December 21, 2022 – A year ago in December, Whitney Tyshynski, 35, a mapping expert near her home in Alberta, Canada, was working out 5 days a week, running 5Ks, lifting weights and feeling good of. Then, in January, she contracted COVID-19. The symptoms never went away.
Now, Tyshynski needs a walker to retrieve her mail, and she can’t walk half a block without fear of passing out. Because she gets dizzy while driving, she rarely drives anywhere. Walking the dog with a friend means sitting in the car and watching the friend and the dog out in the open field. Since she passed out at Costco in the summer, she dared not go shopping by herself.
Because she lives alone and her closest relatives are an hour and a half away, Tyshynski relies heavily on friends. But she was unwilling to rely on them, as they had struggled to comprehend how debilitating her lingering symptoms could be.
“A lot of people have implied that I’m lazy,” she said.
There is no question that COVID-19 has isolated people from each other. But for someone like Tyshynski who has been living with COVID for so long, the disconnect never ends. It’s not just symptoms like extreme fatigue and brain fog that make socializing difficult; people who contract and recover from COVID-19 often wonder if that’s true.
Worst of all, as Tyshynski discovered, people don’t take it seriously and instead accuse those who suffer from it of exaggerating their health problems. In this way, prolonged COVID can be as isolated as the original disease.
“Isolation in prolonged COVID takes many forms, primarily not just physical isolation,” said Yochai Re’em, a psychiatrist in private practice in New York City who has experienced prolonged COVID and blog About the conditions psychology today“A different but equally challenging type of isolation is emotional isolation, where you need more emotional support, connecting with other people who can understand what you’re going through, rather than imposing their own needs and desires on you – This can be hard to find.
Part of the reason it’s hard to find is that Re’em believes that anyone who isn’t feeling well should be able to get better through exercise, research, or a trip to the doctor.
“Society thinks you need to take some kind of action, usually physical action,” he said. “This attitude is very problematic in this disease because people experience post-exertion malaise: when people exert themselves, their symptoms get worse. Therefore, the actions people take cannot be what we see in society. the kind of traditional action that is customary in China.”
Patients with chronic COVID-19 often experience denial of their feelings not only by friends, loved ones, and extended family, but also by healthcare providers.This can exacerbate feelings of isolation, especially for people who live alone, neuropsychiatrists and Assistant Professor of Psychiatry inside medical school Oregon Health and Science University in Portland.
The first patients Anderson saw OHSU’s Long-Term COVID Plan Infected with the virus in February 2020.As the program addresses both the physical and mental health aspects of the disease, Anderson has seen many emotional challenge Similar faces to those of Tyshynski.
“I think the lack of understanding has resulted in people not necessarily taking it seriously,” he said. “Plus, the symptoms of long-term COVID can come and go. They’re not static. So people might feel fine one day and bad the next. It’s somewhat predictable, but not absolutely predictable. It can be difficult for people to understand.”
Both Anderson and Re’em stress that chronic COVID patients need to prioritize their energy, regardless of what those who don’t understand the disease tell them. Anderson offered to talk to the patient’s spouse to educate them about the true nature of the condition, because, he said, “any kind of lack of awareness or understanding or close support among family members can leave someone battling a long-term COVID situation isolated.”
Depending on how open-minded and motivated a friend or relative is, they may develop more empathy with time and education, Re’em said. But for others, coping with a confusing, unfamiliar chronic illness can be overwhelming and anxiety-provoking.
“The desperation is unbearable for them, so they say ‘keep at it’ or ‘just do X, Y and Z’ because psychologically they can’t handle that,” he said.
The good news is that there are many web-based support groups for people with long-term COVID infections, including body politics (Re’em affiliated with), Legion of Survivors, and on Facebook. “The patient population with this disease is huge, absolutely huge,” Re’em said. “These people can be found and they can support each other.”
There are some long-standing COVID clinic running groups, as do individual practitioners like Re’em, although joining these groups can be challenging. For example, Re’em’s are only available to New York State residents.
The key to finding a group is patience, as finding the right group takes time and effort.
“Support groups exist, but they’re not as common as I’d like them to be,” Anderson said.
OHSU had an educational support group run by a social worker attached to the long-term COVID center, but the project was put on hold when the social worker left the program.
The psychiatric department had a psychotherapy team, but patients were recruited entirely from Anderson’s clinic, and access was limited.
“These services exist, but I think they’re often sparse and very geographically dependent,” Anderson said. “I think you’re probably more likely to find something like this in a city or region that has an academic institution or a lot of resources than in a rural community.”
Tyshynski chose not to join a group for fear it would add to the depression and anxiety she already had even before developing long-term COVID. When her father fell ill, she and her family joined a cancer support group, which she found more frustrating than helpful. She has received support from the co-founder of the Animal Rescue Society she volunteers with, a woman who has been chronically ill with COVID for over 2 years, and has been a source of comfort and advice.
It’s one of Tyshysnki’s rare reminders that while she may live alone, she’s not entirely alone. “Other people are going through this,” she said. “It helps to remember that.”
