COVID isolated people. Long COVID makes it worse
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December 21, 2022 – A year ago in December, mapping specialist Whitney Tyshynski, 35, worked out 5 days a week with a personal trainer near her home in Alberta, Canada, doing 5K trail runs, lifting heavy weights and felt good. Then, in January, she got COVID-19. The symptoms never went away.
These days, Tyshynski needs a walker to get her mail, half a street she can’t do without fear of fainting. Because she gets dizzy when driving, she rarely goes anywhere in her car. Walking with a friend means sitting in a car and watching the friend and the dogs in an open field. And ever since she fainted at Costco over the summer, she’s been afraid to shop alone.
Because she lives alone and her closest relatives are an hour and a half away, Tyshynski is dependent on friends. But she declines to lean on them because they’re already struggling to understand how debilitating their ongoing symptoms can be.
“I’ve often been accused of being lazy,” she says.
There is no question that COVID-19 has cut people off. But for those like Tyshynski who have long had COVID, that disconnect never ended. It’s not just that symptoms like extreme fatigue and brain fog make socializing difficult; As a matter of fact, people who have had COVID-19 and have recovered are often skeptical that the condition is real.
At worst, as Tyshynski found, people don’t take it seriously and blame those who have it for exaggerating their health problems. In this way, a long COVID can be just as isolating as the original illness.
“Isolation in long COVID comes in a variety of forms, and it’s not primarily just this 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. “Another but equally challenging type of isolation is emotional isolation, where you need more emotional support, connection with other people who can understand what you’re going through without forcing their own needs and desires on you — and that can be difficult Find.”
It’s hard to find in part because Re’em sees it as a collective belief that anyone feeling down should be able to recover through exercise, research, or a visit to the doctor.
“Society thinks you have to do something, and usually it’s a physical action,” he says. “And that attitude is hugely problematic with this disease because of the post-exertional malaise that people experience: when people exert themselves, their symptoms worsen. And so the action that people take cannot be the traditional action that we are used to in our society.”
Long COVID patients are often emotionally drained not only by friends, loved ones and extended family, but also by healthcare providers. That can increase feelings of isolation, especially for people who live alone, says Jordan Anderson, DO, neuropsychiatrist and Assistant Professor of Psychiatry in which school of medicine at Oregon Health & Science University in Portland.
Anderson saw the first patients as part OHSU’s long COVID program contracted the virus in February 2020. Because the program addresses both the physical and psychological components of the condition, Anderson has seen many people whose emotional challenges resemble these Tyshynski faces.
“I think there’s a lack of understanding that makes people not necessarily take it seriously,” he says. “Also, the symptoms of long COVID are waxing and waning. They are not static. So people can feel pretty good one day and awful the next. It has some predictability, but it’s not entirely predictable. It can be difficult for people to understand.”
Both Anderson and Re’em emphasize that long COVID patients need to prioritize their own energy, regardless of what they are told by those who don’t understand the disease. 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 the person who has been battling with long COVID has, could possibly isolate”.
Depending on how receptive 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 bewildering, unknown chronic illness can be overwhelming and instill anxiety.
“The hopelessness is too much for them, so instead they say things like ‘just go through with it,’ or ‘just do X, Y and Z,’ because psychologically it’s too much for them to take on that burden,” he said says.
The good news is that there are many web-based support groups for people with long COVID, including body politics (connected to the Re’em), survival corps, and on Facebook. “The patient community with this disease is tremendous, absolutely amazing,” says Re’em. “These people can be found and they can support each other.”
Some long-running COVID clinics run groups, as do individual practitioners like Re’em, although these can be difficult to join. For example, Re’em’s are for New York State residents only.
The key to finding a group is patience, as finding the right group takes time and energy.
“There are support groups, but they’re not as widespread as I’d like,” says Anderson.
OHSU had an educational support group led by a social worker who is part of the long COVID hub, but when the social worker left the program, the program was suspended.
There is a psychotherapy group that operates out of the psychiatric ward, but patients are recruited solely from Anderson’s clinic and access is limited.
“The services are there, but I think they’re generally sparse and pretty geographically dependent,” says Anderson. “I think you’d be more likely to find something like this in a city or area with an academic facility or a place with a lot of resources than in a rural community.”
Tyshynski chose not to join any groups for fear it would add to the depression and anxiety she had long before she developed 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 as the co-founder of the animal rescue society she volunteers for, a woman who has been suffering from COVID for more than 2 years and is a source of comfort and advice.
It is one of Tyshysnki’s rare memories that while she lives alone, she is not entirely alone. “Other people go through it, too,” she says. “It helps to remember.”
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