Living with Long COVID

by CHRIS BURRITT

After losing her senses of taste and smell due to COVID-19, Patty Brookbank worried that meals she prepared for her husband, Dave, wouldn’t taste the same. It actually didn’t matter. He couldn’t taste or smell, either.

In their mid-70s, the couple survived the virus in 2020, and they eventually recovered – for the most part –from what’s known as Long COVID. Like other so-called “long haulers” still suffering from the condition 3 ½ years after the start of the pandemic, the Brookbanks are coming to terms with the possibility that their lives won’t ever be the same.

“It’s been life-altering,” Brookbank said in an interview earlier this week. She and her husband live in Rockingham County, though they have family ties in northwestern Guilford County.

Taking a break in her kitchen from canning spaghetti sauce made from homegrown tomatoes and fresh ingredients, Brookbank said, “I could smell the thyme. I’m really thankful for that.”

On the other hand, Brookbank’s recovery of smell isn’t complete. As examples, she said, coffee and her Chanel perfume “don’t smell the way they’re supposed to.”

Such unexpected and inexplicable changes are common among the one in six North Carolinians diagnosed with COVID who have experienced symptoms of Long COVID. That’s an estimate from the state’s Department of Health and Human Services (NCDHHS), citing a National Center for Health Statistics’ online survey that in 2022 added questions related to Long COVID, also known as Post-COVID Conditions.

“People with Long COVID have symptoms for four weeks or more, and they can last for months or years,” NCDHHS said on its website. “Even people who did not have severe symptoms at first can develop Long COVID.”

Getting at least one dose of a COVID vaccine lowers the risk of developing Long COVID, suggested a study published online in December 2022 by the Antimicrobial Stewardship & Healthcare Epidemiology journal.

An uptick of infections over the summer is prompting medical professionals to remind people to get vaccinated if they haven’t already. The same goes for unvaccinated people who’ve already had the disease, according to a Harvard Health Publishing article in March.

“Many people in the United States have some protection, or immunity, against COVID-19 due to vaccination, previous infection, or both,” according to a post on the website of the U.S. Centers for Disease Control and Prevention. “This immunity, combined with the availability of tests and treatments, has greatly reduced the risk of severe illness, hospitalization, and death from COVID-19 for many people.”

NCDHHS describes Long COVID as “a real and serious condition” that can result in a disability recognized under the Americans with Disabilities Act.

“It takes many different forms, and it is not one illness,” NCDHHS said. “We are still learning how to treat it.”

“Tiredness or fatigue that interferes with daily living” is one of the wideranging Long COVID symptoms defined by the CDC. Others include respiratory and heart-related symptoms such as shortness of breath and chest pain.

Neurological symptoms range from lightheadedness to difficulty concentrating to depression or anxiety, the CDC said. Digestive problems and joint and muscle pain are other symptoms.

For medical professionals, long COVID can be difficult to pinpoint, said Dr. Chan Badger, a physician with Novant Health Northern Family Medicine in Greensboro.

“There’s no specific diagnosis for it,” Badger said. “There’s no lab test, there’s no X-ray test. It’s really more about a conglomerate of symptoms in the post-acute phase after someone has been diagnosed with COVID.”

“It’s tough, because some of these symptoms can blend in with other chronic disorders,” added Dr. Jeffrey Greene, a physician for Cone Health’s LeBauer HealthCare at Summerfield Village in Summerfield.

“As primary care providers, we look to see what kind of impact the symptoms are having on (patients’) daily functioning,” Greene said. “How much is it interfering with their daily life and their home life and their work life?”

Among the approximately five Long COVID patients Badger has treated, he kept one of them out of work for 12 weeks “just to allow him more time to get better.

“He was really dizzy and lightheaded (and) certainly depressed,” Badger said. “He also had significant shortness of breath and fatigue. And it was really interfering with his ability to perform his job.”

For 2 ½ years, Claire Surette said she’s had no sense of taste or smell. The loss of those senses prompted her to get checked for COVID-19 in December 2020, and the test turned out positive.

After spending three days in bed due to flu-like symptoms, Surette recovered, except that she “couldn’t taste flavors.”

“I can tell if something is sweet, salty, sour or spicy like a seasoning,” said Surette, 21, who grew up in Oak Ridge and now attends UNC-Wilmington. “If you line up every Propel water flavor, blindfold me and had me taste them, I would tell you they’re all just sweet water.”

When she’s eating, Surette describes herself as “a lot more of a texture person” than before she contracted the virus.

Macaroni and cheese is one of her favorite dishes, but she only eats it now if it’s baked and “a little bit thicker and less squishy,” she said. “I won’t eat super squishy foods anymore.”

For about a year, Surette said her condition was “very upsetting. But I don’t get emotional about it anymore. It’s kind of like my everyday life now.”

Understanding the causes of Long COVID and treatments for the condition is “going to take decades,” even though clinical studies and research are underway, according to Badger.

“It’s too early to have produced anything that is super practical,” said Dr. John Sanders, chief of infectious diseases at Wake Forest Baptist Health in WinstonSalem. He’s also a professor at Wake Forest University’s School of Medicine.

“We are largely relying medically on the treatment algorithms that were developed before COVID,” Sanders said. “We’ve known for centuries that for some people who get an infection, it will trigger longer symptoms.”

Due to the lack of science around Long COVID, physicians are limited in what they can tell patients. The lack of a guarantee that patients will get better draws mixed reactions, Sanders said.

“Based on our prior experience with other infections and what we’re already seeing with COVID, these symptoms tend to improve,” he said. “People don’t die from this. It can last weeks, months, even