When Christine Ruder became sick with the coronavirus last fall, the Rolla elementary school teacher experienced a “bingo card of coronavirus symptoms.” She had fever, hives and stomach problems.
After a while those symptoms went away, but they were replaced with new ones, like difficulty finding words.
“I couldn’t think of common everyday objects,” she said. “I need to get that stuff out of the fridge. What do you call that stuff? It’s white? Oh, milk!”
Ruder is one of the many people who doctors say have “long COVID,” a group of symptoms that persists for weeks or months after a person has recovered from the initial infection.
Long COVID symptoms vary from patient to patient, but many describe feeling exhausted all the time — so much that daily jobs or errands become impossible to manage. Others report having fluttering heartbeats, rashes and what many call “brain fog.”
Some patients report symptoms including COVID tongue, in which the tongue is covered in bumps, and COVID toes, in which a patient’s toes become blue and appear frostbitten.
Ruder still has trouble finding words sometimes. On other days, she falls asleep sitting up watching television. Only recently could she stand up without using a piece of furniture to pull herself up. Sometimes, her heart starts beating wildly.
“There’s days where I can feel it, just pounding oddly in my chest,” she said. “And that’s exhausting.”
An uncharged battery
“A lot of patients, not even a fraction, but a lot of patients, don’t really recover fully after having COVID,” said Dr. Ziyad Al-Ali, chief of research and development at the St Louis Department of Veterans Affairs.
Long COVID is so new that doctors don’t know how exactly to define it or how long it lasts. Doctors generally agree that it’s symptoms that persist in patients for many weeks after they're infected with the coronavirus.
Doctors don’t know for sure why some people stay sick, but it might have to do with how the body protects itself against the initial infection.
“It mounts an immune response that is so strong that it also leaves its effects or scars on the body itself for weeks to come or months to come or even years to come,” he said.
Approximately 1 in 10 people who get the disease will experience long COVID, Al-Aly said.
“There are millions and millions of people who got COVID,” he said. “If only 10% of them, as estimated by the World Health Organization, have long COVID, then that’s a huge, huge number to deal with from a public health perspective.”
That can be disheartening for people like Chelsea Merta, a St. Louis attorney who contracted COVID-19 in December and still has symptoms. Most days end in the middle of the afternoon when she runs out of energy, she said.
“It's like you wake up, and there's nothing there,” Merta said. “You know how you charge your cellphone battery overnight? It's like, you didn't charge, you didn't plug the charger. And so your battery didn't get filled.”
Merta used to be an athletic person who would walk laps around Tower Grove Park with her partner. But now, she doesn’t know what her future looks like:
“I don’t know what that's going to be long term, or if I'm ever going to be able to get back to where I was, health wise,” she said.
'A gray space'
St. Louis Alderwoman Megan Ellyia Green, a Democrat who represents the 15th Ward, calls living with long COVID a “gray space” full of uncertainty.
Green got sick with the virus about four months ago and still feels wiped out all the time. Earlier this month during the city’s primary election, she spent only 15 minutes at the polls instead of campaigning for hours as she normally would.
“Going to the grocery store can take it out of me for the rest of the day,” Green said. “So I knew that standing out at the polls for an entire day just was not going to be an option for me.”
For many people, long COVID is hard to talk about because there’s a stigma around people who catch the disease, she said.
“[It’s like], ‘What did you do wrong to get this?’ And there's a lot of shame associated with it,” she said. ”We need to be able to openly talk about having it and what we're experiencing, because we also don't want people sitting at home suffering alone.”
Noah Rosenberg has dealt with fatigue since contracting the coronavirus last year. He agrees that many people see catching the coronavirus as a moral failing.
“If you got it, I think in people's mind, it meant it revealed that they cheated,” said Rosenberg, of St. Louis. He compared it to STDs or other diseases that carry a social stigma. “We hear about it every day. But not so many people want to talk about their symptoms or how they got it.”
It’s also difficult to get treatment for a disease about which little is known, during a time when health care workers are overwhelmed treating patients with acute COVID-19.
Rosenberg understands why treatment is hard to come by, but he’s still frustrated.
“The medical systems are so completely overwhelmed that there's no doctor that would triage a long haul in front of somebody who's got a really tough case of COVID,” he said.
Gradually improving
While their symptoms persist for months, many patients do report gradually feeling better.
Kabrina Forrest, a licensed professional counselor who lives in Ferguson, caught the coronavirus at the beginning of the pandemic. She’s still recovering.
Her symptoms became so bad over the summer that she had to quit her job.
“Being a therapist, it requires a lot of engagement and communicating,” she said. Being short of breath and having difficulty even staying awake doing daily tasks, it was very difficult to kind of show up and be present.”
Forrest even spent a week in the hospital last spring.
“My heart was pumping so hard trying to help pump fluid through my heart and lungs, and that was what was causing the extreme fatigue,” she said. “And the difficulty with breathing is because my heart was being overworked.”
She’s still on oxygen, but after months of rehab at SSM Health DePaul Hospital, her health is improving. Forrest encourages anyone with long COVID to be open and ask for help.
“With adjustments and with patience and with time, you can get a lot closer to a different and a new normal,” she said.
Forrest says she’s looking for a new job that will still allow her to take care of herself. Like others with long COVID, she just wants life to return to normal.
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