For Long-Haulers, Covid-19 Takes a Toll on Mind as Well as Body

Although social media groups provide validation, there is also some risk. Groups that do not moderate their content can contribute to the spread of misinformation when users share unverified medical advice. (Survivor Corps requires people to link to trustworthy sources, and Body Politic deploys volunteers to moderate posts.) Support group members also sometimes inadvertently reinforce one another’s fears through detailed discussion of their own medical experiences, according to Jo Daniels, a psychologist at the University of Bath and an author of a recent study in the journal American Psychologist on Covid-19 and mental health.

Some long-haulers said that their doctors recommended limiting the time they spent on these groups daily so they could take in information without becoming overwhelmed.

Immunologists speculate that long-haulers’ symptoms might persist because they harbor fragments of viral genes that are not infectious but that trigger violent immune reactions. There is limited knowledge of Covid-19’s lingering impact, however, both because the illness is still new and because of broader gaps in understanding the long-term effects of viral infections.

Many long-haulers said their mental health suffered when they faced skepticism about their symptoms from friends, family and even medical providers. Female long-haulers pointed to numerous studies showing that medical providers were more likely to underestimate women’s pain levels and misdiagnose their conditions. Ms. Smith said that in her first week of illness, her male doctor suggested she might have a sinus infection rather than Covid-19. Ms. Vázquez was told that her difficulty breathing could be a product of anxiety. Gina Assaf, a consultant in Washington, D.C., who helped write Body Politic’s report, said that by week six of her Covid-19 course, her doctor asked if her symptoms could be bad allergies.

“That felt like gaslighting,” Ms. Assaf said. Her friends, some of whom had recovered from Covid-19 more quickly, were dubious of her lingering symptoms. “I stopped talking about it with a lot of my friends because it felt like they couldn’t understand.”

The pandemic has caused mental stress for many in its disruption to social, work and exercise routines. But these interruptions are often worse for long-haulers. Some cut themselves off from community — partly because they are sick, but also because they are loathe to explain physical and mental problems that they themselves do not understand. The activities that they normally rely on to relieve stress, such as exercise, are difficult or impossible to undertake. In Dr. Lambert’s survey of long-haulers, “inability to exercise or be active” was the fifth most commonly reported symptom, cited by 916 respondents.

Being unable to work and feeling unproductive can also hinder mental health, according the National Alliance on Mental Illness. Losing income and health insurance brings its own form of anxiety.