You might not know from seeing me, but I have two chronic diseases—psoriasis and psoriatic arthritis. My immune system is on overdrive all the time, which means that I have to take immunosuppressant drugs in order to help manage my conditions. A suppressed immune system, as you can imagine, is the last thing you’d want when facing a global pandemic such as COVID-19.
I have been on high alert since March 2, when cases started to escalate in the U.S., but until recently it felt like I was the only one who understood the looming reality of self-quarantining, stringent hygiene practices, and avoiding social contact. I’ve been on edge and nervous for weeks. I enforced strict boundaries to ensure people don’t touch me, stayed inside my apartment as much as possible, and increased all of my normal self-care measures to where they feel more like survival techniques. As someone who has been living with a compromised immune system for almost three decades, these feelings have always been present on some level. But what used to be a low-grade hum in the background has officially taken its place front and center in my life and the lives of millions of others out there.
I’m not the only person who is facing this challenge—as many as 4 percent of U.S. adults are considered immunocompromised, meaning that they have weakened immune systems due to health conditions (such as HIV/AIDS and cancer) or necessary medications. Four percent of the American adult population nets out to roughly 9 million people. Add on top of that the 133 million Americans who have chronic diseases, many of which (like heart disease and diabetes) are risk factors for COVID-19. That’s a whole lot of people who are uniquely vulnerable to infectious, contagious diseases like this novel coronavirus.
Yet the way that we’re currently talking about this population feels like more of an afterthought. I’ve heard so many people talk about this virus and then say “but only very old people and those with compromised immune systems are at the greatest risk” as if we are a rarity and there are few of us. This othering that’s happening in the messaging about safety precautions and prevention doesn’t paint an accurate picture of who is especially vulnerable to this disease. It also makes people be a lot more cavalier with their actions because they don’t necessarily think about how there are likely people they know who could have a chronic disease or a compromised immune system. But this virus spreads through person-to-person contact; while one person in their 30’s might have mild or no symptoms at all, I could become deathly ill through touching or interacting with an infected person.
Now is the time where people really need to understand that we’re not alone in this; that the actions of one healthy, able-bodied person has the potential to really damage my health and the health of others like me.
Compounding the problem is the fact that many chronic and immunosuppressive conditions are “invisible” to the naked eye, so the burden currently falls on us to be super vocal about our health. I’ve been making sure all work meetings are virtual for the past two weeks, trying to isolate myself, and the times where I have had to meet up with people, I’ve set clear boundaries about not touching me for the sake of my health.
That undertaking is, to be honest, super frustrating. I’ve spent the last decade and a half really trying to create my identity as a whole person, and not solely as a sick person. Yes, I know that there are times during flare-ups where I cannot escape my body and my symptoms, but for my mental health, I’ve really worked to embrace the other aspects of my being—being an entrepreneur, being a woman of color, being here. The whole picture. It’s been uncomfortable having to be so focused on the sole fact that I have a chronic disease; a fact that could make it dangerous if I contract this novel coronavirus. But I’m doing it for my own survival.
People like me have been advocating for themselves and their health for years. But with this crisis, now is the time where people really need to understand that we’re not alone in this; that the actions of one healthy, able-bodied person has the potential to really damage my health and the health of others like me. Every time a person goes out and tries to hold on to their “normal” life, they’re increasing the risk of impacting someone else’s life in a way that could result in them losing their life. We all need to take responsibility at this moment.
What can you do? For one, please respect the health of people like me and practice social isolation as much as possible. Do all the things we’re supposed to be doing right now, like wash your hands regularly, use sanitizer when you can’t wash your hands, and avoid touching your face or other people. It might seem basic, but these actions go a long way towards keeping our entire global community safe.
Also, take the time to check in on your loved ones who have chronic illnesses or who are otherwise uniquely vulnerable to the novel coronavirus. Even if they seem like the strong one, know that loneliness and isolation are inherent in dealing with a chronic illness, especially now with social isolation in full swing in many states across the country. Things are scary right now for all of us, and knowing that our support systems are still in place (even if we can’t see each other face-to-face) is so important.
I urge everyone to remember that we are all connected. Every step you take, every interaction you have, truly can impact someone else. That’s always been the case, but I don’t think we’ve ever seen that fully until now. In doing your part, you’re helping protect not just your health, but that of tens of millions of Americans like me.
As told to Jessie Van Amburg.