Careers Lost to Long COVID

Many young people at the start of their job pathways have been sidelined by lingering symptoms. Employers have been slow to offer accommodations.

Katie Blair, 35, sitting on the couch in her childhood living room in Wenatchee, Washington, wearing a sweatshirt that features her cat, Dolly Parton, and dog, Jolene. Taken on January 3, 2023. Photo by Emily Sauchelli.

Before she got COVID-19, Katie Blair used to call herself “a tumbleweed traveler.” She held jobs in many industries–excursions manager of a cruise line, kindergarten director, executive assistant for a beauty brand, sommelier–and traveled for work to exotic places like Honolulu and Daegu, South Korea.

Blair now spends her time dog sitting, writing, and volunteering at a local nonprofit organization, Action Health Partners. She started dog sitting in the summer of 2022 as a way to bring routine and structure back into her life. At the time, it was the only kind of work she had found that accommodated her fatigue, weakness, and new seizure disorder.

In early March 2020, at age 32, as the COVID-19 epidemic was just hitting North America, Blair started to feel that she wasn’t herself while working and living in midtown Manhattan. Around the same time, she was let go of her full time job in the hospitality industry because she couldn’t keep up with the responsibilities that the job required due to health issues. Blair also had a part time job working weekends at Vinvero, a wine store in the Lower East Side. She thought that transitioning to full time status at Vinvero would help her to be independent and stay in New York. At Vinvero, she did every kind of job there was – selling wine, loading wine into the cellar, cashier, delivery person. Unfortunately, three weeks later, around March 22, 2020, she had to quit because she became too sick to work.

For Blair, COVID-19 began with loss of taste and smell and a fever that led to hallucinations about family members who had passed away and family pets from her childhood. She couldn’t keep food or liquids down. She had a persistent cough. She had depression. Blair did not get an official positive COVID diagnosis, but received a positive antibody test in April 2020. After a week, two weeks, a month, instead of going away her symptoms were getting worse and morphing into other kinds of problems — difficulty breathing, post-exertional malaise, severe fatigue and physical instability. Long COVID was barely a diagnosis at the time, it was so new. But for Blair and an estimated 10 million other Americans, this condition, a long-term follow-on to what for others was a brief infection, has been permanently life changing.

Katie Blair, age 35, posing with her duck cane by her writing nook. This room has many special past memories for Blair. Taken at Blair’s childhood home in Wenatchee, Washington. Taken on January 4, 2023. Photo by Emily Sauchelli.

Blair's orange-billed duck cane has been with her since the very beginning. The cane has helped her tremendously and helps her to lead a Taken at Blair's childhood home in Wenatchee, Washington. Taken on January 6, 2023. Photo by Emily Sauchelli.

Katie Blair, age 35, at Linden Tree Park on the Columbia River in Wenatchee, Washington. Blair has lots of memories at this park and comes here to reflect on her experiences. She often finds this a place that allows her to get some exercise and find peace of mind. Taken on January 4, 2023. Photo by Emily Sauchelli.

Katie Blair, 35, at a physical therapy session. She is seen working on strengthening her core, as she relies on a cane as a walking aide since she can't walk independently. Taken at Confluence Health in Wenatchee, Washington. Taken on January 5, 2023. Photo by Emily Sauchelli.

Katie Blair, 35, at a physical therapy session with a PT assistant [left] and her physical therapist, Trisha Self, DPT [right] at Confluence Health in Wenatchee, Washington. Taken on January 5, 2023. Photo by Emily Sauchelli.

Long COVID is keeping four million people out of work, according to an August 2022 report from the Brookings Institution, a Washington D.C. think tank. And for young people like Blair, the illness can upend what would normally be their most productive period of career building.

Long COVID can be defined as symptoms that persist at least four weeks after the initial COVID-19 infection, according to the CDC and there is no timetable as to when–or if– the symptoms will go away. It is associated with a host of symptoms that can affect all, or some of the systems of the human body, including the brain. People can suffer with long COVID for weeks, months or years. The impact on people’s work lives can be severe.

“Symptoms that are related to long COVID are extreme exhaustion,” said Mia Ives-Rublee, the director of the disability initiative at The Center for American Progress. “So, they may not have the energy. Concentration is also impacted, as is memory. Confusion could also be a factor. All these factors can make it more difficult for a younger individual to stay competitive in school and in the workplace.”

Realizing That Life Had Changed

Blair sheltered in her apartment for two months after leaving her job at Vinvero on March 22, 2020. “March, April, May, I was so sick — I couldn't do anything,” she said. “It took me three weeks in May to pack my bedroom because I didn't have the energy to do it.”

At first, she couldn’t come to terms with the fact that she needed to go home to her parents and close family.

“It took me a few months to get the courage to leave because I didn't want to fail,” she said. “I didn't want to go back home. But, man, was it the best thing that has ever happened to me.”

On May 26, 2020, she left New York City and decided to drive back to her hometown of Wenatchee, Washington. She did not want to get on a plane due to the fear of getting re-infected with the virus by being in close quarters with travelers.

She made it home to Wenatchee, Washington on June 5, 2020. While spending almost a month at home, her symptoms were not as intense as they were in prior months, so Blair decided to move to Seattle in July to try living on her own again.

Once in Seattle, she spent time trying to apply for jobs in the recruiting space, as her symptoms were “still pretty miserable” and included chills, fever, and even diarrhea. They were, however, not as bad as what she was experiencing while in New York. Because she thought she was getting better, she decided to go out to be at her best friend’s wedding as a bridesmaid on July 25 in Chelan, Washington, almost four hours from Seattle.

“I hadn’t been around people at all,” she said. “This was my first try. The panic attack happened when I was asked to take my mask off for a picture.”

By October, and up until early January 2021, her severe symptoms returned. This included depression, food intolerances, a 50 lb weight loss, Postural orthostatic tachycardia syndrome and significant menstruation irregularities to name a few issues. Blair dealt with being alone until January 2021 due in part to her pride and that her parents were still working full time and she was afraid of catching germs. After realizing she could barely move and was falling and passing out, she finally put her pride aside and went home. It was clear she wouldn't be able to return to the hospitality industry.

She decided to start the process for being on disability because she wanted to eradicate financial stress and on December 14, 2021, Blair was approved for disability benefits from Medicare.

“It's the biggest gift I've ever been given and I definitely don't take it lightly because I recognize how hard it is for others to get on it, …” she said. When she was 17, Blair started dog sitting for her best friend’s mom, Leslie. Leslie would become one of Blair’s advocates in trying to get her to feel more independent come Summer 2022.

“It was her idea,” Blair says of Leslie. “Thinking that she would love to pay me, she would love to give me independence, she would love to stack the fridge with food I like and so it started so easy and gentle with Leslie kind of guiding the way. Then all I did as far as advertising this I would just post pictures of me on social media with the dog. And then I would have people directly messaging me asking "Oh, are you dog sitting and yeah, it just kind of spiraled from there.”

Blair says dog sitting provides her with a way to still make connections with people and do something productive, as she can’t work in a full-time role. She does not charge her clients for her services as a dog sitter, but only asks for a donation to the local humane society.

Her symptoms have been so severe that she wasn’t able to walk the dogs. She was only able to let them outside in the backyards. But her condition has been improving. Starting in July 2023, she has been incorporating dog walking into her dog sitting routine.

“It depends on the dog,” she said. “If the dog doesn't pull … It takes a certain kind of dog. So I still blankly say ‘No, I don't walk dogs,’ but then once I meet the dog, I make exceptions if I know they're not going to pull me, if they are chill.”

Her symptoms still include memory loss, fatigue, bowel issues, overall body pain, anxiety, dizziness and back problems. She relies heavily on her orange-billed duck wooden cane to get around as she also needs the support of a walking-aide. But, the number of doctor appointments she goes to has shrunk considerably. She also is able to withstand walking a mile — with her cane in hand and taking breaks — which takes her around 30 to 35 minutes.

Blair, 35, walking with her duck cane outside in the snow in her backyard in Wenatchee, Washington. Taken on January 4, 2023. Photo by Emily Sauchelli.

Blair, 35, loves animals, especially her rescue dog Jolene. Her psychiatrist recommended she get a dog because her long-covid symptoms were affecting her mental health. Taken on January 4, 2023. Photo by Emily Sauchelli.

Blair, 35, smiling with Jolene by a playground in her backyard in Wenatchee, Washington. Taken on January 4, 2023. Photo by Emily Sauchelli.

Living at Home with Parents and Can’t Be Independent

Rose Friedman — a 27-year-old with long COVID who is living with her parents in Midwood, Brooklyn — says having long COVID makes her feel old. Friedman was in a contract role at a boutique residential interior design firm when she got diagnosed with COVID-19.

“I didn’t think this is where I would be,” Friedman says. “It’s taken me a lot of time to come to terms with the fact that I can’t be independent.”

Like Blair, Friedman contracted COVID-19 In March 2020 before there were any vaccines. She was diagnosed with COVID-19 by her doctor over the phone, and got a positive antibody test in June of that same year.

Friedman graduated from Pratt Institute in 2019 with a bachelor's degree in interior design. From the time she was 8-years-old, she always knew she wanted to be an architect or interior designer. Friedman was able to maintain her work pace for about a year, because her office was closed from the end of March [2020] until July [2020 which is when she was recovering from her acute infection. And when it opened back up, she was on a flexible schedule due to her contract role., But she ultimately got sicker and had to make a change.

“While it was very stressful to keep up, they were flexible with me taking time off being sick, going to doctors — I would make up work on the weekends/evenings to stay on top of things, mostly working lying down as my condition worsened until around April 2021, when things began to decline more rapidly. I was not able to physically withstand it as [the job] made me permanently sicker.”

She stopped working in a full time contract capacity in April 2021, and decided to become part-time with decreased hours up until June 2021, but that proved to be a difficult task as well. She stopped working altogether in June 2021, as she decided it was the better choice to focus on her health. During this time she was experiencing severe pain throughout her body, fatigue, brain fog, and even cognitive decline. She did however, make an attempt to work on a few freelance projects in September 2022, when she was feeling a bit improved, but that in itself was also a challenging feat.

Since June 2021, Friedman has been using her life savings to get by, and only paying for her cell phone and medical bills. Her parents have been able to assist her financially as well. The reason why she decided to leave the workplace is because she is unable to physically and mentally handle the schedule and deadline-driven tasks that a full-time role in this industry entails due to the unpredictability of her symptoms and the need to make doctor’s appointments and medical services a priority.

“I would work all day trying to hit a deadline and then I would just kind of collapse afterwards,” she said. “It just wasn't sustainable.”

Rose Friedman, 26, lying down in her childhood bedroom in Midwood, Brooklyn. This is the only way she can sleep — on her side in the fetal position — due to enormous pain experienced by long-covid. Taken on April 26, 2023. Photo by Emily Sauchelli.

The Toll of Long COVID on the Job

For example, her previous role relied heavily on using 3D design drafting software such as Revit. Having memory loss and neurocognitive issues, her brain is unable to recognize how to use Revit successfully like she once had. She considers herself an expert in the software pre-COVID, as she says she was good at rendering. She says Revit is a mix of math design and designing three dimensionally, so there were times that she says she would be slower and sluggish in viewing designs three dimensionally.

There were tasks relating to Revit that were second nature to her —before COVID and long COVID — that she had trouble performing once she got sick.

“We were doing some technical training to get some custom furniture made for somebody,” she said. “I remember that I had a brain fart where I forgot that 60 inches and five feet were the same thing. And I think we may have been 72 [inches] and basically I forgot a foot and a few inches of a calculation …”

Even writing for work-related tasks was a challenge when she got sick.

“I had a lot of trouble writing and stringing together sentences and there was a point where I was supposed to update the company newsletter and I remember being in tears because I couldn't make the words come together and I felt so stupid because I had done this before,” she said.

Friedman is concerned about how this decision to leave the workforce will affect her future.

“I worry about where I am going to be career wise,” she says. “… Let’s say I’m able to return to work in a couple years from now — I'll be in my late twenties — I don’t know if I will have the stamina to work as hard as I would need to have worked for an entry level job. I’ll also be almost thirty and working a job kind of back when I was 23 and I was sick and just behind in so many things …”

Friedman spends each day navigating her health from her childhood bedroom in her parent’s Midwood colonial home. Entering her bedroom in April 2023, Friedman looked exhausted surrounded by piles and piles of medical supplies and equipment. She said one of the things that she holds dear during this time of her life is what she calls her “rescue cart.” This is a cart that is next to her bed that has everything she might need if she has an emergency — such as uncontrollable vomiting which can occur anytime, day or night and is unpredictable.

Simple things like walking for long periods of time is something that she isn't able to do as well as have a typical social life.

“I used to walk a lot,” she said. “ … Walking was just a big part of my day. I would like to replace a bus on the way home from work, ... with a 30 minute walk, no matter what the weather was, because I enjoyed it. It was a way for me to decompress. And now, I can barely walk down the block.”

Seeing friends in person and socializing is still difficult for Rose on a physical level.

“I can’t sit and talk to friends for a few hours, like I used to be able to,” she said. “I have to lay down and take breaks and stuff.”

Due to her being immunocompromised, Rose also has to be careful about how she interacts with people on a daily basis, in order to protect her health, so right now she is happy with seeing friends virtually.

Friedman’s freedoms have been severely limited due to having long COVID. She has been diagnosed with a multitude of debilitating conditions — postural orthostatic tachycardia syndrome, Mast cell activation syndrome, myalgic encephalomyelitis/chronic fatigue syndrome, dysautonomia, peripheral neuropathy. These conditions have the following symptoms, many of which Rose is experiencing — nerve damage, chronic pain in her joints and muscles, headaches, brain fog, allergies, skin rashes, and cognitive issues. She also has an EpiPen in her room in case she goes into anaphylaxis shock. That is a rare occurrence but has happened to her a few times. All these conditions combined leave her extremely fatigued and unable to participate in activities she used to enjoy — like going to rock and heavy metal shows.

“I miss concerts,” she said. “I used to go in the summer, I would go to, on average, a concert every week.”

“I actually bought a number of tickets in advance,” she said. “Back in 2020, [shows] kept getting postponed. I had to sell like a bunch of them [tickets] because I couldn't go to the shows.”

Rose was such a committed concert goer — she is a fan of Foofighters, Def Leppard, Pretty Reckless, The Mountain Goats to name a few — that even when she broke her foot in 2018, she would stand in the crowds of the Slayer farewell tour on her broken foot and push herself because she loved the atmosphere so much. She adds that “it's almost like people would have understood if I had decided to sit down for the concert when I broke my foot but wouldn't get it for long COVID.”

On the occasion that she has some energy, she decides to put that energy towards painting. The room that’s next to her bedroom has become a makeshift studio, where Rose has been able to be creative and practice self-expression. To her, the paintings represent her illness challenges, such as brain fog, memory loss and fatigue.

Paintings by Rose Friedman, 26, demonstrating artistic interpretations of long-covid.
Taken in Midwood, Brooklyn on April 26, 2023. Photo by Emily Sauchelli. — Paintings by Rose Friedman, 26, demonstrating artistic interpretations of long-covid. Taken in Midwood, Brooklyn on April 26, 2023. Photo by Emily Sauchelli.

When not in the studio painting, Rose has a strict schedule when monitoring her array of health conditions. This includes using a variety of at-home treatments from her doctors. In order to help with the symptoms from POTS, she uses what she calls her “boots,” to help her increase her circulation in her feet. Postural orthostatic tachycardia syndrome is a group of disorders that involves orthostatic intolerance — which is when there is a reduced volume of blood that returns to the heart after someone sits up from a lying down position, according to the National Institute of Neurological Diseases and Stroke.

Due to having POTS, Friedman gets blood pooling in her feet. Having compression boots as an at-home treatment helps to push the blood up from her feet and allows for improved circulation.

Friedman also uses a Transcutaneous Electrical Nerve Stimulation TENS unit as another form of treatment she can do at home in her bedroom that is for helping with pain she experiences daily.

“It contracts the muscles,” she says. “For me it helps with pain. The electric signals get in the way of pain, and for me when it’s along the same muscle it helps with muscle spasms. It is like you are getting a massage.”

Every three weeks, Friedman also goes to the hospital to get an Intravenous Immunoglobulin (IVIG) infusion which takes six hours as well as iron infusions. Her autoantibody levels pre-IVIG were attacking her collagen and causing debilitating joint pain. These infusions help with lowering her autoantibody levels, and therefore she has less pain.

With all these conditions looming over Rose, she is conflicted as to if she sees herself ever “working” in the traditional sense again due to how much time she has to dedicate to her health.

“The illness has changed me so much that if I did get better tomorrow, I don't know if I would walk back into my old life as it was,” she says. “I think because I've spent so much time in the medical space and also advocacy spaces and things like that.”

However, she does miss her job and has the innate yearning to want to go back to work if she didn’t have to handle a long list of debilitating health conditions.

Friedman uses red light as a way to decrease inflammation in her joints. Taken in Midwood, Brooklyn on April 26, 2023. Photo by Emily Sauchelli.

Friedman uses her boots as a way to circulate blood flow back into her upper extremities. Taken in Midwood, Brooklyn on April 26, 2023. Photo by Emily Sauchelli.

Friedman uses the Transcutaneous Electrical Nerve Stimulation (TENS) unit as another form of at home treatment, which is aimed at massaging her muscles. Taken in Midwood, Brooklyn on April 26, 2023. Photo by Emily Sauchelli.

Friedman uses a nebulizer when she has trouble breathing and needs oxygen. It is another form of at home treatment she has in case of an emergency. Taken in Midwood, Brooklyn on April 26, 2023. Photo by Emily Sauchelli.

What To Know About Accommodations and How To Find Resources

There are people living with long COVID — Rose Friedman for example — who wish they could re-enter the workforce. There are others — Katie Blair for example — who have found a new path, and are at peace with their decision to leave the traditional American work environment. For those who have long COVID and are interested in entering the workforce with accommodations, there are federally-funded organizations that are helping employers to understand how they could accommodate employees with long COVID. The Job Accommodation Network, also known as JAN, is a free service under the Department of Labor’s Office of Disability Employment Policy — otherwise known as ODEP. The Employer Assistance and Resource Network on Disability Inclusion — also known as EARN — is another agency that is funded by ODEP under a cooperative agreement with Cornell University’s Yang-Tan Institute on Employment and Disability.

JAN and EARN have authored a report called, Supporting Employees with Long COVID: A Guide for Employers. This report outlines hypothetical scenarios in the form of questions asked by the employer to the experts — which helps guide employers to answers for how to accommodate their workers with long COVID. Some topics covered include, how to start the conversation about accommodations with an employee, how to support an employee who has requested 100% telework due to long COVID, and how to give consideration to valuable employees who would benefit from upskilling/reskilling to other vacant positions within a company, to name a few.

Ives-Rublee says younger people who have long COVID — and are simultaneously early in their careers — will be negatively impacted when it comes to opportunities to work.

“I think without particular intervention, the outcomes are likely not going to be great,” Ives-Rublee said. “Even if they do eventually get better, they are already starting on a bad foot. So, they are already starting behind because they are individuals who may not be able to go to school or finish school on time. There are individuals who may not be able to be competitive in internships and thus might have more difficulty getting long term career types of jobs …”

Ives-Rublee says at the moment “there is no estimation” available as to how many employers in the United States are actually providing accommodations to young people with long COVID in the workplace.

“We should be to the point where if somebody asks for an accommodation and it's not something superficial, then they should get that accommodation without having to submit a ton of paperwork for it,” she said.

She says that proving a disability is even harder for people with long COVID for many reasons — testing has been and is inconsistent horrible so people who have symptoms of long COVID are not getting access to testing that can prove the origin that they were COVID positive and the symptoms are a new phenomenon so doctors may not know exactly what they are dealing with, which makes it harder for a person to have the correct paperwork for accommodations.

She adds, “if you want to work, you should be able to, and that should be available to you.”

In approaching a ranch house with Katie Blair and her father Dale in January 2023, to check on a dog in the neighborhood of Wenatchee, Washington, Blair’s face lit up when she saw Gigi, — a white dog with brown patches and a curly fluffy tail — and vice versa. As Katie was getting the key to open the door, Gigi came scratching at the door whining with excitement to see who was on the other side. Blair’s responsibility included checking on Gigi's well-being, making sure to give treats and water, and also have food in Gigi’s bowl. Blair also lets each dog outside to do their business and play around. Blair and each of the dogs she watches seem to have a symbiotic relationship — meaning they both benefit from being in each other’s presence.

“My body likes to act up and my mind likes to confuse me and make me think that I'll never get better or I'll never follow my dreams or this and that but I've been proving that wrong every day.” Blair said.