What It's Like to Live With Long COVID: 2 Women Share Their Stories

After getting her COVID-19 booster last October, Kim Seaman felt safe. But in January she and her family started getting sick and tests confirmed they had breakthrough cases of the illness. Though everyone else got better, Seaman kept getting worse.

“The exhaustion kept growing and growing,” she says. “It was such an extreme exhaustion I couldn’t get out of bed except to go to the bathroom.”

When Seaman felt good enough to get out of bed she discovered that climbing just a few stairs sent her heart racing. Moreover, her balance was off; her thinking was foggy; and she became severely sensitive to light. Seaman was so disabled by her symptoms she had to give up driving and even needed a wheelchair to attend her son’s college graduation.

“My life looks completely unrecognizable to me,” says the 53-year-old stay-at-home mom and dog breeder. “I can’t drive or do anything I used to do.”

The long COVID-19 numbers are scary. In a Centers for Disease Control and Prevention study that included 300,000 patients researchers found that one in five of those aged 18 to 64, and one in four of those aged 65 and older, reported the persistence of at least one of the panoply of symptoms — such as crushing fatigue, musculoskeletal pain, heart problems, kidney failure, blood clots and diabetes — that can be hallmarks of long COVID.

Estimates of the impact of vaccination on the likelihood of developing long COVID have varied widely, with the latest study finding that being fully vaccinated cut the rate of long COVID by a mere 15%.

Seaman initially didn’t know what to make of her wide ranging symptoms. But by April she was starting to think she might have developed long COVID. In May she started seeing doctors at a clinic that specialized in treating long COVID.

One of her doctors there says Seaman’s symptoms are typical of what many long COVID patients describe. “Fatigue is a big one,” says Dr. Jignasa Puri, a physician at Scripps Mercy Advanced Care Clinic and COVID Recovery Program. “And decreased endurance, shortness of breath, heart palpitations, brain fog and, early on, chest pain. Some have neurological symptoms, like trembling hands, light headedness and insomnia.

It’s thought that the underlying cause might be systemic inflammation kicked off by infection with SARS-CoV-2 , but right now, no one knows for sure, Puri says. “I think everyone wants a magic pill and so many diseases don’t have one. The goal becomes managing symptoms.”

And with so many symptoms to try to manage, Puri tells patients to pick two or three to work on. Often she says, if those symptoms improve, others will follow. None of Puri’s patients have come back 100% so far. But they do improve. “I try to get them to understand if they get to 90% of where they used to be they should celebrate that,” Puri says.

With nearly 90 million Americans infected by the virus that causes COVID-19, one in five or four translates into a lot of people, some of whom are so severely disabled they can’t go back to work.

Keighan McGoff is all too well aware of that.

Initially it looked like her breakthrough infection in December of 2021 was going to be mild. In fact, after two weeks most of McGoff’s  symptoms had resolved. But around the same time she started experiencing a severe loss of balance. “I was so extremely dizzy that I couldn’t walk without looking drunk,” the 26-year-old Bostonian remembers. “Just trying to walk across the kitchen I would sway like I was drunk.”

There were other symptoms, too. McGoff started feeling pain in her chest and she began to have fainting spells, brain fog and severe fatigue. She had trouble moving forward and felt like she was dragging her feet through thick, deep mud. The dizziness and fainting spells derailed McGoff’s budding career as a cabinet maker. There was no way she could work at a job requiring power tools.

For months neither McGoff nor her primary care physician thought her symptoms were signs that she had developed long COVID. Her doctor initially worried that McGoff might have had a stroke and sent her to a neurologist. Imaging didn’t show signs of a stroke and the neurologist, who wasn’t sure what the underlying problem was, arranged for physical therapy to help with the balance and dizziness.

It wasn’t until the end of June that McGoff finally got a referral to a long COVID clinic. She’s still waiting for an appointment there. In the meantime, she can’t drive, has no job and is expecting to be homeless by the beginning of August. When she turned 26 she was dropped from her parents’ health plan and is now only able to get care through MassHealth, her state's insurance program.

The nation hasn’t come to grips yet with costs of long COVID, says David Cutler, a professor of economics at Harvard University. Between lost quality of life, lost labor income and additional medical spending, the costs are enormous, Cutler says.

“People have been focusing on deaths, not on how many long-term impaired people there are,” Cutler says. “Our first priority is figuring out how many people have long COVID and how to treat them,” he adds. “Then, as a society we will need to figure out how to manage with an estimated two million people out of the labor force.”

McGoff says people like her are going far too long without a diagnosis and help.

“It feels like a massive abandonment,” McGoff says. “I feel like there should be something out there to catch people in positions like mine."

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