I’m a chronically ill student, and one-way masking isn’t enough

A few weeks ago, I got to my French class early and sat down on a bench in the hallway, wearing my mask. I’m a graduate student at UC Berkeley and always have to arrive to classes early, due to being out of breath from walking—a side effect of my vasculitis, an autoimmune disorder that causes my blood vessels to become inflamed. 

An unmasked person sat next to me, and started to cough. 

Four days later, I tested positive for COVID-19. 

After developing a cough and respiratory issues, I was able to get a prescription for antivirals, and after six days, my respiratory symptoms got better. But I still feel out of breath and exhausted, which also means COVID-19 likely triggered a vasculitis flare.

As an immunocompromised student who must now attend in-person classes, I have planned my life around minimizing my exposure to COVID-19. This includes not hanging out with large groups of people at social events, and turning down invites for in-person work-related networking events.

Of course, I do not know for sure that that person gave me COVID-19, but I do know that one-way masking was not enough to prevent me from getting sick.

University leaders, like mine in the University of California system, are very aware that chronically ill and disabled students, faculty, and other staff are part of their communities. And yet, we receive emails emphasizing talking points that “COVID-19 is mild” and that a mask mandate won’t be put back, despite cases that rise in fall. 

We’ve now moved into a phase of the pandemic where we are expected to make individual choices about mask wearing. But, unfortunately, individual choice doesn’t work very well when we’re dealing with a pandemic spread via air. 

Many people who are still masking, like me, are asked why we’re doing so when we could just move on. But for many disabled and chronically ill people, moving on isn’t possible. And questions about why we continue masking are awkward at best, and invasive at its worst. They force us to either brush the questions off, or feel pressured to reveal our diagnoses. 

As long as COVID-19 is killing thousands of people a week and causing many more to develop long COVID, institutions owe it to their communities to minimize our risks of getting sick. It’s an equity issue, a public health issue, and a disability rights issue. Disabled and chronically ill students, faculty, and staff deserve reasonable accommodation to be able to access their campuses more safely. This is especially true as many universities (including UC Berkeley) have now largely rolled back the options to take virtual classes.

For disabled and chronically ill people at universities, death is the worst—but not the only—terrible possible outcome. I had to leave university when my then-undiagnosed vasculitis was not being managed in late 2017, which was very hard to do in undergrad, especially as someone shortlisted for the “teacher’s pet” superlative in high school. If my vasculitis, which also includes severe fatigue and chronic pain, becomes unmanaged again, my ability to remain a student will again be in jeopardy. 

I want to be able to finish my graduate degree program on time, which I am on track to do. But that may change if my vasculitis becomes uncontrolled. Because COVID-19 and vasculitis both involve blood vessel issues, it is unlikely that COVID-19 would not affect my autoimmune disorder. The work I have to do is also piling up, which is scary for me as someone who has gone through phases of struggling to keep up with work while sick.  

If universities put mask mandates back for as long as COVID-19 remains a serious problem, they would be promoting what is referred to as “universal design.” Under universal design, disabled and chronically ill people are welcomed into university spaces because accessibility is built into their design. During an infectious disease outbreak, mask mandates are absolutely part of universal design.

As someone who has been hard-of-hearing since birth, I do recognize that masks can be inaccessible. It wasn’t until the pandemic that I realized just how much I relied on lip-reading, which I addressed by starting to wear my hearing aids regularly again. With exceptions for people who genuinely cannot wear masks due to their disability, everyone should be masking.

Every time I read about “fatigue” with mask wearing, I have a hard time not rolling my eyes because I understand what actual fatigue is like. I experience fatigue with my vasculitis on a daily basis, and contracting COVID-19 scares me, in part because it can make my fatigue worse.

I challenge people who are not at high risk for COVID-19 complications to think about what it must be like trying to attend university (or go into work every day) while also trying to avoid getting COVID-19. 

Why wouldn’t people wear a mask to protect “vulnerable” members of our community, who are statistically part of every college campus? Why is it always the disabled or chronically ill student or professor who has to ask people to wear masks? Why can’t people just show solidarity? I ask myself these questions daily. In my classes, many people only put on masks once I mentioned my risks for COVID-19, which is a tiring thing to keep repeating. Especially to people who know me. 

After I recover from COVID-19, I will continue to wear a mask. And I challenge other university students, faculty, and administration to do the same.