Michelle Wilson was a nurse at Barnes-Jewish Hospital in the emergency room when she was diagnosed with COVID-19 in November 2020. She had what she calls a “mild case,” and returned back to work after recovering.
But then she started to feel sick again.
One morning, she woke up with chest pain and found it difficult to breathe. When she arrived at the hospital, she was diagnosed with bilateral pneumonia — a lung infection that impacts the tissue of the lungs and makes it hard to breathe.
After she got better, she returned to work again. But soon, the fatigue was too much.
"The shortness of breath, the arrhythmias, it just felt like I was running on a treadmill the whole time. So, they put me off work again and I spent January through May going to every doctor imaginable,” Wilson said. “Within a month, I had a specialist of every kind. So, I really, really worked hard those five months trying to get back to work.”
This began a long cycle of feeling better, going to work and getting sick again. Wilson was soon diagnosed with long COVID, a chronic illness that can last indefinitely.
The University of Missouri Long COVID clinic opened in May 2022 as a response to people like Wilson who were looking for answers. It has had many patients, as one in four Missourians have long COVID. Dr. Zachary Holliday, a pulmonologist, runs the clinic.
He said they still don’t know much about the disease because it is so new, but Long COVID can impact basically any part of the body, including the respiratory, cardiovascular, nervous and gastrointestinal systems.
“Your body's gonna dictate what you do, and you have to listen to it. And if you feel like every day, you can do a little bit more — fantastic. That's what we want you to do, but at the same time, if your body says ‘This is very painful. I'm having a lot of difficulty breathing,’ you have to listen to that as well,” Holliday said.
He added even for his patients who recover after months with the disease, things might not be the same.
“You may not be at your previous baseline. It may either take more time or you may never get back fully, but you still need to listen to yourself to make sure that you're not hurting yourself,” Holliday said.
That can impact one’s ability to work. Holliday said he understands this could be a difficult, but necessary conversation to have with an employer.
He added most of his patients' employers have been understanding, but in some cases, employers had to take some extra steps to get his patients the accommodations they now need.
“I just spoke to someone today for a follow up just with some issues, who is actually having to work through workers' [compensation] just to have an employer change their jobs to help with their symptoms, and that's always tough to hear,” Holliday said. “They’re having to go through the stress of doing something like that just to have their employer hear them.”
In October, University of Missouri Extension released a brief which examined the impact of long COVID on an already tight labor market entitled "COVID-19 and Paid Leave." Luke Dietterle, an extension specialist for Exceed - Regional Economic and Entrepreneurial Development, was one of the authors of the report.
“An estimated 3% of the adult Missouri population is experiencing significant impacts to their daily activities due to long COVID — roughly 62,000 Missourians,” Dietterle wrote in an email.
That exacerbates a tight labor market. According to the Missouri Monthly Job Report, unemployment in Missouri was 2.7% in November 2022, but some businesses still struggle to find workers, especially as more working-age Missourians are diagnosed with long COVID.
“Employers will face challenges accommodating these individuals in the workplace, as well as hiring new individuals from a labor force that could be reduced due to these long COVID sufferers choosing to remove themselves from the available labor pool,” Dietterle wrote.
A recent study by the Brooking’s Institute found as of January 2022, long COVID accounted for about 15% of the unfilled jobs in the market.
So, when it comes to rejoining the labor force or what that's going to look like, Dr. Holliday at the MU COVID clinic said he often can’t answer those questions for his patients.
"I think the hardest thing for our patients is that if we find something that we know how to treat, we can treat it but there's a lot of unknown still out there,” Holiday said. “I think that's hard. Knowing that we're still working on potential treatment interventions for some of these patients.”
But for Michelle Wilson, not going back to work is just part of her long COVID story. She sold her two-story house due to the stairs, hired someone to help keep the house clean and sometimes, she feels so exhausted, it can be difficult to cook dinner or even take a shower.
Wilson remembered her interactions with her doctor: “I would ask the doctor ‘How long do you think it'd be before I feel better? How long before I'm not going to be short of breath anymore? How long before I'm not fatigued anymore?' And they would just look at me and say, ‘Well, we don't know, you're helping us figure that out.’”
For now, she said she has accepted chronic illness as part of her new reality.