Chronic fatigue associated with long COVID forces many people to rest and disengage from activities they used to do — but limiting your life can feel powerless.
This story is from The Pulse, a weekly health and science podcast.
Editor’s note: We’re calling the main subject in this story “Susana” to protect her privacy.
When Susana was growing up, she was pretty much an only child. Her two siblings were much older than her, and she often found herself roaming the world on her own and fending for herself.
“I was a latchkey kid,” she said. “And I think that when you grow up in that kind of environment, you kind of just feel like… you don’t need anybody else’s help.”
Susana eventually grew into a self-sufficient individual. She often carried out activities independently and avoided the need to ask for help. And as her personality blossomed, she became much of an adventurer — constantly interested in challenging hikes and roller derby competitions.
She thought of herself as daring. “I like to prove people wrong. If somebody tells me I can’t do something, I will show them I can.”
But this all changed in 2021 when Susana got a mild case of COVID-19, which later led to long COVID.
“I was practically bedridden for the first few weeks,” she said. “It was hard for me to lift my arms up. Then it was hard for me to sit up, and it was hard for me to eat.
Susana was experiencing chronic fatigue that usually led to excruciating pain if she tried to fight it. Her persistent symptoms proved to be a significant inconvenience in her life.
By the third month of her symptoms, she saw a specialist at the
Post-COVID Assessment and Recovery Clinic at Penn Medicine in Philadelphia. The clinic was established in March 2021 to provide care for patients experiencing lingering side effects from a COVID-19 infection and to study the nature of long COVID.
“I expected an answer,” she said. “I expected to hear this is what’s happening to you, here’s how we treat it, and this is how long you can expect to get better. And that’s definitely not what happened.”
For Susana’s symptoms, the post-COVID clinic was unable to offer her a ‘cure-all’ treatment — but they did suggest ways to manage her fatigue. One was called pacing — as in pace yourself. It’s a
long COVID strategy where the patient is active when they’re able and resting when they’re tired — rather than pushing through their symptoms.
Pacing sounds simple enough, but the strategy forces patients to quit activities that many people take for granted — like chopping vegetables for dinner or pushing a heavy door open. It’s like making a list of things to do and crossing off half of the list based on the amount of energy you have.
Susana tried it out. She no longer walked her dog as much as she wanted to, and she stopped making long grocery lists so that she could actually carry the items back home. She also retired from one of her favorite and satisfying hobbies, assembling Ikea furniture.
But there were times when pacing fell short. When she was totally exhausted — she had to ask for help — which was a difficult task for her. The independence Susana had embodied for most of her life was slipping away while she was coping with the effects of long COVID.
“Having long COVID takes all of that away,” she said. “Not just like the physical, fitness aspect, but like really being in control of your body and being independent.”
As months passed, Susana began to feel better. Her fatigue had lessened, and she could resume most activities after almost a year. It’s unclear if pacing helped with her symptoms as research is still being conducted on the method and its effectiveness on long COVID.
But then, history repeated itself.
The doctor made a weird comment on that LC differs from ME in that LC people get better over time, and that pwME don't have cognitive impairment or breathing issues... which is weird, but he did at least mention they are similar and that people stay ill for a long time.
