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“I’m preparing myself to die.” Charis Hill, a disability rights activist who is living with Ankylosing Spondylitis (AS) shared as I asked them about what life is like for them since the coronavirus outbreak. Charis has been having breakdowns, while navigating the responsibility to share life-saving information with the larger community of immunocompromised people. “For the past 2-3 weeks, we have been carrying this heavy load on our shoulders of trying to get people to listen to how serious this is. What’s most important to me is that me and my community get through this.”
Charis makes clear a problem with how we’ve been relating to coronavirus. The most high risk among us have the least information as to how to stay safe (some exceptions here and here) and are simultaneously told that they’re most in danger. And the advice given to low-risk people often doesn’t apply for them. For example, Charis shared, people with compromised immune systems are mocked for wearing masks, because CDC advises against it, meanwhile their doctors have advised them that they need them.
The contagiousness of the coronavirus has proved that one person’s health is everyone’s health. And it’s all of our responsibilities to keep each other healthy, particularly the most vulnerable amongst us. But how do we do it?
Charis’ first piece of advice is to bring supplies, groceries, or even money to friends who are immunocompromised. To lower-risk people, a trip to the grocery store, full of germs and panic may surge anxiety, but to higher-risk people, the trip may feel lethal. Next time you go to get groceries, reach out to your immunocompromised friends and ask: I’m going to the store. What can I get you? It also might look like asking “do you have any meds that I can pick up for you?”
It’s also important to help immunocompromised people feel less isolated amidst all of the social distancing. This can look like virtual calls, text check-ins, or even in-person meetings if friends are comfortable. “I have friends over, but ask them to stay ten feet away, hang out in my backyard, and not touch any gates,” Charis shared.
Generally, it’s vital for low-risk friends to respect these physical boundaries, and also respect emotional ones. To Charis, that looks like holding space for the anxiety of immunocompromised people while also being ok with them not wanting to talk about their panic. This looks something like: hey do you want me to distract you right now or do you want to talk about what’s happening in your life today?
What’s not helpful is minimizing the very real concerns of the immunocompromised by saying things like “you’ll be fine” or “don’t worry.” This minimizing feels more silencing and delusional for immunocompromised people than it does helpful. Validating the very real fears of immunocompromised people might look more like “It is okay to feel worried right now. Your fears are understandable.”
But it’s not just about preparing for the panic; it’s also about finding joy. As threatening as coronavirus is, we’re still alive and there’s more to life than the virus. Charis especially appreciates friends who make plans for the future with them, providing them with hope and anticipation, faith that there is life after coronavirus.
And ironically, Charis shares, planning for death—writing a will, getting a power of attorney—allows them to find joy. “By planning ahead, I’m giving myself the space to live in the moment, to take it one day at a time and find joy, because I don’t have to worry about plans. Being prepared allows me the space to exist where I am today.”
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