All that is to say: Many COVID symptoms can impact a person’s physical, mental, or emotional capacity to work. “If you have brain fog from long COVID, which makes it difficult for you to concentrate in a sustained fashion on anything, that could create difficulty in almost any job,” William Schaffner, MD, infectious disease specialist and professor of medicine at the Vanderbilt University School of Medicine, tells SELF. People who have symptoms that are difficult to cope with—like chronic pain or fatigue—also “face a challenge, no matter what type of job they have,” he adds.
Diana Berrent Güthe, the founder of the COVID-19 education and resource center Survivor Corps, tells SELF that she’s seen this play out with plenty of the organization’s members. “One thing I can say for sure is people are having tremendous difficulty navigating the disability process,” she explains. “It’s complicated for lawyers, let alone anyone suffering from cognitive dysfunction, extreme fatigue, and tremendous pain.” (Under the American Disabilities Act, long COVID is not always considered to be a disability, and “an individualized assessment is necessary” to determine whether long COVID “substantially limits” a person’s life. Read more about that here.)
Another major issue is that symptoms can come and go, which makes it hard for some people to predict when they’ll actually be feeling well enough to work. “This is a real shade of gray,” Güthe says. “They don’t know whether going to work on Tuesday may prevent them from going to work on Wednesday. People have good days and bad days, good weeks and bad weeks.”
What should people with long COVID know about returning to work?
“Some people are so incapacitated that there’s no question of whether or not they can return to work,” Güthe says, adding that this can certainly lead to “financial trouble” for some folks. However, she also stresses that there is hope for recovery. “I don’t want to be doom and gloom about this—most people do get better over time,” Güthe says, adding, “I’ve heard of a few very lucky people whose employers have been accommodating to the best extent possible but each person’s situation is as unique as their fingerprint.”
People with long COVID have typically found that “working collaboratively with their employer to structure their return to work in a way that is manageable for them” is one of the best accommodations they can ask for, Andrew Wylam, a lawyer and the cofounder and president of Pandemic Patients, a nonprofit organization that supports people who have been impacted by COVID-19, tells SELF. “Gradual return to work is helpful, along with flexible hours and remote options,” he says. “People may want to return to work but they don’t want it to trigger their symptoms.”
Wylam says that it’s crucial for people with long COVID to “maintain open, constant communication with” their employer and supervisor about their symptoms and limitations. Of course, not every employer is flexible or even willing to make accommodations for people with long COVID. If you think you qualify for disability financial assistance and you’re struggling to figure out the system, Wylam suggests consulting a lawyer, if you can. They can help you understand what reasonable work accommodations look like, navigate workers’ compensation, and identify disability discrimination. (If you need help with this financially, you can look into Wylam’s Pandemic Legal Assistance Network, a national network of attorneys who provide free legal assistance to people who have been affected by COVID-19. You can also find pro bono legal service providers in your state here.)
Even though it can be tough, do your best to prioritize your well-being while navigating all of this. “If you have an empathetic and skilled primary care physician who is helping you, great,” Dr. Schaffner says. (They can help refer you to specialists in your area, depending on your symptoms.) “If not, and you’re within a stone’s throw from a major medical center, inquire if they have a long COVID clinic there so you can get on a treatment plan,” he says. And if you just don’t know where to start because you’re overwhelmed, advocacy organizations like Survivor Corps have resources that may help you find the care you need and deserve, including an interactive map that can help you track down specialized clinics in your state.
For Güthe, it’s all about taking things one step at a time. “What is happening now is not necessarily going to be your future,” Güthe says. “There’s a road to recovery here.”