While much of society has moved on from thinking about COVID-19 on a daily basis and taking precautions, the coronavirus remains a constant reality for those living with long COVID. And it’s both the stigma around disability and the struggles from symptoms, leaving some housebound, that can make long COVID so invisible.

There’s no one easy definition for long COVID, in part because there's so much variation in the severity of symptoms that persist beyond an acute infection, and in how long symptoms last.

According to data the Census Bureau collected in April and May for the Household Pulse Survey, 10.2% of adults who ever had COVID-19 are currently experiencing long COVID, and 27.8% of people who had COVID-19 at some point experienced long COVID. “Long COVID” in this case is referring to symptoms lasting three months or longer.

Researchers with a National Institutes of Health initiative found that long COVID was more prevalent and severe among people infected before the emergence of the omicron variant, and in people unvaccinated when they were infected.

Newington resident Kathy Flaherty, a disability rights advocate and executive director of the Connecticut Legal Rights Project, developed long COVID after contracting the coronavirus in March 2020. She had a fever, chest pain, and shortness of breath, which got severe enough that she went to the emergency room.

While she’s able to do a lot more now, she’s still not back to her 2019 self. She experiences fatigue and doesn’t know if she’ll ever be able to run a half-marathon, like she used to. Another struggle is getting insurance coverage for treatments deemed experimental.

“I’ve been fighting appeals with the insurance company over a year, and I could go out of pocket, but I refuse to go into medical debt, so I suffer,” Flaherty said in May.

Connecticut has clinics for long COVID, but doctors there also see hurdles and unanswered questions.

Hartford HealthCare's COVID Recovery Center

Dr. Naheed Van de Walle, a rehab medicine physician with Hartford HealthCare, conducts intake of patients who come to the system’s COVID Recovery Center, referring them to other various specialties. The center opened in fall 2020.

She said symptoms that remain for three months after the initial infection can be classified as long COVID, but diagnosis is difficult.

“There’s no blood test, no imaging,” said Van de Walle, who does a lot of telehealth visits. She said “if somebody has shortness of breath, we have to see what other pre-existing conditions the patient has that might cause shortness of breath.”

This also poses a difficulty with insurers, and Van de Walle said sometimes she has to fight for her patients. She compared this to when concussions weren’t acknowledged because CT scans came back negative.

The top long COVID symptoms she sees are shortness of breath, fatigue and brain fog. A poorly understood symptom is post-exertional malaise, which is different from fatigue because it’s activity-related: Someone might feel exhausted for a day or days after just doing chores. Van De Walle said a patient pushing themselves beyond their fatigue limit delays recovery.

There’s a lot of overlap in symptoms with chronic fatigue syndrome and fibromyalgia, so Van de Walle carefully asks patients if there’s been a change in fatigue level.

“Patients initially go through several specialists, and they feel very dismissed; they feel their symptoms are not recognized or they’re not validated,” she said. “When they come to a specialty clinic, it’s a relief to them, that they finally got validation of their symptoms. That’s something I hear time and time again.”

Van de Walle might refer patients to a physical therapist for fatigue, a speech therapist for brain fog, or a pulmonologist for shortness of breath and chest tightness. She said we’re still learning about the long-term effects of long COVID, and pulmonologists sometimes find pre-existing abnormalities exacerbated by a coronavirus case.

But “we are very limited in treatment options,” she said. An NIH study showed some improvement in fatigue and brain fog among long COVID patients taking naltrexone, a drug used to help alcohol and opiate addiction.

Van de Walle said what generally works best “is pacing yourself, so not overdoing it, not multitasking.” She also recommends frequent breaks from the computer, hydrating and not skipping meals.

“The downside is all these things take time, and people will get impatient,” Van de Walle said. One patient was feeling better and decided to spend an hour kickboxing but then relapsed for a week.

“You can never predict when a patient ― for which infection ― will get long COVID. It’s not consistent,” Van de Walle said, saying many patients may not develop long COVID after their first or second infection.

Yale’s Long Covid Multidisciplinary Care Center

Yale New Haven Health System’s Long COVID Center saw its first patient in March, though Medical Director Dr. Lisa Sanders said this isn’t Yale’s first effort. Four doctors in cardiology, pulmonary and neurology ran three clinics and came up with the design for the new clinic, for which Sanders was the first hire.

An internist, Sanders sees patients after they see a physical therapist and social worker. On Wednesdays, patients also see a respiratory therapist and go through spirometry, a test on pulmonary function or breathing.

The clinic sees four to seven new patients a day, who come from all over Connecticut along with New York, Massachusetts and Rhode Island, Sanders said. She starts off focusing on the toughest symptom, fatigue, for which there aren’t good treatments at this point. She said all staff can do is encourage patients to pace themselves.

“So often, when people get sick, as soon as they feel better they’re like, ‘OK, I’m going to throw myself back into my normal life, and for these patients, it’s often not possible,” Sanders said. “It takes a while to recover, a really long while.”

She said both vaccines and Paxlovid, Pfizer’s oral COVID-19 treatment, are helpful in preventing long COVID.

As for treatments, both she and Van de Walle referenced a study out of Yale that showed significant cognitive improvement in patients who took a combination of guanfacine and n-acetylcysteine, which have been used to treat traumatic brain injury. The downside is this was a very small study.

Sanders also noted that Yale School of Medicine professor Dr. Harlan Krumholz is researching whether giving a longer course of Paxlovid would help patients. He’s still recruiting for what will be a double-blind, randomized trial, where half the participants get Paxlovid and half get a placebo.

Sanders said there are a lot of misconceptions about long COVID, and some people don’t even believe it’s real, but it’s not like this is the first infection to cause long-lasting symptoms after people “recover.” She said this can happen after influenza and Lyme disease.

Sanders said about a quarter to a third of her patients come in thinking they have long COVID but actually have something else. She wrote the 2009 book “Every Patient Tells a Story: Medical Mysteries and the Art of Diagnosis,” and this mentality is reflected in her approach to long COVID.

“Listening to the patient’s story contains the answer more often than not,” she said. “You can try to figure out if there’s going to be a test that’s going to tell you something you didn’t know, but for these patients in particular ― and all patients really, but these patients in particular ― the patient’s story is going to tell you what you need to know, at least to get started.”