Living with long COVID: A researcher’s perspective on mental health and care gaps
When Beth Stelson contracted COVID-19 nearly six years ago, she expected to recover. Instead, she became part of the first wave of patients who never fully got better, long before the term “long COVID” existed.
“I got sick with COVID in March 2020… and I just didn’t get better,” said Stelson, a postdoctoral research fellow in the department of epidemiology at Harvard T.H. Chan School of Public Health. As both a patient and a social epidemiologist, she turned to research. “For many of us, research is a coping mechanism to make sense and meaning out of this experience,” she said.
Stelson’s recovery has not followed a linear path. While she is “miles better” than in 2020 and 2021, symptoms continue to fluctuate. “We like to think that people get better or stay the same or get worse,” she said. “But it’s not a straight line. Mine has been more like a roller coaster.” That unpredictability is common among people living with long COVID and contributes to both physical and psychological strain.
One of the most persistent challenges, Stelson said, is the way long COVID is often misunderstood in clinical settings. While long COVID is not a mental health disorder, it frequently brings emotional consequences like those seen with other life-altering medical diagnoses. “With all life-changing medical diagnoses, it’s quite common to have a mental health challenge that goes along with it,” Stelson said. “But it’s important to recognize that long COVID isn’t a mental health condition.”
Symptoms like fatigue, cognitive impairment, and post-exertional malaise – a hallmark symptom in which physical or mental exertion triggers flare-ups – often resemble depression on screening tools. “Our screening tools often aren’t sensitive enough to distinguish the two,” Stelson said. “Someone might screen quite high if they have long COVID but not actually feel depressed or be experiencing depression at that time.”
From personal experience, she described how symptom crashes can temporarily affect mood. “When I’m experiencing post-exertional malaise and I’m in bed, I do feel kind of depressed,” she said. “But it’s temporary. It lifts when I’m able to get back out of bed.” Distinguishing situational distress from psychiatric conditions is critical to avoiding mislabeling and stigma.
She also highlights how social and economic pressures can be major drivers of worsening mental health. “People are sick and they thought they would get better and now they aren’t,” Stelson said. “They’re trying to care for their families and feeling financial precarity and employment precarity. So it’s quite logical they’re experiencing depression, anxiety, and potentially suicidal ideation.”
And because long COVID often presents without clear medical answers, how clinicians listen and respond can carry significant weight. Stelson’s research found that social support was a key predictor of mental health outcomes.
“One of the biggest predictors, aside from having a preexisting mental health condition, was how people’s systems of support were reacting,” she said. “Were they helping to pick up the slack, or were they questioning everything you were saying and discounting your experience?”
Alongside clinical care, practical supports such as workplace accommodations can also serve as protective factors for mental health. Stelson’s research on return-to-work experiences highlights flexibility.
“There can be this loss of self,” she said. “Your stamina isn’t the same. Your clarity isn’t the same. So what are the ways that you can work with people in your life, your employer, your medical provider, to build back so you can be yourself in the places you still can be?”
Options such as remote work, flexible scheduling, longer deadlines, and pacing adjustments help patients remain employed while reducing stress.
Even with these supports, systemic gaps remain. Workforce shortages in behavioral health and primary care limit access, particularly in rural communities.
Stelson also cautioned against automatically referring patients to mental health providers without addressing medical dimensions. “The automatic referral to psychiatry or psychology can come off as disbelieving and stigmatizing,” she said.
Instead, she advocates for a wraparound care model that integrates medical evaluation, mental health support, occupational therapy, and workplace accommodations.
Looking ahead, Stelson urges providers to approach the expanding long COVID research literature with care. “I strongly encourage clinicians to look at the scientific literature and see how the patient community was involved in the research study,” she said. “That’s a really strong indicator of the quality and knowledge base of the research team and how much to trust the results.”
She stressed that understanding the research is just one part of supporting patients. As long COVID continues to affect millions nationwide, mental health professionals will increasingly encounter individuals navigating the emotional impact of chronic illness.
Meeting these needs, Stelson said, requires attention not only to symptoms, but also to systems of care, barriers to access, and strategies for prevention.
“We need to think about what patients need now,” she said, “and what is preventable going forward.”