Over two and a half years after Detroit resident Ryan Sharpe got COVID-19, he still hasn’t recovered. Sharpe still experiences extreme fatigue, loss of strength and stamina, impaired cognition, a lower stress tolerance, and impacts on his gait.
“Over time, it’s gotten a little bit better, but just interacting with people takes a lot of energy. At one point in time, … even talking over the phone made me tired [and] stressed me out,” Sharpe says. “I definitely can’t be in large crowds of people. Going into gatherings for an extended period of time, I can’t really do that either. So it’s just affected all parts of my life.”
Sharpe’s symptoms represent just a handful of the wide range of conditions reported by “COVID long haulers,” including shortness of breath, loss of taste and smell, pain, heart palpitations, headache, sleep problems, lightheadedness, depression or anxiety, rashes, and digestive difficulties. More than 700,000 Michiganders now report living with “long COVID,” and Michigan health care organizations are racing to determine what support they need and how best to provide it.
One of those organizations is Detroit-based Henry Ford Health’s (HFH) COVID Recovery Care Service, where Sharpe is a member of the HFH COVID Recovery Care Patient and Family Advisory Council. The council includes patients and caregivers who advise and provide feedback on their experiences and care. Council members have also taken part in a long COVID research project that uses body mapping as a means to survey COVID long haulers on how the lingering disease impacts their bodies and lives. 
A body map drawn by one of the COVID long haulers in Henry Ford Health’s project.
Dr. Sara Santarossa, lead researcher on that project, explains that each long hauler drew a life-size body map that visually depicts the symptoms they experience along with a key that explains what the images represent. They also wrote stories telling how long COVID affects their lives. Santarossa was surprised that even though the body maps were done individually in virtual sessions, many used the same symbolism to portray what they were feeling.
Dr. Sara Santarossa.
“Brain fog is a symptom that’s quite common. We saw the same symbolism, a cloud around their heads. Respiratory issues were often depicted by flames in the lungs or lungs bound by twine. They represented heaviness in their limbs by drawing or using photographs of 100-pound weights at their feet,” Santarossa says. “For providers who have seen the work, I think it has really shifted the mindset around long COVID and the dire need for research and treatment options for this condition.”
A body map drawn by one of the COVID long haulers in Henry Ford Health’s project.
This project is the first to use body mapping via virtual sessions to gather data in researching a disease.
“It was an independent reflection process for them. So for the similarities to be happening, when people are working in totally different spaces, is very interesting,” Santarossa says. “We’re finding out what their questions are, what their needs are, and what the gaps are from their lived experiences.”
A body map drawn by one of the COVID long haulers in Henry Ford Health’s project.
Researchers hope that the results will inspire more research with the goal of finding means to relieve COVID long haulers’ symptoms. In the meantime, Sharpe says participating in the project and connecting with other long haulers has already been therapeutic for him.
“I decided to take part to get my story out there. Maybe I can help somebody or provide some type of motivation or inspiration,” he says. “… It’s really making me think about my experience and what I’ve been through and how the doctors are out there looking for some type of help. It’s been an excellent experience that I do enjoy.”
Kids with long COVID find help at C.S. Mott
At the C.S. Mott Children’s Hospital Pediatric Post-COVID Syndrome Clinic, pediatric pulmonologist Dr. Ixsy Ramirez sees kids who are experiencing one of the chief symptoms that the youngest long haulers experience: shortness of breath. She also assesses what other specialists her patients may need to see based on other symptoms.
When dealing with shortness of breath, Ramirez and her team determine if inhalers or other medications can help the child. For some, these solutions help; for others, these make no difference at all. If the child is old enough to follow instructions, Ramirez may order lung function testing.
Dr. Ixsy Ramirez.
“In terms of brain fog, there’s a percentage of kids that can’t really do their assignments or focus on school as well as they should,” she says. “It’s been challenging to do neuro-psychiatric testing. A battery of tests, like Sudoku or brain puzzles, that takes hours to do. After they review the results of that test, they then try to come up with a plan for the student to try to help them move forward and [identify] strategies that they can use.”
Ramirez finds it frustrating that few places offer such testing, and wait times to get in are very long.
“Some students we were seeing last school year were hoping that they could get testing done before the beginning of this school year,” she says. “For some, that hasn’t been possible, so they’re still struggling.”
Other challenges for Michigan’s young long haulers include fatigue and pain.
“I don’t think anybody can really pinpoint why there is this dramatic fatigue that’s associated with COVID,” Ramirez says. “Their pain gets managed mostly through our physical medicine and rehab doctors because they’re the ones that know how to handle pain. They’re doing their best to incorporate their usual strategies for fatigue and pain, but COVID is a different playing field.”
Ramirez agrees with Santarossa that more research is essential to help young long haulers overcome symptoms that are impacting their academic performance and mental health.
“Those kids that don’t actually fully recover [will] be in this category of kids who have to deal with chronic diseases,” Ramirez says. “I would think they will have mental health concerns, asking themselves, ‘Why me? Why am I not better?’ … There’s a good portion of them that you can tell that it’s taking a toll on their outlook on life.”
Long haulers need long-term solutions and support
A May 2022 study by the Center for Health and Research Transformation (CHRT) at the University of Michigan determined that long COVID could be a major economic burden on families and the state of Michigan due to its impact on personal financial wellbeing, the workforce, and health care costs absorbed by individuals, the state, and health care systems.
Jonathan Tsao.
“There was a significant difference between long haulers in their financial situation compared to [those who do not have long COVID],” says Jonathan Tsao, study author and CHRT research and evaluation project manager. “There are two main reasons for this. One is their decreased ability to work at a full capacity. They are more likely to work reduced hours, quit their jobs altogether, or get laid off — and they would be more likely to miss out on a promotion. And they have to deal with increased medical costs.”
Lack of awareness among employers may lead to unfair expectations for long haulers. Those same workers may be unaware that disability insurance does cover long COVID.
“We suggest policymakers increase awareness and make it easier for workplaces to make accommodations for long haulers,” Tsao says. “Long COVID is one of those outcomes that’s going to require more study and research to understand. Our health systems, research centers, and the National Institutes of Health are establishing programs specifically to look at the ongoing impacts of COVID and long COVID. The reality is that we don’t know a lot about the cause and effect.”
Meanwhile, Michigan’s health systems continue to support patients the best they can until new research sheds light on how to better treat the growing ranks of COVID long haulers.
“If you are a long hauler, just keep the faith. Stay pushing,” Sharpe says. “Take it day by day. Try to improve in areas that you can and don’t worry about the areas you can’t.”
Estelle Slootmaker is a working writer focusing on journalism, book editing, communications, poetry, and children’s books. You can contact her at [email protected] or www.constellations.biz.
Henry Ford Health photos by Steve Koss. All other photos courtesy of the subjects.
