This story first published online at North Carolina Health News. 

One day in late April, Perdensal Springs took longer than usual getting ready for her job transporting seniors for the nonprofit PACE of the Southern Piedmont.

Lately, it’s been little things that get her tangled up: where she put her keys, had she made her lunch, what was her first stop.

Prior to this job, Springs had worked in transportation for the Charlotte Housing Authority because she enjoyed helping seniors. But after being out with COVID for two months, Spring’s work with the residents—some of whom have dementia—is a reminder of her own struggles with confusion and forgetting.

“Today, I took some medication to a lady’s house and forgot that she was supposed to sign the papers, so I had to go back,” says Springs, 62. “It should have been one trip but it ended up being two.

“My memory is just like a person with dementia. It’s like I’m falling into dementia. I have a grandson who’ll be turning 14. I want to make sure that I remember him. I worry about forgetting him.”

Not an exclusive club

Experiences like Springs’ have become alarmingly common among COVID survivors. 

According to a study published in the Annals of Clinical and Translational Neurology, even after the acute infection cleared, an overwhelming number of people who contracted the virus—but were never hospitalized—report a string of neurological problems including brain fog, fatigue, dizziness, headaches, numbness, and tingling.

Brain fog is the most common.

Commonly called post-COVID syndrome or long COVID, the National Institutes of Health only recently dubbed this condition as “Post-Acute Sequelae of SARS-CoV-2 infection,” or PASC.

Experts are still working to define it. Some consider patients to have the syndrome if they continue to have symptoms four to six weeks after their initial infection resolves; others say 12 weeks.

The seriousness of SARS-CoV-2 has been discounted among some because of what they say is a relatively low mortality rate, even as that death rate is actually orders of magnitude higher than for the seasonal flu.

Now, there is more and more evidence of people who didn’t even have severe cases of COVID being waylaid by this lingering, life-changing disease up to a year later.

A study published by researchers from the University of Washington suggests that 10 to 30 percent of COVID patients have one or more symptoms of long COVID, including intense fatigue, chest pain, brain fog, shortness of breath; loss of taste and smell are most common. Springs’ most persistent complaints are brain fog and shortness of breath.

That means that in the United States, where there are more than 32 million cases of COVID-19, as many as 9.6 million people may still be experiencing long haul symptoms after they no longer test positive for the virus.

In North Carolina, Blacks account for approximately 175,000 of the total coronavirus cases. If 30 percent of those survivors become long haulers, that would have a deep and lasting impact on the physical, emotional, and economic health of the community, a population that has less access to health insurance, care, and treatment than whites.

Researchers are still exploring what’s behind this mysterious disease. One theory says symptoms are due to the damage caused by the infection and subsequent inflammatory response. Because long haulers exhibit a variety of different symptoms, doctors, hospitals, and researchers are challenged to find the best way forward.

“We don’t have a lot of specific, scientific answers because it’s just all so new,” says John M. Baratta, co-director of the UNC COVID Recovery Clinic. “Through research, that’s what we and others have to figure out. Hopefully, as time goes on, science will catch up and we’ll have more to offer.”

Getting COVID

Springs noticed her first COVID symptoms in early November.

“I didn’t run a fever but I struggled to breathe. Trying to go upstairs was a job. It really took a toll on me,” she said. “Even just trying to get out of the bed and walk was really hard. I couldn’t sleep, or I slept at odd times.”

Two days later, Springs tested positive for the coronavirus.

“I cried. I had my asthma under control for 15 years, and I was trying my best not to get COVID because I knew it was gonna be hard on me. I’d tried my best to keep myself well, keep myself protected.”

Springs knew that working with a vulnerable, high-risk population also put her at risk. Nonetheless, she was shocked when she got sick.

“I played it over and over again in my head and kept trying to figure it out because it just didn’t make any sense,” she said. “But you work with the elderly and they have family members come and visit them.”

Fearing she may have blood clots and because she lived alone, Springs’ doctor pushed her to go into the hospital, but she resisted being admitted because her family wouldn’t be able to see her. Instead, she made two trips to the emergency room for oxygen. The scans showed her lungs looked like ground glass, a radiologic finding that has become a diagnostic marker of COVID infection.

Having lost two family members—an uncle in Charlotte and a cousin in Lancaster, South Carolina—to the disease, Springs can’t understand the laissez-faire attitude many still have about COVID.

Even after the devastating impact of the virus on the Black community, there are still Black people who think it’s no big deal, she said.

Treating the long haulers

For doctors looking to treat the long-term effects of the disease, it feels like they’re back in the early days of the pandemic, learning what works as they go.

Despite the staggering numbers, there’s no clear way to diagnose long COVID and no standard treatment protocol. Some long haulers feel better after a couple of weeks following the initial infection but then fall ill to old or even new disease-related symptoms that may affect multiple organs and systems, weeks or months later. For others, like Springs, their symptoms never fully abate after the initial infection; they just linger.

PASC is sometimes compared with misunderstood ailments, such as chronic fatigue syndrome. Similar to those patients, many long-haulers struggle to have their symptoms recognized and taken seriously. Sometimes clinicians take a full medical history and assess all COVID-19 symptoms from the beginning of the infection. They may also run a battery of tests to rule out any other possible causes of the symptoms.

Post-COVID recovery clinics like the one at UNC are springing up across the country to address COVID-19 aftercare issues. These clinics typically take a multi-disciplinary approach to caring for the myriad problems that can plague survivors. Pulmonologists treat lung and breathing issues; cardiologists are onboard to handle heart problems; social workers and mental health professionals weigh in on the best way to address mental health problems.

Recovered but not well

After nearly eight weeks, Springs no longer tested positive for the virus. She returned to work in early January already knowing that there’s a difference between no longer being infected and being recovered. She struggled to do the things that had once been easy for her.

“I didn’t know where I’m going. I was in the house for so long, I didn’t know how to drive. I had to get comfortable with driving again,” Springs says. “When it came to the people that I knew so well, I knew their faces, but I couldn’t remember their names until somebody said it.”

Springs says her pulmonologist told her that it would take six months before she got completely better. She’s into her seventh month and still struggling to breathe.

“Now, coming up and down the stairs is hard even after doing the inhalers.” She pauses and sobs softly. “Sometimes I think maybe I’m being impatient but it’s taking too long for me to get it together. I have to get it together.”

Nobody really knows how long that will take.

North Carolina Health News is an independent, non-partisan, not-for-profit, statewide news organization dedicated to covering all things health care in North Carolina.