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I’m Immunocompromised. Here’s How I Feel About Masking in 2023.

The hardest part of all this is that no one seems to care whether I live or die.

A discarded surgical mask lies on the sidewalk in Chicago, Illinois on April 1, 2020.

Part of the Series

I wasn’t surprised when the test results from my rheumatologist showed no COVID-19 antibodies, even though I had received all five doses of the vaccine that have been FDA-approved for immune-compromised folks like me. I knew the heavy dose of immune suppressants I take for my connective tissue disease made it likely that I would be in the estimated 3 percent of “moderately to severely” immunocompromised people who don’t respond adequately to the vaccine. While this was scary to hear, the upside was that I was eligible for Evusheld. Evusheld is “pre-exposure prophylaxis,” which means that it helps to prevent COVID infection and has been approved for emergency use in people that don’t respond to the vaccine or have had severe reactions in the past.

A few months after I received the two shots, (one right after the other), the FDA announced that Evusheld is not very effective against the newest variants that make up the majority of new infections. About 72 percent of new COVID cases in the U.S. are caused by omicron subvariants BQ.1, BQ.1.1, XBB and XBB.1, strains that scientists call the most resistant to date.

It’s not just Evusheld that the variants are rendering ineffective. One comfort that high-risk people previously had was that if we got COVID we could at least get monoclonal antibodies to help our bodies fight the infection. However, a December 13, 2022, study found that “all clinical monoclonal antibodies were rendered inactive against these variants.” The virus is mutating faster than the medication can keep up. This makes things especially dangerous for people like me.

While others are back to “normal,” I am back in isolation.

When elected officials like President Joe Biden declare the pandemic is over, they are putting disabled lives at risk. Especially dangerous for vulnerable people like me is that declarations like Biden’s have led more people to stop wearing masks in public spaces. Wearing masks saves lives. I am more scared of COVID-19 now than I have ever been, and the government has made clear that it is no longer even trying to protect us, which means we need to take steps to protect each other.

Even though most places no longer require masks, wearing one when indoors in public is an easy way to act in solidarity with disabled people. By simply wearing a mask, you can help to protect vulnerable people. You’ll also keep yourself safer! The increase in variants also means more breakthrough infections, even for people with fully functioning immune systems, and COVID reinfection increases the risk of permanent illness and death.

That doesn’t mean we shouldn’t also advocate for mask mandates (without criminalizing those who flout them) and other policies that have a broader impact on COVID rates and safety. I’m glad to see that some places are starting to require masks again, like the Philadelphia school system. We shouldn’t wait until everyone is sick first to start instituting measures that prevent sickness. As my grandfather would have said, that’s like “shutting the barn door after the horse is gone.”

Constant Fury

Those of us labeled “high-risk” have been afterthoughts throughout the entire pandemic. People talked casually about our deaths, and commentators wondered publicly whether our lives were worth small inconveniences. In the best case, we’ve been left behind. In the worst, we’ve been left for dead.

The hardest part of all this isn’t the fear or isolation, it’s that no one seems to care whether I live or die. It’s as plain as the uncovered nose on their face.

Sorry I can’t go on that trip. Sorry I can’t go that concert. Sorry I can’t come to your party. Sorry I can’t. Sorry for the inconvenience. Sorry for my body. Sorry. Sorry. Sorry.

I got used to isolation after my immune system started acting up years ago. Painful flares would require months in bed, the fatigue making it difficult to socialize at all. In the decade or so since I first got sick, I went from being known for being social to being lucky if I saw friends even once a month. The longer I have been sick, the fewer things I can do, and the more friends have fallen away.

When the pandemic hit, I was terrified. But I also felt prepared. My illnesses meant I would sometimes go months without leaving my house except for doctor’s appointments. I already did a lot of things remotely, and pajamas had been my main wardrobe since I gave up being a lawyer a few years ago when my symptoms got too bad. I was as ready as someone could be.

Or so I thought. One thing I was not prepared for was how angry I was. I was enraged about the U.S. government’s policy around COVID-19 that allowed both the virus and misinformation to flourish, but by then I’d become used to feeling constant fury toward those in power. The part that was especially hard was people showing by their actions that they didn’t care at all whether I lived or died.

One of the things that has made the isolation of chronic illness bearable is connecting to the disability community, and I’ve been excited to see a lot more people talking about the importance of centering disabled people. I was hopeful that it had penetrated enough that people would do the basics, at least among the socially aware people that I tend to know.

These are people who cried when Trump was elected, who are vaccinated and who complied with all the mask mandates (and complained with me about people who didn’t). They cared about “vulnerable” people. Until they didn’t.

When they stopped masking in public indoor spaces, I was disappointed. And confused.

What changed that made people take off their masks? COVID’s still prevalent, and as we go into winter, the numbers will go up. Besides breakthrough infections, there’s also the flu, RSV, and other viruses going around.

Setting the Norm of Solidarity

We mourned collectively last year when bell hooks died. One of her most famous quotes asserts that love is a verb. If we show our care through actions, then the opposite must also be true.

Obviously the COVID-19 situation has changed since the beginning of the pandemic, and I don’t expect everyone to live as limited as I am forced to. But wearing a mask is such a small thing to do, which is part of what’s so infuriating about people not doing it.

When others around me don’t wear a mask, they are effectively telling me: Your life is not worth this small inconvenience. I do not care about you. I do not care about other vulnerable people.

We can’t let the people who don’t believe in science or don’t care about marginalized people set the norms in society. If you care about disability justice, you need to wear a mask.