Rosalynn Gingerich took every precaution five years ago when the COVID-19 stay-at-home order was issued.
The artist and educator at the School of Art Institute of Chicago wore masks, practiced social distancing and got vaccinated, but in the fall of 2022, she tested positive for COVID.
She’s been dealing with long COVID symptoms like dizziness, brain fog and extreme fatigue ever since.
Gingerich’s story is one of many. According to The Centers for Disease Control and Prevention, about 1 in 5 adults have a health condition that might be related to their previous COVID-19 illness.
Doctors are worried about how to provide care for Gingerich and other long COVID patients as many are experiencing life-altering symptoms. Experts at Chicago’s Shirley Ryan AbilityLab hope their comprehensive approach can provide solace to the invisible toll long COVID has on their patients.
In 2021, the AbilityLab opened an outpatient COVID Rehabilitation Unit to care for patients with long COVID, most of whom never required inpatient care for the initial infection.
According to the CDC, more than 200 long COVID symptoms have been identified, making diagnosis difficult. Some symptoms can be subjective, too. Something like brain fog, which Gingerich struggles with, can mean different things to different people.
“Does brain fog mean that you’re in the middle of working on a complex spreadsheet and you keep making errors, or you’re in a conversation and you can’t find your words?” says Marie Saxon, a senior speech-language pathologist at the Shirley Ryan AbilityLab and one of Gingerich’s doctors.
To treat her patients’ symptoms, Saxon and her team use what they call “pacing” or “symptom management.”
“We try to figure out what that means for each person. So that might mean for someone, I can work on my spreadsheet for 90 minutes, but then I start making mistakes, I start getting a headache. So we need to figure out what that break is, and then how soon after can you return to that activity,” Saxon says.
She says five years after the height of the pandemic, doctors are beginning to identify some patterns when it comes to improving cognitive function in long COVID patients.
“I think that’s been very comforting for people with long COVID to know they’re not alone,” she says. “There are other people that are experiencing this range of symptoms that can feel really random and scary, but know that it’s not just isolated to them.”
That includes patients like Gingerich.
When Gingerich was referred to the AbilityLab for physical therapy and then for speech therapy, she remembers feeling relieved that her doctors understood what she was going through. She says it was difficult for others to understand that she was struggling, even if she appeared well.
“I think probably the best analogy that I can give is living your life with a very short cell phone battery that constantly needs to be plugged in,” Gingerich says.
Her last therapy session was three months ago, and she feels fortunate to have the necessary tools to manage her symptoms. She doesn’t know if she will ever fully recover, but she has hope.
“It’s unknown to me where I will be five years from now, but I am completely optimistic,” Gringich says. “In my studio practice, I frequently say that in order to make the type of work that I make, I have to be ridiculously optimistic, because it’s complex and I feel like the same optimism is necessary for a recovery from COVID.”