December 21, 2022 – A year ago in December, mapping specialist Whitney Tyshynski, 35, was training 5 days a week with a personal trainer near her home in Alberta, Canada, doing 5k races , lifting heavy weights and feeling great. Then, in January, she contracted COVID-19. The symptoms never went away.
These days, Tyshynski needs a walker to get her mail, a half-block walk she can’t do without fear of fainting. Because she gets dizzy when she drives, she rarely goes anywhere in her car. Going for a walk with a dog means sitting in a car and observing the friend and the dogs in an open field. And ever since she passed out at Costco over the summer, she’s been afraid to shop on her own.
Because she lives alone and her closest relatives are an hour and a half away, Tyshynski depends on friends. But she’s reluctant to lean on them because they’re already struggling to understand how debilitating her lingering symptoms can be.
“I’ve had people pretty much insinuate that I’m lazy,” she says.
There is no doubt that COVID-19 has cut people off from each other. But for those like Tyshynski who have long COVID, that disconnect never ended. It’s not just that the symptoms, including extreme fatigue and brain fog, make it difficult to socialize; is that people who have had COVID-19 and have recovered are often skeptical about the reality of the disease.
At worst, as Tyshynski discovered, people don’t take it seriously and accuse those with it of exaggerating their health issues. In this way, the long COVID can be as isolating as the original illness.
“Isolation in long COVID comes in a variety of forms and it’s not primarily this physical isolation,” says Yochai Re’em, MD, a psychiatrist in private practice in New York City who has experienced long COVID and blogging on the condition of psychology today. “A different but equally difficult type of isolation is emotional isolation, where you need more emotional support, a connection with other people who can appreciate what you are going through without imposing their own needs on you, and desires – 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, doing research, or seeing a doctor. .
“Society thinks you have to take action and it’s usually a physical action,” he says. “And that attitude is extremely problematic in this disease because of the post-exertional malaise that people have: when people exercise, their symptoms get worse. And so the action that people take can’t be the traditional action that we are used to undertaking in our society.
Long-time COVID patients often have their feelings invalidated not just by friends, loved ones, and extended family, but by healthcare providers. This can increase feelings of isolation, especially for people who live alone, says Jordan Anderson, DO, neuropsychiatrist and assistant professor of psychiatry in the Medicine School at Oregon Health and Science University in Portland.
The first patients Anderson saw as part of The OHSU COVID Long Program contracted the virus in February 2020. Because the program addresses both the physical and mental health components of the disease, Anderson has seen many people whose emotional challenges are similar to these faces of Tyshynski.
“I think there’s a lack of understanding that people don’t necessarily take it seriously,” he says. “Also, the symptoms of long COVID go up and down. They are not static. So people can feel pretty good one day and feel bad the next. There is some predictability, but it is not absolutely predictable. This can be difficult for people to understand. »
Both Anderson and Re’em emphasize that long-time COVID patients need to prioritize their own energy, regardless of what those who don’t understand the disease tell them. Anderson offers to speak to his patients’ spouses to educate them about the realities of the disease because, he says, “any form of lack of awareness or understanding from a family member or close support could potentially isolate the person to taken with a long COVID.
According to Re’em, depending on the openness and motivation of a friend or relative, he could develop more empathy with time and education. But for others, coping with a confusing and unfamiliar chronic illness can be overwhelming and anxiety-provoking.
“Despair is too heavy for them, so instead they say things like ‘just get through it’ or ‘just do X, Y and Z’ because psychologically it’s too much for them to shoulder that burden,” he says.
The good news is that there are many support groups on the web for people with long-term COVID, including Body politic (with which Re’em is affiliated), Corps of survivors, and on Facebook. “The community of patients with this disease is wonderful, absolutely wonderful,” says Re’em. “These people can be found and they can support each other.”
Some long-term COVID clinics run groups, as do individual practitioners such as Re’em, although these can be difficult to reach. For example, Re’em’s are restricted to residents of New York State.
The key to finding a group is to be patient, as finding the right one takes time and energy.
“There are support groups, but they’re not as widespread as I would like,” Anderson says.
OHSU had an educational support group led 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 is a psychotherapy group operating out of the psychiatry department, but patients are recruited exclusively from Anderson’s clinic and access is limited.
“The services are there, but I think in general they’re sparse and quite geographically dependent,” Anderson says. “I think you’d probably be more likely to find something like this in a city or region that has an academic institution or somewhere with a lot of resources than in a rural community.”
Tyshynski chose not to join a group for fear it would increase the depression and anxiety she had before she even developed long COVID. When she and her family joined a cancer support group when her father was sick, she found it more depressing than helpful. Where she found support was with the co-founder of the animal rescue society where she volunteers, a woman who had long had COVID for over 2 years and was a source of comfort and advice.
It’s one of the few reminders Tyshysnki has that even though she lives alone, she’s not completely alone. “Other people are going through this too,” she says. “It helps to remember that.”