What Life Is Like With Long COVID: Insights From 3 People Managing Lingering Fatigue
Key takeaways:
Long COVID-19 affects millions of Americans, causing symptoms such as fatigue, brain fog, and trouble sleeping.
Symptoms vary from person to person, but some people’s long COVID symptoms are severe enough to make completing daily tasks difficult.
Three people explain how they’ve managed their long COVID symptoms.
In May 2023, the World Health Organization declared the pandemic phase of COVID-19 over. But for millions of Americans living with lingering symptoms, COVID is far from gone.
According to a CDC report from 2022, nearly 1 in 5 U.S. adults who had been infected with COVID were still experiencing symptoms. Research in 2023 suggested that 16 million to 34 million Americans were still living with post-COVID health problems, a condition often called long COVID.
Long COVID symptoms include headaches, cognitive problems or brain fog, extreme tiredness, trouble sleeping, and gastrointestinal issues. For some, these issues are mild. For others, the symptoms are so severe that they can barely function day to day.
Doctors and scientists are studying long COVID and how to treat it. But, in the meantime, people who develop the condition are finding ways to cope. Here are three personal accounts of what it feels like to live with long COVID.
A scientist facing long COVID
In March 2022, David Heeger, then a 60-year old professor of psychology and neural science at New York University, went helicopter skiing in Alaska. By that June, he couldn’t walk around the block.
David first had COVID early in the pandemic and experienced only minor symptoms. But when he and wife caught the virus again in June 2022, his symptoms became worse over time.
“I was incapable of doing anything,” he says. “I couldn’t read. There were times when I couldn’t even sit up and watch TV. I was just lying in bed staring at the ceiling.”
What is long COVID-19, exactly? With long COVID, people continue to experience symptoms or new health issues after recovering from an initial COVID infection.
What’s a COVID “long hauler”? Read about the person who coined the term after having long COVID herself.
Can you get medical bills from COVID forgiven? Find out how this teacher got some of her medical debt erased.
David’s heart would race unpredictably, he had trouble sleeping, and his fatigue forced him to stop running his research lab. Although David had excellent insurance, his primary care doctor couldn’t see him for a month. Frustrated, he paid $4,000 out of pocket for an appointment at a private clinic, where he says he received a “level of attention and respect” that everyone with long COVID deserves — not just the people who can afford private care.
Doctors at the clinic discovered microclots in David’s blood vessels, which were lowering his oxygen levels and causing many of his symptoms. He tried a very low dose of a medication called naltrexone, which is usually used for treating addiction, which helped him early on. He also saw some improvement with supplements and vitamins. Now, he monitors his heart rate and blood pressure at home with a blood pressure cuff.
David recently wrote a blog post outlining all the steps he’s taken to improve his symptoms. He hopes that and the following pieces of advice will help others with managing long COVID:
Find a knowledgeable doctor. That means “finding the right physician who’s going to be open-minded about this and willing to try some stuff with you,” David says. “The average primary care physician isn’t on top of this. They’re not getting the right information. You need to find the one doctor in your area who gets it and who has been treating people.”
Pace yourself. “Give yourself as much rest and space and recovery as possible,” David says.
Today, David works remotely and avoids crowded indoor spaces. He says he’s 80% of the way back to his pre-COVID health but knows others haven’t been as fortunate.
“I know people who have been sick for 3 years and are either bedridden or need a walker or a wheelchair to go outside. So I feel very fortunate,” he says. “I also feel very fortunate that my employer has made it easy for me to work remotely effectively and that there hasn’t been a financial burden, because I’ve met people along the way here who are just devastated and destitute.”
A healthy lifestyle interrupted
Matthew Johnson, a 35-year-old user experience researcher, returned from a trip to Niagara Falls in 2022 feeling mildly sick. His symptoms faded within a week, but then unexpected health issues appeared.
“These new symptoms kind of hit me like a tidal wave,” Matthew says.
Matthew developed extreme fatigue and a constant sensation of mucus in his throat. He had a hard time getting out of bed and found it impossible to work full days. Since he didn’t have a primary care doctor, he went to urgent care but was left without answers. Then, he saw specialists who ordered tests, but the results didn’t point to a clear diagnosis.
“It just felt like a wild goose chase to me and a lot of money,” Matthew says. “My insurance wouldn’t necessarily cover all that.”
Eventually, Matthew saw a pulmonologist who gave him an inhaler, but that also didn’t help. Unable to access long COVID clinics, he turned to online communities for people with chronic fatigue syndrome, where he learned helpful strategies.“Pacing yourself is important,” he says.
By focusing on rest, following the Mediterranean diet, and working freelance to manage his schedule, Matthew started to see improvements. He continues to struggle with the constant feeling of having mucus in his throat and is still seeing doctors to find a solution. But his symptoms have slowly started to get better.
“There were days where I had to lie down for most of the day, but I haven't had that many days like that lately, which is really good,” he reports.
Matthew offers these suggestions to help others navigate life with long COVID:
Connect with others. “Try to find a community of support because there’s a real psychosocial element to these kinds of illnesses,” Matthew says.
Give yourself grace. “You have to surround yourself with a few people who can listen and understand and give you some grace if you lose your head a little bit or if you’re depressed or if you’re not getting things done the way you used to,” Matthew says.
A pediatric nurse advocates for herself
Danielle Gillan was working as a pediatric oncology nurse in central Florida in 2020 when she came down with COVID.
“It was horrendous,” Danielle says. “My entire nervous system got destroyed. I struggled to talk, walk, see. I couldn’t feel my hands or my feet.”
While Danielle’s symptoms were severe, they didn’t include shortness of breath. So when she went to the hospital, they just sent her home to recover. But she didn’t feel better for years.
“I literally laid in bed for about a year,” she says. “My kids had to spend most of their quality time with me in bed.”
Like David, Danielle’s heart would race for no clear reason. She had difficulty sleeping. And like many others with long COVID, she had a hard time getting answers from medical professionals.
“My original appointment with my primary care [physician] got delayed about 2 months. Then they referred me to a cardiologist, pulmonologist, and an infectious disease doctor. Those people were even harder to get a hold of,” she remembers.
When Danielle finally got an appointment with the cardiologist, she had to fight with her insurance to get coverage for a cardiac MRI. But the MRI — and test after test — came back fine.
In general, Danielle struggled to feel heard by her doctors when she did get in to see them.
“With the medical background I had, I would always have to fight for kids and make sure that they got access to treatment and care. So I already had that experience of advocating for myself. I could trust my own symptoms. I could report them appropriately,” she says, adding that those skills helped her fight for herself, but they are advantages not everyone has.
Getting an appointment with a doctor at the Mayo Clinic in Jacksonville, Florida, who specialized in long COVID was a breakthrough for Danielle. She enrolled in the facility’s rehab clinic and began to improve. “I got hyperbaric oxygen therapy treatment, which allowed me to heal,” she says.
Lifestyle changes were a big part of her recovery, too. She bought a WHOOP device, which athletes use to monitor their fitness levels, and used it to monitor her metabolism and make sure she wasn’t pushing herself too hard. Very gradually, she started to add tiny amounts of exercise back into her life, recording how the increased activity affected her condition in a journal. And she started avoiding sugar, processed foods, and alcohol.
Danielle has a podcast where she explains what worked for her to help others with long COVID. Here are her key strategies for managing the condition:
Track your activity. Danielle says that fitness devices and journals helped her understand how her body responds to different levels of effort.
Start slowly. Danielle recommends gradually reintroduced exercise into your routine.
Focus on nutrition. For Danielle, following a strict dietary plan supported her recovery.
Advocate for yourself. Danielle reminds people that they may need to clearly explain their symptoms and push for the care they need to see improvements.
While it has been a long road, Danielle is now on her way to recovery.
“You know what I did this week?” she says. “I rode my bike 6 miles. I walked 4 miles. [I] went to Pilates, attended a seminar, made dinner, did laundry, and woke up the next day and I was good.”
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