They call themselves long-haulers, and they number in the thousands across the country. Their symptoms include brain fog, shortness of breath, fatigue, muscle weakness, heart palpitations, and mood and sleep disturbances. Many have been unable to return to their normal daily activities.
One study found that 75 percent of hospitalized COVID patients still had symptoms six months after discharge. But long-term symptoms don't just affect those who were hospitalized; some long-haulers had only a mild initial infection, but continue to battle its effects months later.
Many are members of an online support group called Survivor Corps, where more than 155,000 adults share information, advice and encouragement.
In addition, specialized post-COVID clinics have opened across the country to collect data, study the condition and investigate ways to help long-haulers. It's a difficult task, because symptoms affect every system of the body, and also because cases can vary widely.
Here, four older adults share their experiences of being a COVID-19 long-hauler:
"The virus aged me 20 years.”
Christy Hutchison, 50, Woodland, Calif.
Christy Hutchison believes she picked up the coronavirus when she traveled for work in March, just as the first COVID-19 cases were popping up in the U.S.
Fortunately, her illness wasn't severe, and three weeks later Hutchison was back to feeling like herself. To celebrate, she resumed her daily walking, logging 5 to 9 miles a day during the month of April.
"I was like, ‘Look, I've gotten through it, and I'll have antibodies now. I'm going to get myself healthy again,” Hutchison recalls.
Then, in early May, new symptoms appeared: A deep, hacking cough. Swelling in her feet and lymph nodes. Vertigo so bad she had to sleep sitting upright. And complete exhaustion.
"It was like an energy reserve had just been pulled out of me,” she says. A constant tightness gripped her chest. Her heart rate skyrocketed at unexpected times. “I'd be lying on the sofa, just watching TV, and my pulse rate would shoot up to 160 beats per minute,” she says. “I'd be terrified, thinking I was going to have a heart attack.”
Hutchison saw many different doctors, who ordered a variety of tests. She was examined, scanned, questioned and medicated.
One night in November, she awoke drenched in sweat, pain stabbing between her shoulder blades. She thought it was heartburn, but she also felt nauseous and vomited. Recognizing those as classic signs of a heart attack, Hutchison drove herself to the ER. But her chest X-ray, EKG and other tests all turned up normal.
"What's really terrifying is that after all this testing they can't say, ‘This is the problem and how we are going to fix it,'” Hutchison says.
It's now been almost a year since she was first infected. Hutchison says some of her initial symptoms have disappeared, but new ones have emerged. Her legs sometimes twitch erratically, and she gets migraine-like headaches. It can be a struggle to concentrate and think of words.
Hutchison lost her full-time job in private aviation when the company she worked for dissolved in December, so on the days that she feels good, she is job-hunting, as well as doing some contract work and supporting her two teenage daughters as they do virtual school. Sometimes she even has enough energy for a walk around the block and some yardwork.
On the bad days, however, she can barely get out of bed. For Hutchinson, who is normally a high-energy person, it has been devastating. “I feel like I'm disabled,” she says. “I can never run more than 85 percent of normal. This virus has aged me 20 years in a year."
"A lot of these doctors don't believe me."
Bruce Tedeschi, 64, Grand Haven, Mich.
Before the pandemic, Bruce Tedeschi was a fairly active guy. A retired biotech quality director, he enjoyed working on classic cars, fishing and woodworking.
Then, in January 2020, he was hit hard by a variety of bizarre symptoms. His blood pressure skyrocketed and doctors couldn't get it down. He had ringing in his ears, shortness of breath, stomach pain, digestive issues and nerve pain. He went from doctor to doctor, and no one could figure out the problem.
Tedeschi doesn't know for sure if it was COVID-19. At the time, most Americans hadn't heard of it, and there was no testing.
When Tedeschi's symptoms didn't resolve after a few months, he moved to Michigan to be closer to his family. In June, his brother tested positive for coronavirus. Tedeschi also ran a fever at the time, and his doctor advised him to quarantine.
His brother recovered quickly, but Tedeschi continued to experience problems: an irregular heartbeat, circulation problems, digestive issues, migraines, fatigue and nerve attacks.
Some doctors told him they didn't think his health issues could be the result of COVID-19 because he never developed a cough or serious respiratory symptoms. They ordered CAT scans, MRIs, swallowing tests and other screenings. Most were normal.
"I've been to so many doctors the past 14 months it will make your head spin,” Tedeschi says. “A lot of these doctors don't believe me. They would say, ‘Let me give you antidepressants.'”
At the end of August, Tedeschi finally persuaded a physician to give him an antibody test. It was positive – so at least he finally had confirmation he'd been infected with the coronavirus.
Since then, he has continued to see doctors and try medications. He says he has good days and bad days, but on the bad days, the nerve pain in his hips, back and legs can be excruciating. Even just walking is arduous. “Going to the grocery store is like a three-hour workout at the gym for me,” he says. “I can't stand or sit for a prolonged period.”
In February, Tedeschi saw a new doctor who says he may have a name for Tedeschi's condition: multisystem inflammatory syndrome in adults (MIS-A), a rare but serious condition tied to COVID-19. Only recently identified by the U.S. Centers for Disease Control and Prevention (CDC), it targets multiple organs and causes increased inflammation in the body.
The doctor referred Tedeschi to an infectious disease specialist for a definitive diagnosis and treatment. Tedeschi doesn't want to get his hopes up yet, but he has to admit it's promising, especially since there's a treatment for the condition.
"It could be the answer,” he says. “At least it's a start.”
"What I miss most is just having energy.”
Loleta Barrion, 63, Las Vegas, Nevada
One morning in August 2020, Loleta Barrion woke up to a funky smell that was vaguely familiar. Was something rotting under her bed? Nope – the scent was in other rooms, too.
That's when Barrion remembered: This was the same phantom scent that had haunted her during a rough bout with COVID-19 earlier in the year.
For more than a month in April 2020, Barrion battled fever, fatigue, difficulty breathing and a bone-jarring cough. She had been determined to stay out of the hospital. To relieve her shortness of breath, she hooked herself up to the BiPAP (bilevel positive airway pressure) machine she used for sleep apnea, and ran it 24 hours a day.
Barrion, a second-grade teacher, eventually recovered except for some lingering fatigue. By August, she was looking forward to a new school year, even if it had to be partly online.
Then she woke up to that smell. And within a few days, her other COVID-19 symptoms “all came back full force,” she says: The hacking cough. Pounding headaches. And the same deep exhaustion that had knocked her out in April.
"I go to take out one bag of trash. By the time I get back in, I have to lay down for an hour,” she recalls.
The first doctors she contacted weren't sure what to make of it. Some thought she had an active case of coronavirus and refused to see her. Others doubted her symptoms were linked to COVID-19.
There is no clinic that specializes in treating long-haulers near her home, but Barrion says she has since found a good primary care doctor, as well as a neurologist and an endocrinologist who are running tests and helping to treat her symptoms with medication.
Meanwhile, she has continued to teach virtually, even though sometimes she feels like she can barely get through the day. She draws hope from COVID survivors in support groups who report their symptoms are improving. Her own symptoms haven't improved since August, although some days are better than others.
"I really believe that God has my back,” she says. “But there are days when I start to get depressed. I wonder, ‘Am I ever going to get better?'”
Just recently, Barrion filled out paperwork requesting to stay at home for the rest of the school year, even though she would like to go back in person when her students do.
"If I had to go into the classroom, I couldn't last,” she says. “What I miss most is just having energy — being able to stand up and cook, being able to clean my house, and being able to be in person with my students, to have the energy and ability to teach the way I know I can teach."
"It took my whole being and changed it."
Laura Gross, 72, Fort Lee, N.J.
Laura Gross was in agonizing pain. Her gall bladder needed to come out. That's the reason the hospital allowed her in for surgery on March 18, 2020, even though most of the operating rooms were shut down for COVID-19.
Gross doesn't know if she picked up the coronavirus in the hospital or if she got it from her wife, who came down with COVID-19 two weeks later.
Either way, the viral infection packed a wallop. Her surgery pain morphed right into COVID-19 pain. She had a fever, joint and muscle aches, swollen glands, and an overall weakness and dizziness she couldn't shake. The headache was the worst. “My right eye felt like I had an ice pick in it.”
Gross kept waiting for the illness to end and her symptoms to resolve. They never did.
Though her fever subdued, she continued to have weakness, joint pain, debilitating headaches and a lack of appetite. She lost 15 pounds over four months. Her blood pressure was so low that her doctor prescribed a teaspoon of salt every day. But it would spike at random times.
Then there was the brain fog. Gross describes it like this: “It's like I have folders and subfolders with information in my brain, and COVID took a bomb and blew it all up, and the information started flying all over my brain and moving constantly so that I can't access it,” she says. “I almost want to cry just talking about it."
Even simple tasks like checking her calendar to see when she was free and then translating that information into an email caused her confusion.
A semi-retired writer and marketing executive who has always prided herself on her sharp mind, Gross says the inability to think clearly was what was most depressing. “It took my whole being and changed it,” she says.
Gross is enrolled in a post-COVID clinic at Mount Sinai Hospital in New York City. She has several doctors in different disciplines from there as well as outside doctors working on her case. They told her they believe she will eventually recover, and she holds on to that.
In late January, Gross got her first dose of the Moderna COVID-19 vaccine. After two days of mild side effects, she woke up on day three and found that her brain fog had lifted and her energy was back. She is hoping it's the beginning of the end.
"I feel like my old self again,” she says. “I don't know if it'll last, but I'm praying.”
Michelle Crouch is a contributing writer who has covered health and personal finance for some of the nation’s top consumer publications. Her work has appeared in Reader’s Digest, Real Simple, Prevention, The Washington Post and The New York Times.