It’s been almost a year since Mae Smith got COVID-19, and she still experiences symptoms including crushing fatigue and a brain fog that makes it hard to think.
Smith was a policy director for a New York City social service agency when she first contracted COVID-19, and continued working despite lingering flulike symptoms last summer. Then she got rapidly worse in the fall.
“I got migraines every single day. That’s when the brain fog started,” she said. “Then it just got way, way too hard.” She took time off from her job, thinking her leave would last a month. It has since turned into three.
Smith is one of the many people with long COVID, those who survived the acute initial illness of COVID-19 but have persistent ongoing symptoms such as fatigue, shortness of breath, brain fog and heart palpitations. The WHO noted these patients feel “stigmatized and unable to access and navigate services … They report difficulties in being taken seriously and achieving a diagnosis.” And the disease can be utterly debilitating when it comes to work.
The exact number of people with long COVID, also known as long-haul COVID, is unknown. One in five people experience persistent ill health following the acute phase of infection, according an estimate by the U.K.’s Office of National Statistics. A study published in the journal Lancet in January reported that a majority of 1,733 patients who were temporarily hospitalized in China with COVID-19 still experienced fatigue six months later.
Here’s what long COVID patients wish their employers, colleagues and clients knew about the condition.
Although symptoms aren’t always visible, they are very real.
The severity of long COVID is misunderstood, said Kyli, a New York City-based grants manager who got a mild case of COVID last February and asked not to be fully named for fear of jeopardizing her disability leave.
“I was able to work for quite a while after getting out of the hospital when I started having long COVID,” she said. “And then I had a relapse in January with worse symptoms and new neurological and cardiovascular symptoms.”
As a result of long COVID, Kyli now has trouble reading and writing; talking for longer than 30 minutes leaves her confused, exhausted and short of breath. “Often when you read about it, it sounds like working with a headache or working and being a little bit tired,” Kyli said. “But really, at times it feels like I’m working on an 18th-century ship in the dark in a storm.”
“All my colleagues were like, ‘We never would have known that you were going through this.’”
– Mae Smith
Smith said there was a lack of awareness about the existence of long COVID at her job last summer and fall, though that has since changed. “I had to send a lot of articles to my supervisor,” she said.
Her job became remote, and she said that she could present as healthy in video meetings, even when she was not. Smith experiences myalgic encephalomyelitis (ME/CFS), also known as chronic fatigue syndrome, and postural orthostatic tachycardia syndrome (POTS), which causes her heart rate to skyrocket when she stands up.
“All my colleagues were like, ‘We never would have known that you were going through this,’ because on a screen I can talk [as normal]. I can have energy for a little while,” Smith said. “But with ME/CFS, and POTS, I’ll crash. Pacing is a big thing.” After long calls, she needs to lay down for a half-hour to recover.
Smith said she hopes to get well enough to return back to work, but she’s not sure how much better she will get. Her doctor recommended that she not go back to full-time work right now.
“It’s become more indefinite, even for my doctors,” she said.
People may need coping strategies to continue working.
Tara Anne, a former tour manager who uses her first and middle names professionally, thought she had allergies when she began feeling sick last March in Los Angeles. Three days later, “I was at Cedars-Sinai hospital with pneumonia in a military tent in a parking lot,” she said.
“I have to work a hundred times harder to do the most basic things.”
– Tara Anne
Almost a year after Tara Anne’s diagnosis, she is still experiencing neurological symptoms while running her new business coordinating COVID compliance for film and TV sets.
“Things will just go out of my mind. I will forget entire conversations. I have problems with word retrieval right now,” she said. “I didn’t have those problems pre-COVID, even when working in really stressful situations. Even when sleep-deprived.”
To combat memory loss, Tara Anne set up multiple systems designed to reinforce her recall when managing large amounts of information.
“I take copious amounts of notes when I’m on phone calls, and I always have an assistant on the phone with me so they can reinforce the information I may have missed,” she said. “I have two whiteboards in front of me that I have to use at all times.”
Tara Anne said the decision to become self-employed and start her own COVID-19 compliance business stemmed from her need to pivot away from the touring industry and to avoid having to answer to a boss who would prioritize business over safety.
“I just didn’t want to ever place anyone in a position where the safest thing wasn’t being done,” she said. “I spent so many days thinking I was dying, and I would never want to put anyone in that position.“
Tara Anne said she sometimes discloses her condition to clients as a way to prove the stakes. “I like to remind people there’s consequences to behaviors, and if we don’t do things that are in the best interest of public health, people suffer.”
Despite having long COVID, she said, “I’m one of the very lucky ones. I have so many issues, but I still feel like I’m high-functioning enough that I can do my job.”
Navigating the bureaucracy of employer policies and disability benefits is a full-time job in itself.
“What we really need is a nationwide response just like we did for the coverage for having time off while you have acute COVID.”
– Mae Smith
Smith said neither employer nor federal policies have caught up to the reality of having long COVID. She didn’t use up the two weeks of federally mandated paid sick leave allowed for COVID-19, and when she asked her human resources department if it was possible to use that leave for long COVID, she was told it was reserved only for acute cases.
“What we really need is a nationwide response, just like we did for the coverage for having time off while you have acute COVID,” Smith said.
Smith ended up using all of her vacation and sick leave before going on unpaid, job-protected leave through the Family and Medical Leave Act. But her time off is not restful as she worries about mounting medical bills while not drawing a salary.
“I have breakdowns about it all the time. I have savings right now, so it’s fine, but when it’s indefinite, I can’t do it forever,” Smith said.
Countries including Spain, France, Germany, Belgium and Denmark have recognized long COVID as an “occupational disease,” granting protections and compensation to some workers who contract the illness at work. The United States has not.
Smith is still weighing what to do when her FMLA leave runs out. She does not qualify for short-term disability through her employer, and the option for long-term disability will not be available until she has been out of work for six months. She is hoping to go back to her job part-time with accommodations, but recognizes that long-term disability through her employer and the federal government may be her best option.
To be eligible for disability benefits administered by the Social Security Administration — either Social Security Disability Insurance or Supplemental Security Income — a person must have a medical condition that is expected to last at least one year or result in death. Applying can be notoriously a time-consuming process, and most people are likely to have their initial disability benefits claim denied.
“Social Security and SSI are particularly important for people with preexisting health conditions, people of color, and many older workers who are more likely than ever to lack savings or private insurance to fall back on if they acquire a severe, life-changing disability,” wrote U.S. Reps. John Larson (D-Conn.) and Danny Davis (D-Ill.) in a June letter to the agency. “We hope you will agree that now is the time for SSA to begin preparing to properly evaluate the long-term effects of COVID-19.”
In a statement to HuffPost, the Social Security Administration said its “current disability policy rules are able to evaluate COVID-19 cases” but that “researchers are still learning about the disease and we will continue to look at our policies as research evolves.”
“Each email clarifying a policy, each phone call I make to insurance to understand a policy … I really am disabled now, so it really does take a toll. It means I won’t be able to take a shower that night, I won’t have the energy.”
And in the meantime, professionals with long COVID are using up limited energy to deal with the bureaucracy of getting medical appointments and applying for leave and disability benefits.
Smith said she feels the need to stay on top of everything and be her own patient advocate, but exerting that energy comes at a cost. “There’s a part of me that is always worried that if I do more, I’m going to make it more chronic and I’m never going to recover,” she said.
Kyli said those behind employer policies don’t understand the mental and physical cost that navigating their systems creates.
“Each email clarifying a policy, each phone call I make to insurance to understand a policy, every single tiny little thing is –– I really am disabled now, so it really does take a toll,” Kyli said. “It means I won’t be able to take a shower that night, I won’t have the energy. Or I won’t be able to call my family that week because I’ll have to sleep. It all adds up in a way that I’m sure most people don’t expect.“
Kyli recommends getting help from friends or family to place the phone calls necessary to navigate all the bureaucracy, and said there is no way she could be doing it on her own.
“You see one doctor, they give you three tests to do, there’s a problem with the insurance on some of those tests. They find out something from a test that means you should take a medication, the insurance denies the medication, you fight the insurance, you find a coupon for the medication,” Kyli said. “It certainly doesn’t feel like I’m not working.”