A college instructor explains her struggles with long COVID at work and why it's important to overcome the stigma of being sick

• Renee Semarge has had long COVID symptoms for a year now, and it's making work much harder.
• She's candid about her condition at work, but says a stigma persists among the workforce at large.

When Renee Semarge was in her 20s, she played blackjack to earn money for rent.

Starting with $20, she would play $3 per hand for six to eight hours, typically going home with the last $150 to $200 she needed to pay her bills, she told Insider.

It was the last time in her life that she was unemployed and said it's also the only time in her life that she really gambled.

That was a different time: in her late 20s, she was able to work herself into financial security, but more than two decades later, her situation is regressing.

It's due to the costs that Semarge, 50, has accrued from paying for "long COVID" treatments.

Long COVID is when someone with COVID-19 develops symptoms that persist for an extended period, according to the Centers for Disease Control and Prevention. The CDC says symptoms could last weeks or months, and that they can return even if they seem to go away.

Semarge, who is an assistant teaching professor at the University of Missouri in Kansas City, said she's spent thousands of dollars on various treatments to tackle her symptoms, which include memory loss, fatigue, headaches, and balance issues. Once, she said, it felt like she was having a stroke. Insider has viewed her medical bills, with costs including multiple MRIs, a CT scan, blood work, and "migraine cocktails."

"When I got the bill, the first thing I thought was that it was a mistake," Semarge said. "When I found out that it was for real, I cried because that's a good portion of my take home pay for a month. And it's just, you feel so helpless."

Much of long COVID is a mystery to healthcare professionals — why it happens, how to treat it — but data shows that it has affected millions of Americans. Symptoms often include severe fatigue and "brain fog," which makes basic functions difficult for those who suffer from it. Thousands of Americans have likely left the workforce because of long COVID, which costs US workers between $60 billion and $100 billion in lost wages per year, according to estimates from the National Bureau of Economic Research and the Brookings Institution, respectively.

Semarge's symptoms aren't so bad that she has to quit working. But they're making the everyday tasks associated with the job she's had for years incredibly difficult, she said. She is "out" about her illness at work.

"I tell all my students I have long COVID, because there have been times when my headaches are bad enough that I keep holding my head and my balance has been affected," she said. "So I let them know if I grab onto something, I'm not on drugs or anything, I just have a balance problem."

Many other workers, however, may be hesitant to reveal that they have long COVID. According to a recently published UK survey, about 91% of 1,100 respondents experiencing long COVID symptoms reported that they expect to experience stigma at some point due to their condition, and another 86% said they felt shame because of it.

Semarge said her suffering hasn't improved since contracting COVID a year ago. She's struggling to be as active as she used to be, teaching epidemiology to undergraduate students and serving as CPR liaison at UMKC's nursing school. But grading tests and maintaining her balance during classes remain difficult for her.

She also had to stop making new products for an online business she runs on the side. Customers still buy from her existing inventory of recycled skirts made from saris, but she hasn't "had the steam" to keep make new products.

All things considered, however, Semarge says she's lucky because her husband is still working, and they have health insurance. But her family is falling behind on their mortgage due to the costs associated with her healthcare, she said, and she's worried about how long she can keep up with her workload.

"Losing my job is a major concern," she said.

Long COVID treatments "have eaten our savings"

Semarge's candor about her condition at work is a departure from what her father always taught her.

"My dad always used to tell me if you're sick, don't tell anybody," she said. "But I kind of feel like somebody's gotta do it."

Her colleagues and administrators are supportive of her, she said. But oftentimes she'll encounter people who have symptoms that line up with long COVID, such as a prolonged loss of smell and taste or struggling with balance, but they dismiss it as a possibility. She wishes more people understood how "vulnerable" they are to COVID's aftereffects.

Semarge makes $70,000 a year on a contract that's up for renewal every academic year. It's a paycheck that her family relies on, but she's struggling to grade and do course prep when she's not teaching. In one instance when Semarge couldn't get out of bed, her husband read an article to her. She said she had him stop periodically "because it hurt" to pay attention.

"I had never had something like that happen before," she said. "It was terrifying."

Semarge took a week off last semester because her doctor wanted her to try a series of different headache medications, some of which were sedative, and required her to stay at home. When the meds didn't work, her doctor recommended a second week of trials, but Semarge said "I turned that down, because I had to get back to school."

It's hard for her to miss class because of the nature of contract teaching; absences require her to find a substitute, or to move classes online. Semarge intends to keep working as long as possible. She loves her job, she said, and she doesn't want to compromise her family's financial plans.

"We've cut down on savings because of the medical expenses," she added, mentioning that her family had to refinance their house last year.

Long COVID treatments, she said, "have eaten our savings. It's taken away my ability to meet goals."