I am standing near the door of the subway car as the train on the Seventh Avenue line comes to an abrupt stop. As I reach out and grab the metal pole in the middle of the car to steady myself, I look up and find that all eyes are on me. They are indignant, it seems, that I grabbed the pole with my hand after just coughing into the crook of my elbow.
My gaze moves from face to face and it strikes me: I am no longer the only one on this train worried about getting sick. What stuns me isn’t their disgust at my cough or their rush to grab their newly purchased bottles of hand sanitizer, but rather that the coronavirus outbreak might be the first time they are fearing for their health and, subsequently, for their life.
I’m only 27 years old, but I have already confronted and dealt with the limits of my health. Within my peer group this may be rare, but I’m far from alone. According to the National Health Council, around 133 million Americans live with incurable or chronic diseases — that’s 40 percent of the public. Our lesson for the corona-concerned is modeled in our daily actions: we still get out of bed and move through life even though we often meet new and unpredictable threats to our health. In many ways, to us, nothing has changed.
I was born with a rare liver disease resulting in the need for two liver transplants, both when I was 11 years old. As someone who has lived an entire life with a chronic illness and survived some steep mortality odds, I have plenty of empathy for what it’s like to question your safety in the world. It’s the invisible weight I carry with me, always.
Packing bags was one way my family prepared for the unexpected but frequent health emergencies after my transplants. We kept our suitcases packed and lying around the house, just in case we had to get to the hospital quickly. When I look at what seems like the world’s version of my very personal journey with health anxiety, I feel acknowledged in a way that I have not experienced before. Packing bags in case you need to make an urgent run to the hospital is kind of like stocking up a freezer full of what my roommate deems her “coronafood.”
But years of living with transplant complications, including a compromised immune system, have taught me how to live despite this fear, how to navigate a world rife with potential danger at every turn. Trust me, in a strange effort to keep healthier people calm, my credibility and need for vigilance is made clear by news anchors feeding us updates: If you are currently living without an illness or disability, my risk of dying from the coronavirus is higher than yours.
My coronavirus advice, I should say, is also my greater life advice.
Years ago, when my doctor told me I might need to be put on the organ list for a third transplant, I responded by leaving town the next day for a summer internship in New York. I was not being reckless. I did this only after scheduling a visit to meet a local doctor who could take care of me, if the need should arise. In the days of the coronavirus, I take the subway to and home from work, but I also diligently wash my hands afterward. Don’t alter your life in dramatic ways, but do make sure that the risks you take are calculated ones. Be social, but don’t hang around sick people. Get your haircut, but don’t touch your face. Go out to dinner, but don’t share food.
Throughout an average day in New York, I share space with hundreds of other people, all of whom I have no control over. Should a friend come to my apartment, should I go on a date that ends with a kiss, should I see Billie Eilish perform when she comes to town, I will lack control over my exposure to the virus. To respond to this reality, l do what I normally do: make my calculations and ensure that my risks are minimal, and then let it be. Because here’s the thing: the life that I’m working so hard to protect is not really a life at all if it is consumed by fear.
I’m not saying I’m not afraid or that you shouldn’t be. My fear is my constant companion, but I can manage it alongside my desire to live a full life. I can channel this fear into a boldness for the other things that scare me. Growing up with an uncertain future, I was able to achieve some of my wildest goals: giving a TED Talk, starting a nonprofit and creating a summit to empower young women. Befriending my fear is my superpower, and it turns out, that I’m not alone here either.
Last week I spoke to some others I know with illnesses that have shaped or influenced their approaches to life. For Tonya Ingram, who lives with Lupus, health anxiety has changed her daily decisions: “My kidneys failing keeps me present because I have no idea what next year will look like for me,” she said. “Arguments that aren’t worth the stress are released, the extra fries are ordered, the crush is informed, the story is told. It makes me question what is worth my energy.”
Matthew Cortland, who lives with Crohn’s disease, channels his fear into political action. He believes the system is stacked against disabled people: “I have to remind myself, ‘don’t just panic, do something.’ And then I fight for change. By organizing with other chronically ill folks and reaching out to elected officials with our concerns and needs, I feel better, and hopefully, accomplish a bit of change that makes things better for everyone.”
For all three of us, when the fear strikes we push it forward, change its shape, alter its impact. We have it but we don’t let it have us. Coronavirus-panic is natural, but if our fear is going to be there, we might as well put it to use and make it work for us — for our goals, for our perspective and for others
Kendall Ciesemier is the co-host of the health podcast That That Don’t Kill Me..