Some COVID-19 survivors face a host of new symptoms — months after they first got sick. They grapple with physical and mental health conditions they never experienced before. Efforts are underway to learn more about these “COVID long haulers” and how to help them.
Among efforts are a support group through Stony Brook Medicine. Fran Zito, who attends the group, and her husband battled COVID-19 this spring.
“I was alone in the house, trying to take care of myself and also thinking that my husband was going to die,” Zito said.
They came out on the other side. But not without scars.
“It was really rough. It was... it was really, really rough,” she said.
That was April. Now, Zito said she has a whole new set of symptoms, like memory loss, and an unrelenting fatigue that zaps her energy. She used to walk three miles around her Fort Salonga, Long Island, neighborhood after work. Now, that’s out of the question.
“You can't get to the supermarket, or throw in a load of laundry, or walk on the treadmill, because you just can't,” Zito said. “You're just exhausted.”
She said her new symptoms are both physical and mental.
“Anxiety and depression, to the point where it’s just not going away,” she said.
There’s an informal name for what Zito is going through: long haul COVID. Long haulers have technically recovered from the disease. But they’re not better.
“I saw that Dr. Jenna Palladino was starting a COVID support group and I said ‘Oh my God, that would be amazing,’” Zito said.
Palladino is a psychologist at Stony Brook Medicine. She helped develop the group so she can study long haulers and hopefully come up with a treatment plan. There are almost 100 symptoms and no one is sure who gets which.
“They're sharing a lot of cognitive issues,” Palladino said. “Difficulty with short term memory, forgetfulness, as well as prolonged loss of taste and smell.”
Others report brain fog, heart issues, indigestion, diarrhea and breathing issues.
Palladino said survivors struggle with the fear they’ll catch the virus again.
“Also frustration and anger that people haven't been taking the second wave as seriously as they feel they should be, not understanding why people are continuing to debate wearing masks,” Palladino said.
And some survivors need support because they’re trying to cope with problems they never had before.
“We wanted to make sure we were learning from them about what they needed, rather than coming in with a prescription that may not be appropriate in the situation,” Palladino explained. “And what the group members have really expressed needing is mostly a space to share about their experiences and connect with people who can understand.”
Zito joined about a month ago. Now, she looks forward to the virtual meetings each week.
“It's really wonderful, because people who haven't gone through it don't really know or understand,” she said.
And it helps to know she’s not alone.
“There’s a camaraderie there,” Zito said. “You can say whatever you want; we talk about what's going on in the news, and different ways of coping.”
Zito said the virus has gotten a lot of attention — the infection rates and shutdowns — and now the vaccine. She thinks the next focus will be on long haulers like her.
“I think the awareness of people's mental and psychological issues is just as important,” she said.
Doctors, like Palladino, said there’s still much to learn about how COVID-19 affects people long term.
“I believe there's sometimes a misconception that because you're young, you won't catch it, or you won't have longer term impacts,” Palladino said. “And we just don't know if that's true. So my takeaway is to just encourage everyone to be as cautious as possible.”
For more information about the COVID-19 support group at Stony Brook Medicine call 631-632-2428.
