BELFAST, Maine — When Shauna Bergstrom of Belfast hears people minimize the risks of COVID-19, or sees Facebook posts that dismiss the disease as no worse than the flu, she feels tired.
Of course, most of the time, she’s tired anyway. That’s because Bergstrom, 55, is certain she, her husband and son got COVID-19 back in March, just before the shutdown began.
It’s been seven months. They’re no longer contagious — but they’re still not feeling better.
Their symptoms include chronic fatigue, brain fog, nausea, blurry vision, odd taste, phantom smells, hair loss, headaches, muscle loss, heart problems and much more.
“When people say it’s just like the flu, I don’t think they realize,” Bergstrom said. “Financially, can they tolerate being sick for months? Mentally, can they tolerate it?”
You just don’t know when the next day will be a good one, she said.
Bergstrom and her family consider themselves part of a growing cohort of people who call themselves COVID long haulers. According to Harvard Health Publishing, long haulers are people who have not fully recovered from COVID-19, weeks or even months after first experiencing symptoms.
The conventional wisdom around the coronavirus is that it is most dangerous to older people or those with preexisting health problems. But previously healthy people, including young adults and even children, are experiencing post-COVID-19 syndrome. Some continue to experience a constellation of symptoms persistently, while others may feel better for a period of time before relapsing with old or new symptoms.
It’s hard to predict which patients will become long haulers, whose ultimate recovery trajectory is unknown because COVID is a new disease. But the sufferers already likely number in the tens of thousands in the United States alone.
Unpredictability is a feature of COVID-19 and its aftermath, according to Dr. Peter Millard, an epidemiologist from Belfast, who has little patience for those who dismiss the risks of COVID-19.
A study that examined “excess deaths” found that New York City had a similar death rate from COVID-19 in the spring as it did during the 1918 flu pandemic, which killed about 625,000 Americans. And even for those who recover from the disease, the problems they must cope with are significant.
“It’s a serious disease,” Millard said. “The disability associated with it is very high.”
Emily Rogals, 54, of Belfast, is another COVID-19 long hauler. Prior to late March, when she was infected, the professional gardener stayed active by taking care of her grandchildren, dancing and going to the gym.
“I could do 10 to 15 pushups, no problem,” she said.
But then her lungs began to hurt, a persistent ache that made routine things like talking and going up stairs somehow feel like she was running up a mountain.
At first she didn’t even tell her husband — a critical care nurse — how she was feeling.
“I just didn’t want to scare anybody,” she said. “Maybe if I just act like things are normal, it’ll be normal.”
After two weeks, though, she developed a cough and was constantly fatigued.
“I couldn’t really hide it anymore,” Rogals said. “I couldn’t do anything. I couldn’t go up my own stairs to go in the sewing room. I was just so tired all the time.”
In April, she went to Seaport Community Health in Belfast to see her doctor, but COVID-19 tests were only available to a small group of people then. So Rogals was diagnosed with walking pneumonia. She was prescribed an antibiotic and then Prednisone, a steroid used to treat breathing disorders, among other conditions.
But the treatments were like “doing nothing,” she said. All summer Rogals was stuck on the couch watching movies and cooking videos on YouTube. The lung pain, shortness of breath and fatigue wouldn’t subside.
Her doctor told her that other local COVID-19 long haulers were in the same predicament. Knowing she’s not alone has been “a lifesaver,” she said.
In the past month Rogals has started to feel better, though she hasn’t dared to test whether she can run, ride her bike or dash up stairs again yet.
“I’m just one of these unlucky ones, who got the long haul thing,” she said.
The gardener is terrified of getting sick again and gets frustrated when she sees people acting cavalierly about the disease.
“I think a lot of people feel that way if they haven’t got COVID,” Rogals said.
She doesn’t really believe the phrase “What doesn’t kill you makes you stronger.”
“That’s not true,” she said. “It gives you [post traumatic stress disorder]. It beats you down.”