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Opportunity Area 1:

General Public Awareness

Insight

People with Long COVID and their caregivers feel marginalized, misunderstood, and isolated by a general public that is impatient for a return to business as usual.

The perceived lack of official, urgent action from public health officials on Long COVID frustrates people with Long COVID, who recognize the long-term risk of contracting COVID-19 and do not see enough being done to protect the public. Additionally, the dearth of communication can make people more susceptible to misinformation about Long COVID.
Many people with Long COVID avoid public spaces and events due to a fear of reinfection and the potential worsening of their Long COVID symptoms and health impacts. Some may experience PTSD symptoms as a result of trauma they incurred during their acute infection. The lifting of mask mandates and indifferent attitude towards masking and social distancing typical in many public and private places further isolates people with Long COVID.
Some people with Long COVID experience hostile interactions and aggressive comments from others in public because of ableism, xenophobia, racism, ageism, the politicization of COVID-19, and a stigma toward people with some chronic illnesses.
Many encounter situations in which family, friends, and people from the general public write off their symptoms as the byproducts of anxiety and depression, or even worse, laziness and an excuse not to work.

Illustration of a person with dark curly hair wearing a blue face mask and a light pink shirt.

“There are times I want to go out and be in public, but I’m also very skeptical and very frightened about being around lots of people while COVID is still such a rampant virus. People don’t realize that people are still getting very sick and contracting Long COVID.”

—Imani, interior designer, sister, and person with Long COVID

“[My son] is terrified of getting COVID himself. He prefers to homeschool for that reason. He has worn a mask even while playing soccer for a full 90 minutes for the last two years. And there have been adults at the games who make fun of him to his face for wearing a mask while he plays. It’s hard on him because he’s doing the right thing. He’s protecting himself and protecting me from re-infection again. He’s getting made fun of for trying to protect his mom.”

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

“I get a lot of the ‘you’re too young to be disabled’ comments. Like, random people [on the bus] will say, ‘you need to give up your seat.’ And I’m like, ‘I have a cane. One of my legs doesn’t work properly.’ I usually just try to avoid confrontation because of the sheer amount of violence that the pandemic is propagating.”

—Shannon, student, medical research intern, and person with Long COVID

“[Long COVID] is not a very tangible thing for a lot of people. They don’t see it happening to them or somebody they know, or they don’t realize that what they’re experiencing is Long COVID. I have had conversations with people who are like, ‘Oh, I had COVID, and I’m totally fine, but you know what’s weird? I can never feel the tips of my fingers now.’”

—Andrea, Long COVID advocate