Long Islanders struggle with life-altering health problems from long COVID

The symptoms can be so debilitating that some of those who live with the condition can no longer work or must cut back on hours. At times, they struggle with severe fatigue, breathing problems, balance issues and trouble concentrating.

Long COVID — an insidious condition left behind after the virus initially strikes — has changed, in some cases even ravaged, the lives of tens of millions, including many on Long Island.

Martha Raffloer of Wantagh hasn’t worked since she first got sick with COVID-19 in January 2021. She still relies on supplemental oxygen to help her breathe. Like many others with long-term effects of the virus, her future is uncertain.

“I don’t know what the new me looks like,” she said. “I don’t know what the new work me looks like. I still don’t know what the end of the line is: Is this as good as you’re going to get and you’re not going to get any better?”

Long COVID is defined by the Centers for Disease Control and Prevention as ongoing health problems four or more weeks after infection.

The resulting unemployment or underemployment can lead to financial problems, depression and, for those still working, tension with employers, experts and people with long COVID said.

Nearly 1 in 5 adults who had COVID-19 reported having symptoms three months later, according to June federal surveys analyzed by the CDC. A separate CDC study of medical records of people with COVID-19 found a similar percentage with long COVID symptoms.

Raffloer spent 122 days in the hospital with COVID-19, but others with long COVID initially had either mild or no symptoms, the CDC says.

Fatigue, headaches, concentration problems, hair loss and difficulty breathing are among the most common long COVID symptoms, studies have found.

Jane Homan, 53, of Farmingville, was never hospitalized with COVID-19. But a few weeks after she first got sick in June, new symptoms emerged, and what had initially been a mild breathing problem became more severe.

Homan works as a bookkeeper for a tax and investment firm. She’s usually only able to work four hours a day, although recently she’s been trying to make it to five or six.

“I get very tired,” she said. “I have a hard time concentrating. After a while, I tend to just gloss over things.”

Her “brain fog” gets worse as the day goes on, and she’s worried about making mistakes.

“You’re playing with people’s money, whether it’s bookkeeping or investments,” Homan said. “I have to make sure it’s right. I sometimes have to check two, three or four times.”

“Thankfully, I have a very understanding boss,” she said. But Homan worries if she’ll be able to handle the deluge of work when tax season begins in January, and she and her husband are having difficulty making ends meet with the loss of income, she said.

“We struggle to pay the utilities, we struggle to pay the mortgage, we struggle to put food on the table,” she said.

Dr. Sritha Rajupet said almost all the more than 900 people who had been patients at Stony Brook Medicine’s Post-COVID Clinic in Commack had shown some improvement in long COVID symptoms. But few have returned to their pre-COVID-19 health, said Rajupet, primary care lead physician at the clinic.

Some people with milder long COVID symptoms may recover more quickly and completely, she said.

There is no known treatment for long COVID, only medication and therapies for some of the symptoms, Rajupet said.

“Knowing there is no cure, we spend a lot more time talking about what it’s like to have a new chronic illness,” she said.

Dr. Jenna Palladino, a psychologist with Stony Brook who founded an online long COVID support group, said the ailment can cause anxiety, depression and other mental health problems, or exacerbate existing issues.

“Working and participating in life is a core part of our human experience that people get a lot of benefit out of,” she said.

“So not feeling as competent or productive as you used to, whether that’s work within the home or work outside the home, can really impact mental health over time.”

Especially frustrating for some with long COVID is that others, including doctors, sometimes don’t believe they’re really sick, or that they’re exaggerating symptoms, Palladino said.

Dr. Gita Lisker, a pulmonary disease doctor at Northwell Health who runs a post-COVID-19 program for those with lung issues, said testing for some common long COVID symptoms like fatigue “almost always comes out normal.” That and other issues, including the complexity of long COVID cases, mean some doctors don’t want to treat long COVID patients, she said.

Kristine Anthony, 48, of Selden, has seen many specialists since she first got sick in December 2020. She lost her child-support enforcement job after she was out sick on medical leave for more than a year.

“I’ve been working since I was 14,” she said. “It’s an emotional struggle to not be working. It’s been an identity crisis.”

Anthony said she has reactive airway disease that makes it difficult for her to breathe, along with functional neurological disorder that can cause her to sometimes lose her ability to walk or speak.

“COVID is taking away a lot of dignity,” she said. “I’m very young and sometimes I feel like an old lady.”

An August Kaiser Family Foundation analysis of several surveys and studies found that adults with long COVID who had worked before their infection were 3½ times more likely than all adults pre-COVID to be out of work and nearly 50% more likely to be working reduced hours.

A January Brookings Institution analysis concluded that long COVID may account for up to 15% of unfilled jobs nationwide and could be contributing to the labor shortage.

Jeremy Schneider, 51, of Baldwin, has been working full time as chief technology officer for a Manhattan nonprofit, despite fatigue, brain fog, asthmatic reactions, tremors and sleeping problems.

He only goes to the office once a week — most employees go a minimum of three — but his employer has been asking him to go in twice. The last time he tried that, in the spring, his symptoms worsened.

At home, he said, he is more productive and can focus more.

“I let my brain have some moments of not doing anything or not doing anything serious,” he said. “I find that helps me to focus and do my work.” He works later hours to make up for the breaks, he said.

Raffloer has post-COVID-19 pulmonary fibrosis. Her breathing has improved, but she said the scarring in her lungs means she’ll never be able to breathe normally and will always need supplemental oxygen.

She has resigned herself to never returning to her job as a senior account manager for a health care company, because she couldn’t handle the long hours, high stress and regular travel.

Despite the debilitating breathing issues and other problems, including constant muscle and joint pain, Raffloer said that “every day I’m grateful” — because she’s alive.

“My daughter started kindergarten,” she said. “That was something I wasn’t sure I’d ever see. My son is talking and he’s going to turn 3 in December. I wasn’t sure I was going to see that. ... The material stuff, we’ll figure it out. That stuff isn’t trivial because you have to survive. But compared to dying and my kids not having a mom or my husband not having a wife or my mom not having a daughter, all that is really secondary.”

Correction: Dr. Gita Lisker's first name was spelled incorrectly in an earlier version of this story.