Stony Brook offers support group for those feeling isolated with 'long COVID'

Denise Crean said doctors were either dismissive or didn’t know how to treat her when she told them about the debilitating fatigue, brain fog and other symptoms she experienced long after contracting the coronavirus.

Crean, 55, of Farmingville, has a condition known as "long COVID," in which symptoms can linger many months after the initial infection. As many as 13.2 million Americans have long COVID, according to an estimate from the American Academy of Physical Medicine and Rehabilitation.

After months of facing long COVID alone, Crean found support in a weekly online group started by Stony Brook Medicine. In the group, she bonds with others confronting an uncertain prognosis from a condition that scientists are struggling to explain.

"This is a community of people who understand," said Crean, a former preschool special education teacher. "I don’t have to prove I’m sick to them. They get it."

Studies show those who were sick enough with COVID-19 to be hospitalized were more likely to develop long COVID, but that many people who had mild cases also have lingering symptoms months later. The Centers for Disease Control and Prevention defines long COVID as symptoms occurring at least four weeks after initial infection.

A peer-reviewed British study published in March in Nature Medicine found that women were more likely to get long COVID than men, and that older adults, people who are overweight or have asthma, and those who had more than five symptoms when they first got sick with COVID-19 were also at higher risk for long COVID.

At Stony Brook’s Post-COVID Clinic in Commack, which has seen about 500 patients since it opened in November, fatigue, shortness of breath, and muscle aches and pains are the most common symptoms, said Dr. Sritha Rajupet, the primary care lead at the clinic.

Jenna Palladino, a psychologist who helps oversee outpatient behavioral health for Stony Brook, said she founded the online support group more than a year ago because "we were hearing a lot of stories of survivors feeling alone and isolated" by long COVID and by their doctors’ inability to tell them how long their symptoms will last — or if they’ll ever go away.

"It’s really enhancing the anxiety and depression they’re feeling," she added, and "that uncertainty about not knowing what the long-term trajectory is for their well-being is very scary."

The support group, which has seven members, creates "a safe space, an opportunity where group members can come together and share their experiences with a group of people who … get what it’s like, even if their symptoms may be different," Palladino said.

In addition to the Stony Brook group, there is a state-run, statewide weekly online "COVID longhauler" support group. The Mount Sinai health system, which includes Mount Sinai South Nassau hospital in Oceanside, has a COVID-19 support group in which most members have long COVID, doctors there said.

Crean, 55, tested positive for COVID-19 in April, three weeks after she got her second vaccine shot. She has seen at least 10 doctors since, but she’s had no real improvement.

Many people do eventually improve, Rajupet said, but "there are no known treatments for post-COVID at this time."

Crean said her fatigue is so "crushing" that she was unable to return to work as a preschool special education teacher at the Developmental Disabilities Institute in Smithtown. She had worked as a teacher for more than 20 years.

Even so, she said, her personal physician downplayed the severity of her fatigue. "At one point she said, ‘I have patients with fatigue. They go to work,’ " Crean said.

That doctor did, though, refer her to the Post-COVID Clinic, where Rajupet told her about the support group, whose members "really made me believe that I’m still sane, that I hadn’t just lost my mind."

"When you’re feeling sick and awful and you go to a doctor and you have them either disbelieve you or think it’s not so bad, it makes you question yourself," said Crean, who before the group asked herself, " 'Am I really not that sick?' "

Her husband and three sons have been supportive, but she said she has a hard time explaining to friends and extended family how long COVID has affected her life.

'... they’re not things your family, friends, co-workers and supervisors see, so it’s hard for them to understand the impact they’re having on your day-to-day life.'

Jenna Palladino, psychologist who helps oversee outpatient behavioral health for Stony Brook

Palladino said some people believe friends or family with long COVID are exaggerating their symptoms.

"So many of the long COVID symptoms aren’t necessarily physically observable, so something like loss of taste and smell, brain fog, chronic fatigue — they’re not things your family, friends, co-workers and supervisors see, so it’s hard for them to understand the impact they’re having on your day-to-day life," she said.

Food feels like rubber, sand in her mouth

Elizabeth Medina, 38, of Levittown, lost her ability to taste and smell after she was diagnosed with COVID-19 in March 2020, long before vaccines were available. She also has fatigue, lost more than half her hair and has neuropathy on the right side of her body. But, in a sign of how so much about COVID-19 is unknown and at times inexplicable, she has never had a persistent cough or breathing problems, even though she has asthma.

For more than a year, she turned down every social invitation because of the difficulty in conveying how devastating it is to not be able to taste food, and to be repelled by how some food feels like rubber or sand in her mouth.

"I don’t want to be retraumatizing myself and have people telling me, ‘It’s OK, let’s just have a good time,’ when I’m not having a good time seeing and hearing how good [the food] is," she said.

When her husband bought her perfume — something she always loved — for Mother’s Day, "I just started crying" because she couldn’t smell it, she said.

He apologized, but it was "beyond traumatic," she said.

'I'm so tired, I don't know how I work.'

Elizabeth Medina, 38, of Levittown

Medina has continued working as a guidance counselor for a New York City public school, but, "I'm so tired, I don't know how I work. There are days I just have to push myself."

The support group has been critical to helping Medina cope.

"Just having people listen to you and not judge you, to validate your feelings and share their own experiences" is key, she said. "Sometimes when I’m sharing, someone will step up and give me that empowerment and say, ‘It’s going to be OK. It happened to me and I’m better,’ and vice versa."

Some people who couldn’t taste or smell left the group after their senses returned.

"It gives me so much hope," she said. "I’m like, ‘If it happened to them, maybe it will happen to me, too. Maybe I’m next.’ "

Cassandra Rebecchi, 37, of Centereach, has spent nearly as much time as Medina unable to taste and smell. In March, she began to smell and taste lemons — and the smell and taste were "rancid," not at all what lemons usually taste like, she said.

"It kind of gave me hope that maybe other smells and tastes will follow," she said, but they never did.

Rebecchi got her first vaccine shot shortly before she was able to taste lemons again, so she wonders if the vaccine triggered something in her. But, even after her second shot, she still can't taste the true flavor of lemons.

Others at the Stony Brook Post-COVID clinic have seen more significant changes after inoculation. About half of the clinic's patients reported improvement in their symptoms post-vaccination, but the other half had no changes, Rajupet said. Several surveys of long COVID patients, as well as anecdotal reports by doctors, indicate the vaccine can help with symptoms in some people. But the CDC cautions that scientific studies are needed to determine the effect of vaccines on post-COVID conditions.

Rebecchi said there have been two fires in her toaster oven because she couldn’t smell the food burning, and she and her husband installed gas detectors in case she forgets to shut off the gas. She said her family has been supportive, but it’s impossible for them to understand what she’s going through.

'It’s caused a lot of anxiety, because I don’t know if and when it will come back.'

Cassandra Rebecchi, 37, of Centereach, about the loss of her senses

"It’s caused a lot of anxiety, because I don’t know if and when it will come back," she said of her senses.

The support group has been key because "just knowing there’s somebody else out there" dealing with lingering symptoms and an uncertain prognosis is helpful, she said.

Disease led to 25-pound weight loss

Zina Seguino, 53, of Copiague, first felt sick in December, with symptoms such as diarrhea and loss of appetite, which led to her losing 25 pounds in a few weeks.

She didn’t test positive for COVID-19 — something Rajupet said occasionally happens with people with the disease — so doctors at first didn’t believe her condition was related to the virus, although they were unable to explain it. An infectious disease doctor finally diagnosed her with COVID-19 in the spring.

A few symptoms, such as extremely dry skin and nausea, have improved or gone away, but her difficulty thinking and concentrating got worse, and she began losing hair and getting a burning sensation in her lips, tongue, throat and eyes.

"It’s paralyzing," she said.

Seguino can't get vaccinated because of allergies to vaccine ingredients, so she's become increasingly nervous in recent weeks as she's seen fewer people in public places, including grocery stores, wearing masks, and as her 13- and 16-year-old children returned to school. She worries another coronavirus infection would worsen her symptoms.

'You don’t have to pretend to put on a smile.'

Zina Seguino, 53, of Copiague, about the support group

The support group, which Seguino joined in August, is "a safe place for us to be able to be ourselves. You don’t have to pretend to put on a smile."

Talking with others anxious about their future and frustrated by others’ inability to understand what they’re going through "is almost like a weight lifted off my shoulders," she said. "It gives you a level of comfort. We’re all there just to be supportive with one another."

By David Olson

david.olson@newsday.com@DavidOlson11

David Olson covers health care. He has worked at Newsday since 2015 and previously covered immigration, multicultural issues and religion at The Press-Enterprise in Southern California.