While many people in the U.S. have abandoned COVID-19 mitigations like vaccines and masking, the virus remains dangerous for everyone, and some groups face higher risks than others. Immunocompromised people—whose immune systems don’t work as well as they should due to health conditions or medications—are more vulnerable to infection and severe symptoms from the virus.
Public Good News spoke with three immunocompromised people about the steps they take to protect themselves and what they want others to know about caring for each other.
[Editor’s note: The contents of these interviews have been condensed for length.]
PGN: What measures have you been taking to protect yourself since the COVID-19 pandemic began?
Tatum Spears, Virginia
From less than a year old, I had serious, chronic infections and have missed huge chunks of my life. In 2020, I quit my public job, and I have not worked publicly since.
I have a degree in vocal performance and have been singing my whole life, but I haven’t performed publicly since 2019. I feel like a bird without wings.
I had to stop traveling. Since no one wears a mask anymore, I can’t go to the movies or social outings or any party.
All my friends live in my phone now. It’s a community of people—a lot of them are immunocompromised or disabled in some way.
There are a good portion of them who just take COVID-19 seriously and want to protect their health, who feel the existential abandonment and the burden of all of this. It’s really isolating having to step back from any sort of social life.
I have to assess my risk every single time I leave the house.
Gwendolyn Alyse Bishop, Washington
I was hit by a car when I was very young. I woke up from surgery, and doctors told me I had lost almost all of my spleen. So, I was always the sickest kid in my school.
When COVID-19 hit, I started working from home. At first, I wore cloth masks. I didn’t really learn about KN95 masks until right around the time that COVID-19 disabled me. [Editor’s note: N95 and KN95 masks have been shown to be significantly more effective at preventing the transmission of viral particles than cloth masks.]
I actually don’t get out much anymore because I am disabled by long COVID now, but when I do leave, I wear a respirator in all shared air spaces. My roommate and I have HEPA filters going in every room.
And then we test. I have a Pluslife testing dock, and so we keep a weekly testing schedule with that and then test if there are any symptoms. I got reinfected [with COVID-19] last winter, and a Pluslife test helped me catch it early and get Paxlovid. [Editor’s note: Pluslife is a brand of an at-home COVID-19 nucleic acid amplification test, which has been shown to be significantly more effective at detecting COVID-19 than at-home antigen rapid tests.]
Abby Mahler, California
I have lupus, and in 2016, I started taking the drug hydroxychloroquine, which is an immunomodulator. I’m not as immunocompromised as some people, but I certainly don’t have a normal immune system, which has resulted in long-term infections like C. diff.
I started masking early. My roommates and I prioritize going outside. We don’t remove our masks inside in public places.
We are in a pod with one other household, and the pod has agreements on the way that we interact with public space. So, we will only unmask with people who have tested ahead of time. We use Metrix, an at-home nucleic acid amplification test.
While it’s not easy and it’s not the life that we had prior to COVID-19’s existence, it is a life that has provided us quite a lot of freedom, in the sense that we are not sick all the time. We are conscientiously making decisions that allow us to have a nice time without a monkey on our backs, which is freeing.
PGN: What do you want people who are not immunocompromised to know?
T.S.: Don’t be afraid to be the only person in a room wearing a mask. Your own health is worth it. And you have to realize how callous [people who don’t wear a mask are] by existing in spaces and breathing [their] air [on immunocompromised people].
People think that vaccines are magic, but vaccines alone are not enough. I would encourage people to look at the Swiss cheese model of risk assessment.
Each slice of Swiss cheese has holes in it in different places, and each layer represents a layer of virus mitigation. One layer is vaccines. Another layer is masks. Then there’s staying home when you’re sick and testing.
G.A.B.: I wish people were masking. I wish people understood how likely it is that they are also now immunocompromised and vulnerable because of the widespread immune dysregulation that COVID-19 is causing. [Editor’s note: Research shows that COVID-19 infections may cause long-term harm to the immune system in some people.]
I want people to be invested in being good community members, and part of that is understanding that COVID-19 hits the poorest the hardest—gig workers, underpaid employees, frontline service workers, people who were already disabled or immunocompromised.
If people want to be good community members, they not only need to protect immunocompromised and disabled people by wearing a mask when they leave their homes, but they also need to actually start taking care of their community members and participating in mutual aid. [Editor’s note: Mutual aid is the exchange of resources and services within a community, such as people sharing extra N95 masks.]
I spend pretty much all of my time working on LongCOVIDAidBot, which promotes mutual aid for people who have been harmed by COVID-19.
A.M.: An important thing to think about when you’re not disabled is that it becomes a state of being for all people, if they’re lucky. You will become disabled, or you will die.
It is a privilege, in my opinion, to become disabled because I can learn different ways of living my life. And being able to see yourself as a body that changes over time, I hope, opens up a way of looking at your body as the porous reality that it is.
Some people think of themselves as being willing to make concessions or change their behavior when immunocompromised people are around, but you don’t always know when someone is immunocompromised.
So, if you’re not willing to change the way that you think about yourself as a person who is susceptible [to illness], then you should change the way that you consider other people around you. Wearing a mask—at the very least in public indoor spaces—means considering the unknown realities of all the people who are interacting with that space.