A man is tested for COVID-19 at a free testing site in Washington, DC, Jan. 10.
Kayle Hill hasn’t left her apartment since Dec. 27. A 25-year-old disabled person, she’s taking isolation more seriously than ever before to avoid exposure to the contagious Omicron variant of COVID. She’s stopped her practice of making short visits to local spots, only goes outside to occasionally pick up curbside deliveries, and will miss a medical appointment to address pain this month.
While nondisabled people may be calmed by the idea that Omicron is a less severe version of COVID, the threat of a highly transmissible version of a deadly infection is as scary as ever for people with weakened immune systems. And recent comments by top COVID leadership that flippantly passed over the very real threat COVID still poses to immunocompromised people were met with frustration from people like Hill.
“It terrifies me to my core,” Hill said of this phase of the pandemic. “As immunocompromised people can never be sure that their body responded sufficiently to the vaccine, many of us — while so incredibly thankful for the vaccine and the layer of protection it provides — have to live as though we are in a pre-vaccine world.”
Hill lives with Ehlers-Danlos syndrome and degenerative disc disease in her back, as well as rheumatoid arthritis, for which she takes an immunosuppressant. She told BuzzFeed News it’s “absurd” that Omicron has been hailed as a “milder” version of the virus while she considers this time to be the most dangerous phase of the pandemic yet for the roughly 7 million immunocompromised people in the US.
“There’s no such thing as too cautious at this point if we want to protect chronically ill or disabled people,” Kayle Hill said.
Miller receives immunosuppressant infusions every six weeks at a chemotherapy center, and even though COVID is a risk, she said she can’t skip the appointments because they keep her chronic illness in check. Miller decided to put off other medical treatments, though, including seeing a neurologist to treat migraines caused by the infusion treatment until COVID cases go down.
“Being hospitalized right now is my worst nightmare, not just because of the risk of COVID, but because the system is entirely overwhelmed and I don’t want to add to that,” she said.
People with disabilities or chronic illnesses are “tired” from the pandemic, Miller said, adding that the CDC’s COVID messaging — though it hasn’t surprised her — treats disabled people as “disposable.”
“If the pandemic has revealed anything, it’s that the economy comes before all else and that we should be willing to die for it,” Miller said. “It’s not only saying ‘We didn’t consider chronically ill and disabled people when we created these guidelines,’ but ‘We also don’t care if you die.’”
Miller hasn’t socialized since February 2020. She didn’t experience a return to public transit rides or long-awaited vacations as nondisabled people have postvaccination. She said her world just feels “smaller and lonelier.”
If chronically ill and disabled people had been sought for guidance from the start of the pandemic, she said there would have been more stringent measures to limit the virus’s spread. She said officials would have done things like pay people to stay home or get vaccinated, make remote work a standard, provide universal childcare, and study the long-term effects of COVID to anticipate a new group of people with disabilities.
“We don’t know how else to say that our lives are worth living and that we’re worth listening to,” Miller said. “Had chronically ill and disabled people been looked to for guidance and leadership from the start of the pandemic, I can guarantee we’d be in a lot better shape than we are now.”
The only time Noelle leaves home is to go to their job as a receptionist — a job they started in December after giving up a previous position at a crowded restaurant due to the higher risk of COVID exposure. Now they’re considering quitting again because coworkers have come to the office with COVID symptoms. But leaving a job is scary, Noelle said, because it’s difficult to find an employer that will accommodate frequent medical appointments.
“Disabled people have been right about everything in this pandemic,” Noelle said. “Everyone's a little desensitized and too OK with disabled people’s deaths. … It’s like we’re sacrificing disabled people to make room for the new disabled people who are here because of long COVID and COVID in general.”
Peter Morley, 52, has lived with chronic pain and illnesses for 15 years, including lupus, and is a kidney cancer survivor. The New York–based patient advocate has left home as little as possible during the pandemic and has missed or rescheduled myriad medical appointments because he said he feels “too vulnerable” to COVID in a hospital setting.
“I have reprioritized my health issues and appointments, something I would never do pre-COVID-19,” Morley said.
He’s overdue for an endoscopy for liver disease, which can only be done by a hepatologist at a hospital. But like Hill, Morley said he feared narrow corridors and other closed spaces in the hospital with people who could potentially be unvaccinated, aren’t masked, or aren’t social distancing.
When he gets stressed about taking care of his body, “my diseases act accordingly,” Morley said. If his mental health triggers some of his conditions, it could lead to hospitalization, so he’s working with a therapist remotely, something he said not everyone in his position can access.
“And it’s not just us that it terrifies — our caregivers are just as alarmed,” Morley said. “We are children, parents, grandparents, mothers, fathers, sisters, brothers, and we are your neighbors. We are not statistics.”