With so much still unknown about long COVID, Wendy Thomas has accepted that managing her myriad of debilitating symptoms will require trial and error. So, when her doctor prescribed Adderall for her struggle to focus, even to understand a paragraph, she agreed to give it a try.
Thomas’ insurance company was less agreeable. She was told her prescription would be covered only if she had a diagnosis.
That’s an impossible ask for those suffering with long COVID because there’s no way to confirm the illness. It cannot be diagnosed through a test, exam, x-ray, or any other tool. Nor is it possible to make a diagnosis based on symptoms. One patient may suffer severe fatigue and respiratory challenges, while another may have body aches and heart palpitations. A third could experience gastrointestinal infections severe enough to trigger malnourishment and dehydration. Others see dormant conditions like Lyme disease return.
“Insurance companies don’t recognize Lyme disease fully, and they can’t play that game with long COVID because people are going to die,” Thomas said. “They’re going to have to recognize that we don’t have answers right now. They’re going to have to accept that people are going to be getting alternative therapies. I mean, some people try acupuncture. That’s never worked for me, but some people try it. And it might work. We don’t know.”
Demand for a diagnosis that’s impossible to make has also been a roadblock for some seeking disability benefits or work accommodations when approaching the providers and agencies that determine benefit eligibility.
“It’s new and a lot of medical providers don’t understand long-haul COVID,” said Nashua attorney Janine Gawryl, who helps long COVID clients get disability benefits. “And some are skeptical of it. And it’s even worsened by the fact that symptoms are not measurable. There is great skepticism often of these claims because the decision makers have to decide whether people are faking or simply lazy. It’s much simpler to prove a disability if you have an x-ray, blood test, or exam that can confirm it.”
Some, like Thomas, can’t even produce a positive COVID-19 test because when she became ill in early 2020, her gastrointestinal symptoms were misunderstood as food poisoning and irritable bowel syndrome, and testing wasn’t readily available. Her physician concluded she had long COVID based on her high antibody count, loss of taste and smell, close exposure to a friend who’d tested positive, and the similarity between her lingering symptoms and those of other COVID-19 patients.
“He said, ‘You know, if it looks like a duck and quacks like a duck, it’s a duck,’” Thomas, 63 of Merrimack, recalled. “He said we’re going to call it COVID because that’s the only thing we have right now.”
Laurel Carter, 35, couldn’t get a diagnosis until she was seen at Dartmouth-Hitchcock Medical Center’s long COVID clinic. Like Thomas, her symptoms began at the start of the pandemic.
“I kept getting tested for different things, and essentially some doctors said, in so many words, there’s nothing wrong with you. You’re fine,” she said. “And I couldn’t walk up stairs without stopping when I had been an athlete my whole life.”
Shrouded in confusion and secrecy
It’s no wonder there’s so much confusion and awareness surrounding long COVID. It’s defined broadly as ongoing health problems that cannot be explained by another diagnosis. And those with it, especially women, say they reveal little about their condition for fear of losing a job, facing a physician’s disbelief, being dismissed as weak, or accused of exaggerating their illness for attention.
“I don’t look sick and many people, I have realized, are just not empathetic or understanding if it’s not something that they can’t see. And so I’m very wary about talking to people about any of this,” said Robin Skudlarek, 58, of Londonderry. “I think when you say constantly, ‘Oh, I’m having a really bad day,’ people think it’s in your head or you’re being a hypochondriac. I’ve learned who I can be honest with or who understands, and it’s actually a really small group of people.”
Skudlarek has not continued to work since becoming sick. But Carter and Thomas have. Carter, who does marketing for an online education company, has been able to do her job remotely and manage memory challenges by taking notes as she works.
“I do feel just not quite as smart as I used to be,” she said. “And I’m not as quick as I feel I used to be, so I’m very thankful that I can still do my job. I would imagine it would be incredibly difficult (to tell a boss about job limits) because at work you use your brain and when it’s not firing like it should, it can be stressful.”
It’s unclear how many people are navigating the illness, absent any reliable count of long COVID cases, by the state or federal government. But a new Centers for Disease Control and Prevention study shows it could be prevalent, estimating that one in five adults will experience long COVID.
Dartmouth-Hitchcock’s Post-Acute COVID Syndrome Clinic, the only one in the state dedicated to long COVID care, had 700 referrals in its first year and has seen or has scheduled to see about 400 people.
There’s also more to learn about who’s most vulnerable and what protections are provided by vaccination. Medical experts stress vaccination remains the best protection.
“Getting vaccinated and boosted reduces the likelihood of you getting infected in the first place, which then reduces the likelihood of every other consequence,” Dr. Aalok Khole, an infectious disease expert at Cheshire Medical Center in Keene, said in a recent interview.
Management, not treatment
Among the cruelties of long COVID is the absence of a cure.
Long-haulers can manage their symptoms only under the guidance of a provider, a clinic like Dartmouth-Hitchcock’s, the only one in the state, or quite often, suggestions from others suffering they’ve met in online support groups.
Thomas, a project manager for an energy efficiency consulting firm, has learned to work around her brain fog and difficulty focusing by writing everything down and reading documents for work early in the day, before she gets tired.
Far worse have been the persistent gastrointestinal issues that have at times left her doubled over in pain and visiting the bathroom 20 times a day. She’s down 57 pounds since losing her sense of taste and smell, and ability to eat most foods. For those intestinal challenges, Thomas has also come to rely on her nutritionist.
Thomas also continues to see her physician.
“At this point, my doctor is kind of floating the idea that I’ve got permanent damage, and I’m just going to have to just live with it and going to have to learn how to manage it,” she said. “After a year and a half, I tend to agree with him.”
Skudlarek, who also contracted COVID-19 at the start of the pandemic and has made several trips to emergency rooms, has struggled most with respiratory challenges, a terrifying experience for a lifelong runner and yoga teacher. She’s also experienced a high fever and heart palpitations.
She was given a half dozen inhalers to try. She was told to isolate at home until her fever subsided and discouraged from returning to the hospital unless she needed a respirator. Skudlarek spent 21 days in her bedroom.
“The body aches were off the charts like nothing I’ve ever had,” she said. “I’ve had the flu a few times in my life, and I thought that was horrible. I couldn’t even focus on anything, like a TV show or a movie. I was writhing in pain.”
Those symptoms were gradually replaced by new ones: low blood pressure, rashes, and stomach pain. She sought help from an allergy clinic in Massachusetts and a naturopath. She began taking antihistamines. Her symptoms improved after getting vaccinated.
Skudlarek also developed significant anxiety about contracting COVID-19 again.
“A trip to the grocery store was terrifying to me,” she said. “I know that sounds really bizarre, and I’m somebody who’s never been afraid of anything. It was awful.”
In December 2021, Skudlarek tested positive a second time and lost the health gains she’d made. Desperate for an alternative to inhalers and antihistamines, Skudlarek tried an herbal powder she’d read about online.
“I was like, what can it hurt?” she said. “It really started helping my stomach and like literally after the first dose I stopped having diarrhea. So it was kind of amazing.”
Carter travels from Boston to the Dartmouth-Hitchcock clinic because the physical and respiratory therapy she’s received helped mitigate her symptoms and emotional stress. She’s learned breathing techniques and slowly regained her endurance from one minute of activity to 30 minutes of movement. When she’s suffered setbacks, she’s been able to remain optimistic because she’s seen progress and feels supported by the clinic’s medical team.
“They have affirmed what other doctors had not, that we know that your tests are coming back like you’re fine, but I believe you that you are not fine and that something is wrong,” she said. “And it just finally felt like someone in the medical community had my back.”
The pushback long-haulers experience in medical offices has been repeated when they seek insurance coverage, disability benefits, and job accommodations.
The experimental nature of treating long COVID can be at odds with health plans that want clear evidence that a test or therapy is “medically necessary.” Ongoing health problems may require more medical appointments than are covered by a health plan.
“Long-patients experience multiple obstacles to obtaining the care they need for this novel condition – poorly understood symptoms, limited treatment options, uncertain prognosis, and potential denial of coverage for the care they need by their insurer,” the Center for Health Insurance Reforms at Georgetown University warned in an October blog post. “In the short term, patients with long COVID will need to understand their appeal rights should their health plan refuse to pay for their care.”
Andrew Demers, spokesman for the Department of Insurance, said the agency has not received complaints about insurance coverage denials. He urged those with concerns to call the consumer division at 1-800-852-3416.
“Since the onset of COVID-19, health insurance providers across New Hampshire have been working proactively with the (New Hampshire Insurance Department) to address testing and treatment issues,” he said.
Long-haulers may be entitled to job accommodations under the Americans with Disabilities Act, such as a part-time or modified schedule, remote work options, or permission to take frequent bathroom breaks, if their health impairments substantially limit a major life activity, such as reading, concentrating, or working. The U.S. Department of Labor has issued guidance on requesting workplace accommodations.
Social Security benefits and short- and long–term disability coverage may also be an option, though each may have different eligibility requirements. Jake Leon, spokesman for Health and Human Services, said the department has received 15 to 25 disability claims related to COVID-19 or long COVID. He did not provide the outcome of those claims, including the number approved.
But these options can be challenging to navigate, said Gawryl, especially for those sidelined with chronic fatigue and brain fog.
“As more time has passed, entities have learned and mastered the process of denial and how to support a denial,” she said. “And they have been successful because (people with disabilities) are the easiest people to deny because they don’t have the capacity to fight back. And because they are disabled, they don’t have the income to pay for an attorney to fight back. They are often victimized by their incapacity.”
Thomas, a former state representative, would like to see the Legislature establish a commission to review the insurance industry’s handling of long COVID. Physicians also need to better understand symptoms, and she wonders how schools will support students who develop long COVID.
“We are going to have to do a lot of education,” she said.