Virtual support group helps people with Long COVIDJun. 15, 2023, 11:03 AM
by Nancy Humphrey
Kate Whitley, mother of a 6-year-old daughter, was active in her church and community and led a bustling business designing faith-based products sold in 300 retail stores throughout the country.
“I’m what they call a type A go-getter. I’m an entrepreneur and a doer. I’m a pretty optimistic, joyful person. And then, COVID.”
After avoiding COVID-19 for much of the pandemic, Whitley became infected with the omicron variant of the virus on Labor Day weekend in 2022 after her daughter’s school stopped requiring masks. Whitley, her husband, Dave, and daughter, all became sick, with only her daughter having a mild case. Whitley was hospitalized for five days after developing an E. coli infection.
By November, she thought she might be feeling better, but her health and cognitive function began to decline. She was diagnosed with Long COVID (also known as long-haul COVID or post-acute sequelae of COVID-19) months after recovering from the initial infection.
She suffers from a wide range of ongoing debilitating health problems including disabling fatigue, brain fog (Whitley prefers the term brain injury), heart issues, and extreme sensitivity to sound and smell.
In addition to receiving her medical care at Vanderbilt University Medical Center, Whitley is one of about 100 patients participating in a free virtual support group program for those with Long COVID at VUMC. The groups offer support and help teach patients strategies and coping techniques for living with Long COVID.
About 200 million people are estimated to suffer from Long COVID. It occurs more often in people who had severe COVID-19 illness, but anyone who has been infected with the virus that causes COVID-19 can experience it.
The most common symptoms include fatigue, brain fog and and mental health issues resulting from the effects of cognitive or physical issues. Suicidal ideation also occurs in those experiencing Long COVID.
Many of those living with Long COVID have lost their ability to go to work or school and have trouble looking after children.
Those participating in the five support groups at VUMC include Vanderbilt employees and patients from across the country, Canada and Europe. The support groups are led by James Jackson, PsyD, research professor of Medicine and director of Behavioral Health at the ICU Recovery Center at VUMC. Jackson has written a book, “Clearing the Fog,” a practical guide “for surviving to thriving” with Long COVID.
There’s no one test that determines if a patient’s symptoms are due to COVID-19, but a person’s health care provider determines the diagnosis based on the patient’s health history, including if there has been a diagnosis of COVID-19. Those who have been diagnosed are often dismissed and misunderstood, Jackson said.
“Many people don’t have the resources to pursue mental health treatment as thoroughly as they’d like, or at all,” Jackson said. “The fact that we can offer this service to folks is really lovely, and Vanderbilt has developed a reputation for being one of the leaders in this space.
“The groups have met a really deep need for patients because loneliness and isolation are a big concern in the context of COVID, and they find a lot of community there. It’s been a vehicle for healing for these patients and an opportunity to learn what their needs are and then to refer them for further care.”
Whitley, who said she was suicidal before beginning the support group, wondered, “how do I keep going on if this is my life? I went to my daughter’s ukelele performance at school for Black history month…and my husband had to take me home. I didn’t see her perform. My life has been a million lows,” Whitley said.
“When I joined the support group, I remember Dr. Jackson saying, ‘Life before COVID was not perfect. Life with COVID is not perfect, but there was still good to be found before COVID and there’s still good to be found now.’ I can own that now. It’s slowly sunk into my bones and my perspective has changed. I can live with this.”
One of the support groups uses a technique called acceptance and commitment therapy, an innovative approach to mental health treatment in which patients learn that the difficulties they are having aren’t necessarily going to go away, but they can learn to co-exist with them.
Jackson said this approach has been helpful for him personally. Diagnosed several years ago with obsessive-compulsive disorder, he had to learn how to live with the disease.
“It was a big challenge. I didn’t want it. I was surprised I developed it and wanted to get rid of it, but my therapist said, ‘Now that you’ve got it, you’ve got it. You’re not getting rid of it,” he said. “Over time, using the techniques for acceptance and commitment, I learned that I could find a way to thrive along with this, that even if it didn’t go away, I’d be OK.”
The same goes for patients with Long COVID.
“They don’t want it. They badly want to get rid of it, and we try to help them get rid of it, but the message of ACT is, even if we aren’t able to, we can help you find ways to lead a meaningful life along with it. That’s really empowering.”
Jackson said the existing groups are only a fraction of what is needed. VUMC has about 50 patients on a waiting list.
There’s been some discussion at VUMC about developing webinars and programming that would teach other institutions how to develop the VUMC support group model.
“We’ve had a fair amount of interest from people all over the world.”