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.
The CDC has recommended that moderately or severely immunocompromised people receive a fourth shot of the COVID vaccine in 2022. But the sheer rapidity of the spread of Omicron has posed a very real immediate threat for people with immunosuppressive conditions because they can get sick more easily and are more likely to develop severe illness. A healthy immune response to the vaccine is needed to create protective antibodies, and therefore vaccines are less likely to be effective in people who are immunocompromised.
People who live with a disability, chronic illness, or other immunosuppressive conditions have shared their message on social media that managing their risk shouldn’t only be up to them, using the #MyDisabledLifeIsWorthy hashtag started by disability activist Imani Barbarin.
They have also adopted extreme protective measures to prevent COVID exposure, such as canceling or missing medical appointments, quitting jobs, or staying at home in self-imposed lockdown.
“There’s no such thing as too cautious at this point if we want to protect chronically ill or disabled people,” Hill said.
When she moved to Waterbury, Connecticut, in 2020, Hill struggled to find a pain management medical team that worked with Medicaid. But then she finally got a job with private insurance, found a new doctor, got an MRI, and was suggested a pain treatment plan involving occasional injections.
“I was thrilled,” Hill said. “I was really looking forward to it.”
But as the number of COVID cases rose in Waterbury, Hill decided to cancel the Jan. 19 appointment — she couldn’t risk exposure in the small waiting room that on previous visits had been very crowded.
After she canceled, Hill broke down in tears knowing that she’d have to continue living in pain despite overcoming so many other barriers to getting the healthcare she needs.
Hill said she has “a lot of anger” toward the government because it has few plans of action other than widespread vaccination to combat COVID. While getting a shot is effective for people who don't have a disability, she said, it’s not possible for people like her to ever feel totally sure their body responded effectively to the vaccine. The government needs to back up vaccination with other elements, such as mask mandates and limited capacity in public spaces, she said, or else people with weakened immunity must continue living in fear of potentially severe infection.
“With so few other mitigation strategies in place, community spread is beyond what we’ve seen before, again leaving immunocompromised people in a particularly vulnerable situation,” Hill said.
Last week, CDC Director Rochelle Walensky said in an interview with Good Morning America that it was reassuring news that most of the people dying of Omicron were those with multiple comorbidities, or preexisting conditions.
“Over 75% of deaths occurred in people with at least four comorbidities, so really these are people who are unwell to begin with,” Walensky said. “Really encouraging news in the context of Omicron.”
But what sounds encouraging to a nondisabled person navigating the pandemic can actually mean an increased danger for people like Hill if it leads to the general public acting more recklessly.
And exercising caution has put immunocompromised people in the balance of deciding which elements of healthcare they’re willing to put off to avoid a higher risk of exposure to COVID.
“If I were to skip an infusion, my disease would become active and I’d end up hospitalized,” said Tessa Miller, a Brooklyn-based health journalist and author who is chronically ill. Miller lives with Crohn’s disease, a chronic inflammatory bowel disease where the immune system attacks the digestive tract. She also has celiac disease, an immune response to gluten that can also damage the small intestine.
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.”
Nondisabled people may find solace in sharing the idea that everyone will contract Omicron at some point so it can’t be that bad. But to Rumor Noelle, this is like saying to immunocompromised people that they should be getting ready for severe illness or death.
Noelle, a 26-year-old full-time student in Hampton, New Hampshire, said it’s “extremely inaccessible” to even get a COVID test if you don't have a disability. Since they are living with cerebral palsy, someone has to drive them to get a PCR test, and home tests are extremely expensive given how much they’re already paying for medication and medical bills.
Noelle sees about seven doctors a month, but when they saw reports that some medical professionals were testing positive, they canceled appointments for January with a pain specialist and a surgery consultation to address pain in their legs and arms. Now they’ll have to buy extra pain relievers and ice packs until they can get another appointment.
“As that gets worse, I still have to worry about what happens if I get COVID,” Noelle said, adding that it’s frustrating that people with disabilities even have to use a hashtag as a reminder they deserve to live.
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.”