For Covid-19 Long-Haulers, Online Therapy Group Provides a Refuge

Lori Donahue doesn’t have to think back to March 2020 when she first developed Covid-19 to remember the debilitating effects of the virus.

Some of them are still with the Nassau County resident, 20 months after she was infected, and manifest in strange ways, from a “vibrating” sensation in her legs to brain fog that keeps her from remembering things she has known how to do for decades.

She is coping with the Covid-19 long-haul symptoms with the  help of her husband and her boss, but largely, a  therapy support group run by Kacey Farber, a social worker and case manager at Huntington Hospital.

The long-haul group is one of several online sessions Farber operates, including a group that helps those grieving for someone lost to the disease.

For Donahue, the therapy group of Covid survivors has provided support, information and contact during the struggle to keep the illness from dominating her life.

The symptoms have been unusual, nothing like any experts expected when the disease first appeared around the globe in 2020 and was initially thought to be a respiratory disease.

At first, she was home, confined to bed, unable to move about. She experienced alternating chills and fever, with fatigue setting in in May 2020. Her hair began falling out and she developed a constant pain in her knuckles, followed by the arrival of brain fog.

“I couldn’t remember things,” she said. “Brain fog was a little unnerving when you don’t remember how to do things or forget to do things. I felt loopy.”

“The first time i did drive in January, all of a sudden I couldn’t remember where I was going,” she said. “I had to pull over and look at my phone calendar and then look up how to get to doctor’s office,” the same doctor she had been seeing for years.”

Donahue, 54, couldn’t do such basic daily activities as remember to turn the water off when using the kitchen sink, or save a file on her computer.  “Everything would eventually come back to me, but it was really unnerving.” She resorted to leaving herself notes as reminders.

The symptoms ranged across a variety of systems, including  pain in her lungs, though her oxygen level was okay, a cracked tooth, which she has learned is a frequent problem for Covid long-haulers, and phantom smells that don’t exist. She will smell smoke, for example, when no on else does, and experienced inexplicable tastes, such as a metallic taste in everything that lasted for months, and tinnitus.

In March or April of this year, after visiting a clinic at Stony Brook, she learned that the support group was forming.

“It was perfect timing needed for forging relationships with people,” she said. ”You get that connection. It’s been a blessing just to have that connection with people,” she said. “The group has been like a safe haven, to just talk to people who get it.  A lot of people, they’re tired of it; I’m tired of it too. I hate hearing about it (Covid) but i still have to deal with it.”

It’s that connection with others that is key to helping people cope, Farber said. “People feel very isolated. Covid has become very politicized. They really value the time together, to  connect and talk about the struggles they’ve had.”

Farber began running support groups in October 2019; the Covid groups started operating in March in April 2020, and she had six bereavement groups.

The long-haul group started in April 2021.

“It’s a brilliant virus,” Farber said. “There’s no rhyme or reason as to who gets sick, why some have continuing symptoms and someone else is fine. It’s so sad how Covid has taken so much.”

For members of her group, Covid “Impacts them every day.  They have to prioritize taking care of themselves, If they go for a walk, they have to make time to take a rest.” The symptoms she sees in long-haulers includes brain fog, fatigue, a disconnect between thought and speech, respiratory problems, shortness of breath. Patients need recovery time for doing something that others don’t even have to think about.

“I feel so lucky these people let me into their lives. it’s a unique and intimate relationship, “ Farber said.

Donahue, who is healing, said the members of the group swap information about treatments they’ve heard about or diet ideas or the latest that they hear about doctors. “We are able to talk about what we’re feeling and going through, she said. It gives us a place where we’re understood.”

 

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