When Patricia Anderson got COVID-19 at the very start of the pandemic, she was lucky in a sense. She never went to the hospital, despite her body temperature dropping to 93 degrees. In March 2020, many patients were told not to seek emergency care unless they had a fever of 104 degrees or higher. COVID-19 was a newly emerging threat and at the time, there were few avenues of treatment.
While the worst of the symptoms eventually faded, Anderson never really got better. She is one of the estimated 7 to 23 million Americans with long COVID — a condition which can encompass symptoms such as respiratory distress, cough, “brain fog,” fatigue, and malaise, that last 12 weeks or longer after initial infection.
These ongoing symptoms, and resulting impairments, are a long term challenge as both employers and workers navigate an ever-mutating virus.
The Centers for Disease Control and Prevention found that one in five COVID survivors younger than 65 experienced at least one incident that might be related to previous COVID-19 infection. Among those 65 and older, the rate was one in four. Their data also show that nearly three times as many people age 50 to 59 currently have long COVID than those 80 or older.
Experts believe that older cohorts may have more resistance thanks to a higher proportion being fully vaccinated and boosted; younger cohorts may not be as protected. Post-COVID conditions are found more often in people who had severe illness, but anyone who has been infected can experience these conditions, even those with mild or asymptomatic COVID-19.
One of the challenges in diagnosing long COVID is that there is no diagnostic test and symptoms may also be due to other underlying health problems.
However, an analysis from the nonprofit Solve ME/CFS Initiative, which supports research into diagnostics, treatments, and cures for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), long COVID and other post-infection diseases, estimates that long COVID affects 10% to 30% of those who were infected; and over half of patients experience lingering symptoms six months after initial infection.
Millions could have this disease for their lifetime.
Fatigue is the most common symptom reported (80%), followed by post-exertion malaise (72%) and brain fog (58%), according to the organization.
Related: ‘This isn’t just gonna go away’: Long COVID is crashing the retirement hopes of many Americans
Working through virus symptoms
Despite her battle with the ongoing effects of the virus, Anderson, an emerging technologies specialist at the University of Michigan, never really stopped working. “I was worried about not having enough sick leave,” she said.
Her son has autism and she needed to be there as his caregiver. But, constant fatigue and an inability to walk more than a handful of steps before needing to rest took a toll on her mental health as well. “I was a very physically active person, I was a high achiever, I walked everywhere.”
Another major challenge was the ongoing brain fog, which Anderson said she finally started coming out of in December 2021, after about 20 months of struggling with seemingly simple tasks like completing full sentences.
“When it was the worst, I did not realize how bad it was. I wasn’t capable of understanding so much,” she said. “One of the scarier times was when I wasn’t able to remember my son’s name.”
Anderson has been fortunate enough to be able to work full time from home during the pandemic; she’s able to take breaks and rest when the extreme tiredness or cognitive issues interfere with her work. But the University of Michigan now wants employees back in their offices.
And that’s tough for the 65-year-old, who has blogged about her two-plus year ordeal.
Anderson has recovered enough to take the bus to work one day a week. Her immediate supervisors have been very understanding, and have made accommodations, like allowing her to take breaks or lay down.
“It’s not that brain fog doesn’t happen anymore. But I’ve learned the things that I need to do, like take short breaks whether or not I feel tired, and I have learned the warning signs,” she explained. But she’s not yet ready to return in-person full time.
More: Study finds long COVID is costing Americans about $170 billion a year in lost wages
Employers are flying blind
Anderson knows she’s more fortunate than many other employees. The nature of her job allows her to still work from home and management is willing to work with her. Many people don’t have those options.
At the same time, employers are trying to understand what they need to do to care for individuals with long COVID, whether it’s benefit programs, disability management, paid leave, or short term disability, according to Bryon Bass, a senior vice president of disability and absence management at Sedgewick Corporation, one of the largest third-party administrators of employee benefits.
Ways employers can support workers with long COVID
- Continue to offer teleworking options
- Create more flexible work schedules
- Include more breaks and rest periods
- Designate a break or “quiet room” on premises
- Use ergonomic tools to help with tasks like heavy lifting or exertion
“There are no standards, there are no protocols and people are just really struggling to understand what they can do and what they should be doing,” he said.
The number of disabled individuals due to long COVID could potentially be catastrophic for some industries. Anywhere from seven to 14 million U.S. workers could have symptoms so severe that they’re going to be disabled from their job in some form, Bass said.
Related: Report finds Americans with long COVID losing billions in wages
Defining disability
Currently, individuals with long COVID must be accommodated under the Americans with Disabilities Act (ADA) according to the Department of Health and Human Services, “if it substantially limited one or more major life activities.”
Additionally, guidance from the Equal Employment Opportunity Commission reinforces that long COVID should be considered as a disability under ADA definitions: actual physical or mental impairment which substantially limit a major life activity; a history or record of an actual disability (such as cancer that is in remission); or regarded as an individual with a disability by the employer.
One caveat: not every impairment will constitute a disability under the ADA. The ADA uses a case-by-case approach to determine if an applicant or employee meets any one of the three above definitions of disability.
Despite very real disabilities, those with long COVID are not currently eligible to apply for Social Security Disability benefits, which by definition requires someone to be unable to work in any occupation due to a condition that will last at least a year.
Helping employers cope
There are a lot of people who may not have been clinically diagnosed with COVID-19 but have long COVID symptoms, said Terri Rhodes, CEO of the Disability Management Employer Coalition.
The organization has established a think tank which includes medical experts, government officials and absence and disability management professionals to discuss the challenges to both employers and employees.
The goal is to educate employers and the insurance community about long COVID and provide some guidelines on how employers can accommodate workers and what laws they need to be aware of.
“We’re trying to make sure that employers don’t just get stuck into thinking that there has to be some definitive diagnosis, because a lot of times it doesn’t exist,” said Rhodes. “And that’s what a lot of us are struggling with.” She predicted this disease will result in a major shift in how disability is managed in the U.S.
In addition to managing workers like Anderson who have the ability to work remotely, employers must also learn to accommodate everyone from CEOs and CFOs who have lost some critical thinking and decision-making abilities to line workers who require frequent breaks for post-exercise malaise and fatigue.
In some ways, it’s similar to how an employer might accommodate a person with Parkinson’s disease or ALS, but may now be dealing with dozens, or even hundreds of people at a time.
“We have to think differently about how we’ve been providing accommodations, especially for individuals in manufacturing and service and retail environments.” said Bass. “How do we provide an inclusive environment for them, so that they can continue to be productive, continue to work, continue to contribute and do all of the things that we naturally want to do?”
A link to Alzheimer’s
When book editor and writer Jane Isay, now 83, contracted a mild case of COVID in January 2021, brain fog was a constant companion. She had trouble writing more than a sentence or two at a time. It could take her a full week to write a one-page letter. “It was like I’d never written anything before,” she said. While her clients and colleagues were understanding, Isay felt she was letting them down.
Due to her age, many around her suspected the start of dementia. “I knew in my gut it wasn’t Alzheimer’s,” Isay said. “What I did know is that I wasn’t as sharp as I had been and that something was missing. I was very sad.”
Finally, in May, 2022, the fog began to lift. “I didn’t know what I had lost until I found it again,” she said. Isay is now back to writing and editing and is working on her next book, albeit a little more slowly than before.
A link between long COVID and Alzheimer’s disease is a real concern for employers, according to Bass. Researchers at the Cleveland Clinic found an overlap between COVID-19 and brain changes common in Alzheimer’s. Other studies have found similar results, raising questions about whether some long-COVID sufferers may be at higher risk for Alzheimer’s disease (AD) or other neurodegenerative diseases over time.
The number of people with Alzheimer’s disease was already projected to increase, due to the sheer size of the aging baby boom population. Now researchers are concerned that this number may skew much higher due to the lingering effects from long COVID.
As scientists struggle to understand the long-term consequences of this virus, employees and employers are struggling to navigate the nuances of laws like the ADA the Family and Medical Leave Act.
Employers and employees will have to work together to find solutions that work for everyone, according to Rhodes. Long COVID is not just a health issue, it’s also ultimately a workforce issue. It’s one that significantly affects older workers, which can be devastating on many levels, since health insurance is so often tied to employment. It’s uncharted territory, requiring good communication, a willingness to be flexible, and teamwork.
Take matters into your own hands
Below are links to additional resources related to this story.
New York-based journalist Liz Seegert has spent more than 30 years reporting and writing about health and general news topics for print, digital and broadcast media. Her primary beats currently include aging, boomers, social determinants of health and health policy. She is topic editor on aging for the Association of Health Care Journalists. Her work has appeared in numerous media outlets, including Consumer Reports, AARP.com, Medical Economics, the Los Angeles Times and The Hartford Courant.
This article is reprinted by permission from NextAvenue.org, © 2022 Twin Cities Public Television, Inc. All rights reserved.
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