s settled have taken between 24 and 36 months.
Wynn said she feels that she’s in “a hard place” as she worries about her health and her ability to get back to her career. She said it was particularly hard because she was still so young.
In Wynn’s case, she first had to use her short-term disability days, which is not available for many people.
Then she had to use the personal days off she had accrued during her career. Only after they were finished, did long-term disability kick in, which comes with a 12-month limit.
The problem with long-term disability payment, however, is also the pay. For Wynn, she ended up with a 40 percent cut from her usual salary.
She still has not been approved for federal disability.
In contrast, having a remote job flexible in hours and an understanding employer really helped Kandel. Working on a part-time basis also aided her recovery.
Yet, she still had to power through 3 to 4 months of bouts of severe fatigue that forced her to lie down and rest every so often.
“Even though what I was doing [as a job] was not necessarily physically demanding because I was working from home, the lingering effects for several months were [challenging] when bursts of fatigue made me feel very tired without reason,” she told Healinggeeks.
Health experts are still learning about long COVID, its effects, and duration in real time. To treat the condition, doctors are taking a multipronged approach by focusing on each organ system affected separately.
“Unfortunately, since we still have very limited treatment options available for such a new disease, it is not known when people will be fully recovered,” Gut said. “Until effective treatments are found, helping and supporting individuals in the healing process is one of the ways we can speed up recovery.”
Jackson said there will be a need for mental health experts as well as experts in speech and language therapy in the U.S. healthcare system to help people with lingering symptoms. Speech therapists can be key for people who have cognitive difficulties such as those caused by long COVID.
“Speech and language pathologists are typically the people who would be the first and probably the best at treating cognitive impairment in patients engaging in cognitive rehab. [But] tending to so many of these patients, given that the demand is so great, and the resources are so few will be a challenge,” he said.
Jackson hopes that this will lead to more innovative models of treatment, and more investment in digital therapeutics.
“In the current model, there won’t remotely be enough resources to attend to all of the needs of these patients, particularly for cognitive and mental health concerns,” Jackson said. “That definitely keeps us up at night.”
Jackson has also noticed a troubling pattern of behavior towards long COVID-19 patients in his practice. He says people are quick to offer support to people who have had severe cases of COVID-19 and spent months in ICUs, but the same is not true for people with mild cases.
One place where this comes up a lot is in the workforce or on the job, said Jackson, where he sees individuals with mild COVID-19 back at work, having challenges, and getting little empathy from their employers.
“What we’ve noticed is that when people have not had very severe disease, yet they have really adverse outcomes, they don’t get that outpouring of support,” Jackson said. “That’s a real problem for the mild COVID-19 cases. Many people don’t have much empathy for their plight and are very dismissive of their difficulties.”
One of the few safe havens for people to discuss these ongoing issues and get support has been Survivor Corps, a patient advocacy group for people with long COVID. Both Hopkins and Wynn joined the online group after they started experiencing their lingering symptoms.
“I think [people with long COVID] are going to need somebody to advocate for them. If we’re able to get somebody onto workers’ compensation, they will be entitled to treatment and temporary disability benefits, permanency benefits,” added Marcolus.
Jackson said, as many survivor stories have shown, the greatest effects of long COVID are likely to be seen in the American disability system, for years to come.
“We will see how much our current disability infrastructure can manage and handle the process,” he said.
For individuals handling long COVID, the financial impact on top of the physical and mental impact can be massive.
Wynn said she has seen a position for her job advertised online, even though her employer promised to keep her position for at least a year.
Being a clinical nurse specialist working on the front lines in a dedicated COVID-19 unit and being told there was nothing more that could be done to help her was like “a slap in the face,” said Wynn.
“[Being let go and not getting government help] stung a bit. My career has been everything to me. I have been a nurse for 16 years. This is all I wanted to do since I was 6 years old.”
– Davida Wynn, experiencing long COVID
Wynn now faces one of the toughest decisions in her life. Once her savings and her retirement funds finish, she may have to sell her house to financially sustain her life.
“It is a hard pill to swallow, particularly when you have dedicated your life to helping and serving people… To even try to go back to work at this point, what employer, in their right mind, is going to say you can have every other day off or take off when you need to,” she said.