'People can get sick and never recover': The unceasing struggle for COVID long haulers

If Heidi Heath was in charge of measuring COVID-19's toll, she'd do more than count cases, hospitalizations, and deaths. She'd share “long hauler" stories like her own.

This article was originally published at the New Hampshire Bulletin

“Keeping people alive is not the only measure of success," said Heath, 38, of Exeter, whose long COVID-19 began 17 months ago with flu and strep throat-like symptoms and continues today with chronic pain that has prevented her from resuming running. “People can get sick and never recover."

Heath worries she's one of them and fears for others given that about 40 percent of eligible Granite Staters are still not fully vaccinated. “One of the really hard things about this is reckoning with the reality that I'm living in the world as a chronically ill person," said Heath, who had asthma but no other serious health problems before COVID-19. “Do not assume that this can't happen to you."

An estimated 10 to 30 percent of COVID-19 patients develop “long COVID" symptoms, which are defined as symptoms that last more than 12 weeks after the acute illness. The most common are fatigue, especially after minor exertion; cough or shortness of breath; difficulty thinking and concentrating; depression and anxiety; muscle aches; rapid heart rate and palpitations; and headaches.

Nurse practitioner and infectious disease specialist Christina Martin has treated patients as young as 18 through her work at Dartmouth-Hitchcock's Post-Acute COVID Syndrome Clinic, the state's only program for people living with long COVID-19. The clinic has received about 300 referrals from New Hampshire and neighboring states. After evaluating patients, the treatment team matches them with medical specialists based on their symptoms. For some, that's a cardiologist. For others, it's an occupational therapist or neurologist. But it's never a cure because while the symptoms are known, the illness remains poorly understood.

Most studies have focused on the unvaccinated, who make up nearly 98 percent of COVID-19 cases. However, early research indicates the small percentage of vaccinated people who develop “breakthrough" cases can also develop symptoms of long COVID-19. Still, medical experts say the best protection against long COVID-19 is vaccination and continued mask wearing.

“I find that most of my job is to validate that what they're experiencing is real," Martin said. “And in that, we can support them either through physical support or mental support. They say, 'I feel better having talked to you. I feel like this is real, that I'm not crazy.' I think that that in and of itself is really helpful."

Like Heath, Kythryne Aisling of Concord contracted COVID-19 in March 2020, before a vaccine was available. And like Heath, she struggled to find a health care provider who recognized her lingering shortness of breath, exhaustion, and weakness as signs of long COVID-19. She joined thousands of other early long haulers and joined online support groups. She was one of about 3,000 members of the Long COVID Support Group on Facebook last year. Today, nearly 43,000 people have joined.

“I joked with a friend of mine who had COVID a week ahead of me that we were crowdsourcing our medical care," she said. “The doctors aren't believing us. Let's try to research this as best we can as laypeople."

Aisling said many of her symptoms still plague her to the point where she has “bad days" about 70 percent of the time. As a jewelry designer, Aisling is able to work around those bad days. “My customers don't care if I work at 2 a.m. or 2 p.m.," she said.

She considers herself lucky that not only did she avoid hospitalization but had already learned to live with intense and lingering pain as a brain cancer survivor and migraine sufferer. “I'm used to being in a body that doest work right," she said.

Aisling empathizes with people who are hesitating to get vaccinated for fear of side effects. “Yes, but it's so much less bad than actually having COVID," she said.

Monique Raymond of Newmarket just started her graduate work in integrative and organismal biology at the University of New Hampshire. She's grateful for the university's indoor mask policy and testing protocols.

Raymond, 30, and her husband got COVID-19 around Thanksgiving, but her extreme fatigue and body aches lingered. Her symptoms are far less frequent now but can be triggered by stress, a cold, or eating and drinking certain things.

But she wonders for how long. Raymond has a pre-existing autoimmune disorder. “My biggest fear is that this is a catalyst for another disorder or disease," she said.

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