North Central Florida support group brings hope to people with long COVID
A pair of UF Health therapists saw a need among their patients with long COVID to meet and talk with others with similar experiences.
Kimberly Moore, 55, of Interlachen, is in her second year with long COVID. After getting infected for the first time, her life hasn’t been the same.
“Before COVID, I was chopping down trees, building a deck, working 10 hours a day, coming home and dealing with all my animals,” Moore said. “Now it’s very difficult to do basic daily living things. I had to cut off my hair because even showering takes a lot out of you.”
According to the World Health Organization, long COVID presents itself in individuals who have been infected with COVID-19 in the form of persistent symptoms that last at least two months and cannot be explained with another diagnosis.
Severe fatigue, shortness of breath, brain fog, depression and anxiety are some of more than 200 symptoms in Long COVID listed by the Patient-Led Research Collaborative. These symptoms can fluctuate and behave in unpredictable ways.
Jamuna Fheth, 34, has had long COVID since 2020. She said she used to lead a very active life where she taught yoga and traveled the world selling handmade jewelry. She hasn’t been able to go back to that lifestyle due to the unpredictability of her symptoms.
“I’ll have like a month or two where I feel like I’m feeling better,” Fheth said. “I think I’m healing and I’m going uphill and then something will happen out of nowhere, something small, even just life things and I’ll crash, and I could be down for a few months where I can’t seem to get myself back up.”
Long COVID affects people of all ages, but people in their 20s to their 80s more prominently. According to data from Long COVID Physio, it affects more women than men and it is very likely to prevent people from working.
Sharon Yeago, 67, has had long COVID for 3½ years. Something that she continues to struggle with is finding understanding from the people around her.
“The hardest thing is that our family and friends don’t understand,” Yeago said. “Your kids think you’re lazy. … Your friends just don’t understand why you don’t go to the festivals anymore or why I can’t dance on the dance floor like I used to.”
Tony Garcia, a UF Health occupational therapist, started working with long COVID patients in 2022. He saw a need in his patients with long COVID and decided to start a support group called the North Central Florida Long COVID support group.
“I had so many patients telling me like, ‘The only support I get is from social media and online,’ or ‘I don’t have anyone I can talk to here, the best talk I have is coming to physical and occupational therapy,’” Garcia said. “It just like automatically clicked for me: We need a support group here. This is the prime patient population that would benefit from a support group.”
Garcia started the support group in his free time in collaboration with co-worker Adam Lauretta, also a UF Health physical therapist, and the group had its first meeting in March.
Since then, Moore has attended every month. She says that going to the meetings pushes her to get out of the house.
“It is a saving grace for a lot of us because it helps us to know that we’re not alone.” Moore said.
Yeago lives in Columbia County and drives 40 minutes to an hour to make it to the meetings, even if that means having to rest all day to have enough energy.
For people like Yeago who might live far from Gainesville, Garcia also offers them the option of joining through Zoom. People have joined from Tampa, St. Augustine and the Panhandle.
In these meetings, Garcia and Lauretta have brought guest speakers and most recently organized an art activity for the members to engage in. They brought acrylic paint and took down some of the tiles from the ceiling so they could use them as a canvas.
During the meetings, members get to also share their experiences in alleviating their symptoms.
Jenny Jones, 43, a former University of Florida professor, has been going to the support group meetings and found people with experiences like hers.
“I can listen to people that have had my same experience. I can see how I’ve grown and how I’ve sort of learned how to manage all this over the last year,” Jones said. “Because I can see myself in the newer members and how scared I was, whereas now there’s a lot more that’s known to me and I’m less scared.”
There are still a lot of unknowns when it comes to long COVID. Irene Estores, UF health associate professor in the Department of Physical Medicine and Rehabilitation runs the COVID Restore rehab clinic. While there is no cure or treatment for the disease, she said, her job is to offer ways for her patients to manage their symptoms.
“It is important that the care is tailored to the patient because every long COVID patient presents differently,” Estores said. “It’s important that the care is tailored to them and that they are monitored.”
Meanwhile, Moore said she hasn’t missed one month of meetings, and she doesn’t plan to.
“The commonality that I hear from people around here in the support group is that we’re grieving,” Moore said. “We grieve for the person that we were before getting (COVID-19).”