Long COVID patients struggle as medical community learns more about the condition
For Southeast Asians, the word durian might evoke a shiver: The pungent fruit’s smell has been compared to rotten eggs and decay.
But for Jeanne Sta Ana from Tennessee, who got COVID-19 in December 2020, durians are a reminder of how the infection has restructured her life.
“I can only really half smell that now — like, it doesn’t really bother me anymore,” she said. “Whereas when I used to smell it, it made me want to gag.”
Reduced sense of smell is one of many changes COVID-19 introduced to Sta Ana; she also now navigates physical and mental fatigue and shortness of breath, some of the most common symptoms of long COVID-19. The condition, defined by the U.S. Centers for Disease Control as persistent symptoms of the virus four weeks after the initial infection, may impact 1 in 5 adults infected with COVID-19 according to a CDC study and can manifest as some of over 200 symptoms.
Other studies put that number higher, finding 1 in 4 adults infected by the virus still dealt with symptoms that lasted for months.
Doctors say the illness also creates a challenge that could reverberate for years throughout healthcare systems — a broad group of people seeking medical care for a condition for which little is known, all at the same time.
“The more I do, the more questions I have,” said Dr. Monica Verduzco-Gutierrez, who is part of the Post-COVID Recovery clinic at the University of Texas-San Antonio. “I really need people at the frontline to understand the disease as much as we can, which is changing every day, with research coming out every day, and figure out what to do for patients … We know this is a long-term public health issue.”
Even if patients don’t develop long COVID from their first infection, a new Science study found subsequent COVID-19 omicron variant reinfections — especially with new variants consistently developing — do not result in boosted immunity. And studies show the brain damage from a COVID-19 infection is comparable to that visible in early-stage Alzheimer’s and Parkinson’s patients.
Writer Christina Xiong, who lives with long COVID-19, is among those grappling with broader questions about how the condition will impact society, especially with mask mandates absent throughout most of the country despite yet another surge.
“What is going to happen to society as a whole if a lot of people become disabled in this way?” she said. “What is going to happen to our health long-term if we just continue to get reinfected?”
As more and more becomes known about the condition, patients hope to share their experiences in efforts to broaden understanding about what long COVID might look like from person-to-person and the struggles they’ve faced in being taken seriously. For many, ways to cope include finding community and restructuring the ways they work, but questions remain about how long COVID continues to deepen and underscore systemic inequities in healthcare and whether political bodies will respond to the crisis.
'COVID likes to take what people love most': The personal costs of long COVID-19
Xiong is from North Carolina, and was a professional copywriter before being infected with the virus. She said she had her “dream life” set up before long COVID symptoms upended it.
“COVID likes to take what people love the most,” she said.
While she wasn’t able to confirm via testing, Xiong experienced COVID-19 symptoms in December 2019 that saddled her with recurring pneumonia and ADHD-like symptoms, along with heart palpitations, reduced sense of smell and taste and suddenly developed psychoses.
“I just could not plan or write or function,” she said. “I’ve written some poems and short stories, I guess, over the past couple years, but nothing for quite a while.”
While she said she might have had undiagnosed illnesses, she said her symptoms were beyond anything she’d ever experienced.
“I had an MRI of my brain … when I looked at the atrophy report of my brain, it shows atrophies in the frontal lobe,” she said. “It definitely affected me because my personality was affected — for this 14-month period, I had lost impulse control because I had no frontal lobe action going on.”
Then, she had COVID-19 in April, which she said re-inflamed her brain because she had already been in such an elevated state.
Unlike Xiong, Sta Ana, who works as a recruiter, already had an ADHD diagnosis prior to getting COVID-19, having taken medication for it since she was young. Initially, she attributed the increased struggle she was having with memory retention and attention span to worsening ADHD.
“I was having these interviews and I would be asking people questions, and halfway through, I would have to ask them, ‘Hey, could you repeat that?’ because I couldn't follow the conversation,” she said. “It got pretty bad to where I literally would have to go back on in and watch all my interviews and make sure we talked about whatever [we needed to].”
She had to modify her schedule and take time off work. And while Sta Ana said she was never a “super workout girl” prior to being infected with COVID-19, long COVID has made it so she can no longer work out.
“I used to be able to run a mile,” she said. “I can’t do that anymore — I get extremely fatigued. And after I worked out … I’ll pretty much be coughing and sighing, like the sound cats make when they have hairballs.”
Long COVID, like other chronic illnesses, creates greater financial burden
Like Sta Ana, Kevin Sunga, director of the Equity in COVID and Health Outcomes team at the Stockton nonprofit Little Manila Rising, was also infected with COVID-19 in December 2020. The ECHO team focuses on COVID-19 education around vaccinations and testing, along with providing community support for different aspects of health affected by the virus.
When listening to people with long COVID-19 share their experiences in a Little Manila Rising focus group, he heard them say hospitals were “swamped” and lacked capacity to match what was needed for folks dealing with the chronic illness.
The majority of Stockton’s population is Latino, with 45.6% of the city speaking a language other than English at home. In 2020, the city’s median household income was just under $54,000. In California for the same year, median household income was over $78,000.
“A huge part of it was … the financial burden that it puts on some people in our community, especially marginalized communities who may not necessarily have insurance or have access to insurance, [to respond to] the upkeep of long COVID-19,” Sunga explained. “People may be experiencing several symptoms and have to have multiple [doctor’s] visits.”
Xiong echoed that struggle: “I have insurance now … I didn't always have insurance, when I was a young person … but even now, I'm fundraising, because I have out-of-pocket expenses out the wazoo.”
Difficulty receiving care and support
While a recent study — the first large-scale one examining omicron — shows those who are infected with an omicron variant are less likely to develop long COVID, scientists say they’re still worried about the amount of people who may acquire the condition because of how much more infectious omicron has been than delta.
“We're saying, you know: 'You can take off your masks in airplanes. You don't need to be vaccinated anymore to enter a restaurant,’ Dr. David Putrino, who treats long COVID at Mount Sinai in New York City, told NPR. “All of these policy decisions are going to increase the likelihood that people get infected with COVID, while there's still a 5% chance of severe chronic illness. That's short-sighted and going to create a lot of long-term disability that did not need to exist."
Because much is still being learned about long COVID, healthcare providers like Dr. Hakeem Adenyi, the medical director at Sacramento Native American Health Center, say there hasn’t yet been a “magic bullet” cure for the condition.
“It’s just a matter of continuing to support people through the process and recognizing that people are going to go through it at different points,” he said.
But patients struggle with healthcare providers not always having that easy answer for symptoms and treatment. It’s a concern raised by attendees of the Little Manila Rising long COVID focus group.
“[They were saying] there wasn’t enough communication with their healthcare systems or healthcare providers, partly due to the fact that even they don’t know what to look out for when it comes to long COVID,” said JanCarlo Schabauer, an ECHO team member who helped facilitate the group.
Xiong said the lack of knowledge around long COVID was one in a long line of factors complicating her experience developing a care plan for managing the illness. Because the condition has so many ways of manifesting and COVID-19 has been shown to unmask prior existing conditions, she said it was hard for doctors to take her seriously.
“They’d say, ‘Oh, you're just a histrionic woman with mental health problems, and you're fat. That's your problem,’” Xiong said. “I was having hallucinations out of the corner of my eye … imagining there was rot everywhere. I was probably experiencing COVID psychosis and it just took 14 months for me to realize because the doctors just pretty much gaslighted me and treated me like it was all anxiety.”
Because of the invalidation she’s received during the process of seeking care, Xiong underscored the importance of finding someone — a family member or friend — who can serve as a patient advocate.
“Don't be afraid to ask for help,” she said. “That is my number one piece of advice … I understand people have pride and people are trained not to ask for help. A lot of people, if they're becoming sick like this for the first time, or they've never experienced anything like it, they might think it's a very humiliating experience, but it can also be humbling. It doesn't have to be.”
Finding ways to cope and build community
To deal with breaks in concentration, Sta Ana says she’s started recording her interviews so she can listen back if she’s had a lapse in comprehension when listening, and has started carrying a journal with her everywhere.
“Even when I’m talking to people, I’ll be writing stuff down bullet-pointed so I don’t get lost in the conversation,” she says.
To restimulate her brain, she uses the Elevate app, which has brain challenges, and does mindful meditation via Meditation Mountain, a podcast, and Headspace, a phone app.
Sunga says Little Manila Rising’s ECHO team is currently discussing the possibility of another long COVID focus group for community members to share their experiences and what’s worked for them.
The focus for that, Sunga’s coworker Schabauer added, is making resources about long COVID accessible, especially since Stockton is home to many multigenerational, low-income families of color who may not be able to find a space where resources are compiled.
“It’s a lot of fear in families, especially multi-generational families, when you have grandparents, and you also have kids, [living in the same house] and you don't want them to get the virus, of course, and comorbidities are present in these household like diabetes, cardiovascular diseases, and so it's always a toss up of what people are going to get,” Sunga said.
To Xiong, long COVID support groups on Facebook, the Twitter community under #LongCOVID and the community under #DisabilityTwitter have all provided an initial source of validation when she was seeking an explanation for continued symptoms post-COVID, reminders to give herself grace during recovery and suggestions for ways to manage symptoms.
“It’s hard on kids, too,” she said. “My daughter was like, ‘I wish I had my original mom.’”
But someone with a traumatic brain injury responded to a tweet Xiong made, advising her to hold onto herself, “grab onto yourself and hold on, fight like hell.”
“In the process of having this viral tweet, I kind of became connected with people in the disability community on Twitter and helped me accept myself as disabled,” Xiong said. “That’s allowed me to embrace just being with my daughter or going outside and watching the birds … If I nurture this slow pace, then I’m more likely to experience healing than if I go out and just have this narrative of ‘Oh no, I’m a shell of my former self.’”
Because there are so many symptoms of long COVID, it’s also worth consulting healthcare professionals if possible to figure out a treatment plan that works best for you. This CapRadio article offers resources for understanding long COVID and insight from multiple physicians on what they’d like others to know about the condition.