It is 2022. We are in the third year of the Covid-19 pandemic. And I’m not feeling “encouraged” by the information we now have about this virus. Instead, I feel terrified.
I am chronically ill and disabled, a mishmash of different diseases that render me “medically complex.” The one condition I’ve been concerned about in relation to COVID-19, though, is the rheumatoid arthritis for which I take immunosuppressants.
I’ve been on immunosuppressants since I was 15 months old, with only a few breaks here and there to let my body breathe. Every flu season has meant waiting for the worst to happen; another cold turning into a 104-degree fever, or another round of strep throat turning into an abscessed tonsil — or worse, scarlet fever. These experiences are ingrained in my mind whenever I think about my immune system and how it might react to a virus like COVID-19.
In a recent interview on “Good Morning America” about the surge in cases being caused by the Omicron variant, Rochelle Walensky, Director of the Centers for Disease Control and Prevention (CDC), tried to put a positive spin on things. It’s “encouraging,” Walensky said, that a recent CDC study found that more than 75% of vaccinated patients who die from COVID-19 have “four or more” preexisting conditions. “These are people who were unwell to begin with,” she said. These are people like me.
The full clip shows that Walensky was commenting on the results of that one recent study of vaccinated people, rather than talking about COVID-19 deaths more generally. And Walensky herself has said that protecting the health of people with comorbidities is essential. But for people with chronic illness and disabilities — especially those of us who aren’t sure our bodies developed sufficient antibodies from the vaccine — this clarification doesn’t provide any consolation. If anything, it feels like an attempt to appease the disability community, with no tangible indication from CDC policies that they are prioritizing the lives of immunocompromised people.
In January 2020, I had to quit my job in New York for myriad reasons, specifically health insurance and my health. I was on immunosuppressants while working at a day care, which did not go well together. I decided to stop taking my medication (don’t do this without talking to your doctor!) because I was needing to put it on pause so frequently due to upper respiratory infections. Without this particular medication, I am still vulnerable to complications, such as severe dehydration, when I do get sick. That said, the frequency and severity of upper respiratory infections drop drastically when I stop my immunosuppressant medication.
By March 2020, I was living in Westchester, New York, which was at one time the epicenter of the pandemic, before it migrated and blew through New York City. I was six months into a new relationship with someone living in Connecticut, commuting back and forth throughout the week. Knowing my medical history, my boyfriend suggested I stay in Connecticut for a week or two “until this passes.” At the time, I had no clue how exceptionally terrible this pandemic would be.
In summer 2020, as the first wave of COVID-19 began to settle down, I was again placed on immunosuppressants due to disease activity. There was definitely a shift in my response to COVID-19: In almost every social situation, I was always the more cautious one. But there’s nothing quite like the fear of being immunocompromised amid a worldwide pandemic.
Today, here I am, still on immunosuppressants.
So I don’t feel encouraged. I feel discarded, left behind like trash. Being a disabled person in America means you come to the realization fairly quickly that policymakers and the general public have a particular contempt for your existence. A part of you almost gets used to hearing ideological commentaries that border on eugenics. But that doesn’t stop the comments from hurting; somebody telling me that I am a drain on society will never not sting. You end up building a wall to protect yourself, like rough, irritated skin that callouses over. The study that Walensky cited is worrisome to me, and the idea of anyone finding those results encouraging feels like ripping open a calloused wound.
I have felt let down throughout this pandemic, most of all by government officials, but also by all of the people who are ditching masks or getting together for large holiday parties and dinners during spikes in infections, creating super-spreader events. I have felt little pieces of me get ripped away with each new guidance issued by the CDC, such as the recent shortening of recommended isolation and quarantine periods.
The CDC now recommends that people who are up-to-date on their vaccinations who get exposed to COVID-19 but don’t develop symptoms don’t have to quarantine. They should, however, “avoid immunocompromised people” for a full 10 days. But with limited contact tracing, and many of us coming into contact with strangers daily, there is no realistic way for people to know if they’re interacting with immunocompromised people while they're carrying the virus. As is so often the case, the guidance has left me confused as to what, exactly, the CDC expects us to do.
Sick and disabled people have reasons to leave their homes just as much as anybody else. We deserve to see our doctors and access medical care. We deserve to be able to go to the grocery store and to live our lives without fear of imminent illness and death. Sick and disabled people deserve to have our lives and deaths respected and honored. The deaths of high-risk people were never encouraging, and never will be encouraging. It was a tragedy, it is a tragedy, and will always be a tragedy that our government did not do everything in its power to protect and honor the lives of chronically ill and disabled folks.
I am chronically ill, and my disabled life is worthy.
Want more from Teen Vogue? Check this out: COVID Omicron Variant: What to Know
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