Editor’s note: Find the latest long COVID news and guidance in Medscape’s Long COVID Resource Center.
A year ago in December, mapping specialist Whitney Tyshynski, 35, was working out 5 days a week with a personal trainer near her home in Alberta, Canada, doing 5k trail runs, lifting heavy weights, and feeling good. Then, in January she got COVID-19. The symptoms never went away.
Nowadays, Tyshynski needs a walker to retrieve her mail, a half-block trip she can’t make without fear of fainting. Because she gets dizzy when she drives, she rarely goes anywhere in her car. Going for a dog walk with a friend means sitting in a car and watching the friend and the dogs in an open field. And since fainting at Costco during the summer, she’s afraid to shop by herself.
Because she lives alone and her closest relatives are an hour and a half away, Tyshynski is dependent on friends. But she’s reluctant to lean on them because they already have trouble understanding how debilitating her lingering symptoms can be.
“I’ve had people pretty much insinuate that I’m lazy,” she says.
There’s no question that COVID-19 cut people off from one another. But for those like Tyshynski who have long COVID, that disconnect has never ended. It’s not just that symptoms including extreme fatigue and brain fog make it difficult to socialize; it’s that people who had COVID-19 and recovered are often skeptical that the condition is real.
At worst, as Tyshynski has discovered, people don’t take it seriously and accuse those who have it of exaggerating their health woes. In that way, long COVID can be as isolating as the original illness.
“Isolation in long COVID comes in various forms and it’s not primarily just that physical isolation,” says Yochai Re’em, MD, a psychiatrist in private practice in New York City who has experienced long COVID and blogs about the condition for Psychology Today. “A different yet equally challenging type of isolation is the emotional isolation, where you need more emotional support, connection with other people who can appreciate what it is you are going through without putting their own needs and desires onto you — and that can be hard to find.”
It’s hard to find in part because of what Re’em sees as a collective belief that anyone who feels bad should be able to get better by exercising, researching, or going to a doctor.
“Society thinks you need to take some kind of action and usually that’s a physical action,” he says. “And that attitude is tremendously problematic in this illness because of the post-exertional malaise that people experience: When people exert themselves, their symptoms get worse. And so the action that people take can’t be that traditional action that we’re used to taking in our society.”
Long COVID patients often have their feelings invalidated not just by friends, loved ones, and extended family, but by health care providers. That can heighten feelings of isolation, particularly for people who live alone, says Jordan Anderson, DO, a neuropsychiatrist and assistant professor of psychiatry in the School of Medicine at Oregon Health & Science University in Portland.
The first patients Anderson saw as part of OHSU’s long COVID program contracted the virus in February 2020. Because the program addresses both the physical and mental health components of the condition, Anderson has seen a lot of people whose emotional challenges are similar to those Tyshynski faces.
“I think there’s a lack of understanding that leads to people just not necessarily taking it seriously,” he says. “Plus, the symptoms of long COVID do wax and wane. They’re not static. So people can be feeling pretty good one day and be feeling terrible the next. There’s some predictability to it, but it’s not absolutely predictable. It can be difficult for people to understand.”
Both Anderson and Re’em stress that long COVID patients need to prioritize their own energy regardless of what they’re being told by those who don’t understand the illness. Anderson offers to speak to his patients’ spouses to educate them about the realities of the condition because, he says, “any kind of lack of awareness or understanding in a family member or close support could potentially isolate the person struggling with long COVID.”
Depending on how open-minded and motivated a friend or relative is, they might develop more empathy with time and education, Re’em says. But for others, dealing with a confusing, unfamiliar chronic illness can be overwhelming and provoke anxiety.
“The hopelessness is too much for them to sit with, so instead they say things like ‘just push through it,’ or ‘just do X, Y, and Z’ because psychologically it’s too much for them to take on that burden,” he says.
The good news is that there are plenty of web-based support groups for people with long COVID, including Body Politic (which Re’em is affiliated with), Survivor Corps, and on Facebook. “The patient community with this illness is tremendous, absolutely tremendous,” Re’em says. “Those people can be found and they can support each other.”
Some long COVID clinics run groups, as do individual practitioners such as Re’em, although those can be challenging to join. For instance, Re’em’s are only for New York state residents.
The key to finding a group is to be patient, because finding the right one takes time and energy.
“There are support groups that exist, but they are not as prevalent as I would like them to be,” Anderson says.
OHSU had an educational support group run by a social worker affiliated with the long COVID hub, but when the social worker left the program, the program was put on hold.
There’s a psychotherapy group operating out of the psychiatry department, but the patients are recruited exclusively from Anderson’s clinic and access is limited.
“The services exist, but I think that generally they’re sparse and pretty geographically dependent,” Anderson says. “I think you’d probably more likely be able to find something like this in a city or an area that has an academic institution or a place with a lot of resources rather than out in a rural community.”
Tyshynski opted not to join a group for fear it would increase the depression and anxiety that she had even before developing long COVID. When she and her family joined a cancer support group when her father was ill, she found it more depressing than helpful. Where she has found support is from the co-founder of the animal rescue society where she volunteers, a woman who has had long COVID for more than 2 years and has been a source of comfort and advice.
It’s one of the rare reminders Tyshynski has that even though she may live alone, she’s not completely alone. “Other people are going through this, too,” she says. “It helps to remember that.”