Long COVID, as Defined by People with Long COVID

We analyzed over thirty definitions of Long COVID supplied by people with Long COVID and their caregivers, and a few patterns emerged. Definitions for Long COVID from people with Long COVID:

Acknowledge a change in the state of one’s health before and after an initial COVID-19 infection.

Definitions are broad enough to encompass symptoms that persist after an infection, as well as new symptoms and health impacts that emerge:

“Health complications arising from COVID that occur after the initial acute illness.”

—Alexandra, lawyer, daughter, and person with Long COVID

“Long COVID is a worse state of health following a COVID infection.”

—Maya, recent college graduate, business analyst, and person with Long COVID

Compare the state of one’s capabilities and quality of life before and after an acute COVID-19 infection.

Many people defined Long COVID as a shift in how they have to approach each day:

“[Long COVID] is a change in how I have to live my life. I can’t conform to the traditional nine-to-five in the same way anymore, because my body is prioritizing healing over everything else.”

—Tara, recent graduate, theater producer, and person with Long COVID

Some people use analogies to describe their experience:

“My kids [who have Long COVID] say, ‘I used to be a Lexus, and now I’m a broken Honda.’”

—Rebecca, therapist, mother to two children with Long COVID, and person with Long COVID

Definitions echo a change in identity that many people with Long COVID experience:

“The old Kyle was Kyle, the sales manager guy, the marathon guy. Now I’m Kyle, the guy who gets the mail and walks the dogs.”

—Kyle, hardware sales manager, father, and person with Long COVID

Emphasize a desire to define Long COVID broadly, so as to include a range of symptoms, related conditions, and lived experiences.

“In the stuff that [my advocacy group has] been putting out, we’ve been using the terminology ‘Long COVID and its associated conditions,’ because then we’re highlighting the dysautonomia and the ME/CFS and all of these other things that are prevalent in the Long COVID community.”

—Amanda, Long COVID advocate, mother, and person with Long COVID

People with Long COVID want a definition that reflects their own experiences, but not at the expense of others. This reflects a sense of solidarity that is strong within the Long COVID community:

“It’s important to stay broad, because [Long COVID] happens along a spectrum affecting us all slightly differently.”

—Ximena, graduate student, mother, and person with Long COVID