Last April, a few weeks into pandemic lockdown, a strange phenomenon occurred. Friends and acquaintances messaged me to say they, in so many words, “finally understood what my life was like.” I didn’t know how to respond to those messages then, but I think I do now.
See, I’m chronically ill. I live with Crohn’s, an incurable disease that causes my immune system to attack my digestive system, and celiac disease, an immune response in the small intestine to gluten. Celiac has been fairly easy to manage with a strict gluten-free diet, but Crohn’s has landed me in the hospital more times than I can count, forced me to try dozens of medications, required invasive procedures, and put me at risk for life-threatening bacterial infections, one of which needed fecal microbiota transplants to go away. Thanks to infliximab, a very expensive (we’re talking $70,000) medication I get via infusion every six weeks, my illness has been relatively controlled since 2017.
Because infliximab suppresses my immune system, it makes me more prone to infections. I had a bout of chicken pox in 2016 that lasted three months and required hospitalization. When I get colds, flus, urinary tract infections, and other bugs, they last weeks and sometimes months. I barely leave the house during flu season. I’m likely to wind up ill from going to parties, concerts, airports, subways, and offices, so I’ve adjusted my life to minimize or avoid these risks. I’ve been social distancing and self-quarantining for years as needed. I’ve worked from home since 2018. I wash my hands often and wear masks. I don’t go to bars and rarely venture to a restaurant. Strangely enough, chronic illness prepared me well for the COVID-19 pandemic.
My beloved home, New York City, was early on the hardest-hit area in the country. I wasn’t worried about getting COVID since I was taking every precaution not to (and was privileged enough to stay home), but I was afraid my Crohn’s symptoms would flare up and I’d need to go to a hospital, where the viral risk would be too great and the system too overwhelmed. My husband, Greg, was terrified that simply running out for milk would bring the virus home. If I caught COVID, I could end up incredibly sick and likely hospitalized. Greg became adamant: “It isn’t safe here. We need to go now. Not in three days. Now.”
When Greg said we had to leave, I knew it was serious. With encouragement from my doctors, we packed up our dogs and drove south through the lush, rolling emerald of the Virginias to my in-law’s empty vacation home in rural North Carolina. I wasn’t sure if we were doing the right thing. To me, it felt like fleeing. There were media stories about rich folks leaving the city for the Hamptons, but more quietly among my chronically ill and disabled support circles, people left for their parents’ homes in some town you’ve never heard of. I can count a dozen more who, between March and August, moved out of New York City for good, as life was no longer doable with underlying disease and the risk of Coronavirus. I came to this conclusion: When you’re chronically ill in a pandemic, you do what you need to do to stay alive.
We spent one hundred days in North Carolina, going nowhere and seeing no one. When six weeks neared since my last infliximab infusion, my health insurance company had to grant permission for me to get it at the nearby center. Seems like an easy enough request, right? Here’s what I had to do to get my medication out of state:
Call my insurance company. Speak to representatives who say I can’t get my infusion outside of New York State and they aren’t making any concessions for COVID. Beg. Plead. Tell them it’s not safe for me to be in New York. Feel hot tears coming down my cheeks. Try not to get angry at the customer service reps I know don’t make the rules. Tweet at insurance company. Insurance company asks me to DM them my phone number, saying someone will call me. Hours pass—then days. DM insurance company again. Nothing. Tweet at insurance company since that seems to be the only way to get a response. Insurance company calls and says I can get my medication no problem: “Go to any CVS.” I explain it’s an infusion. They say I need prior authorization, meaning a doctor has to prove I need the medication I’ve taken for years. I ask: Do I need authorization from my gastroenterologist in New York, or from a doctor here in North Carolina? They’ll call me back. Email my gastro’s office to start prior authorization. Call nearby infusion center to be sure they provide infliximab. Set up appointment to see doctor at new infusion center. Know that after all this, insurance company could still deny treatment.
Wait. Get automated call. “Your doctor’s pre-authorization has been denied.” Tweet. Get other people to tweet. Talk to my mom. “I emailed Senator Schumer’s office!” she says. Talk to my sister. “My friends are signing up for Twitter to help you!” she says. DM insurance company. Go to bed. Wake up. Get phone call from insurance company. “Did you switch medication?” Remember that insurance company made me switch to a cheaper biosimilar last November. Tell them yes, I switched to infliximab-abda because you made me. “We’ll call you back.” Make sure my $700 monthly premium is paid (I don’t want to give them any reason to deny my coverage). Google “move to Canada.” Read tweets from people telling insurance company to do the right thing. Be glad for support but embarrassed that this is what it’s come to and angry for people who can’t wage this kind of public campaign. Get automated call. “Your doctor’s pre-authorization has been approved.” Call insurance company. “Is the approval for out of state?” I ask. They’ll call me back. Hours pass. Insurance company calls. “We have good news: Your out-of-state infusion has been approved.” Notice I haven’t taken a deep breath in three days.
The day I’m due for treatment, the infusion center calls and says I’m not approved after all. They cancel my appointment. I call the insurance company and leave a message. No call back. I call the infusion center to find out more. They’re closed. I call the next day. They’re at lunch. I call the insurance company again and leave a message. Wait. Two weeks delayed from my six-week schedule, I finally get my medication.
When I got back to Brooklyn after those 100 days, a letter from the insurance company was waiting for me: “We’re raising your monthly premium by 22 percent.” I am so tired. In a backward way, I was prepared for this problem. I was familiar with challenging the company on almost every decision they make; had I not been sick for so many years, I wouldn’t have known how to fight them (though I’m still in awe at the callousness of making me work this hard for such a simple request during a goddamn plague.)
But even if I was better prepared for a pandemic than most, I still woke up every morning from March through June with a thick, gnawing anxiety. For ten glorious seconds before my consciousness came online, I didn’t remember where or who I was. Then, like a cartoon piano falling on my head, The Dread kicked in. And bit by bit, my brain caught up to my body. My belly filled with painful gas. It felt like someone was playing a drum in my rectum. I developed fissures that felt like papercuts in my asshole. I saw a little bit of blood on the toilet paper, then more. Then a lot. The delay of my medication combined with the stress I couldn’t escape activated symptoms of my disease for the first time in three years.
I use this story—the leaving my home, the fighting with my insurance company, the effects of a delayed medication, the fear wreaking havoc on my body—to illustrate how the pandemic is different for chronically ill people. We’re navigating it all on top of managing unpredictable, incurable diseases that often flare up due to stress. I don’t mean to take away from the sheer terror and trauma we’re collectively experiencing, trying to stay alive while our government abandons us. The suffering that comes with lost work, income, and housing, and the grieving of a world that doesn’t exist anymore are things we’ll be navigating for a long time. So, while the constant fear and uncertainty offer some insight into what it’s like to live with chronic illness, if you’re able-bodied (and I pray you will still be when we reach the COVID finish line), there’s no way you could understand. And I wouldn’t want you to, as that would require you to become sick forever.
When able-bodied people say they “know what my life is like now,” I want them to translate those inklings of understanding into empathy. I don’t mean imagining how chronically ill and disabled people move through a world that isn’t built for them. I mean through action. I saw this on a graffiti sticker in my Brooklyn neighborhood, a quote by prison abolitionist Mariame Kaba: Let this radicalize you. Empathy is more than putting yourself in someone else’s shoes; it’s using your power to fight for changes that don’t directly benefit you. It’s more than understanding why another person feels the way they do; it’s learning about the systems that contribute to their emotions and behaviors, then figuring out how to help build—or dismantle and rebuild—those systems.
Maybe you rarely have to consider your health insurance, or think about what it means to exist in a politicized body, or save up a reserve for health emergencies. But your world is not the world. You must care even when—especially when—the issues aren’t immediately yours.
Excerpted from What Doesn’t Kill You: A Life with Chronic Illness – Lessons from a Body in Revolt by Tessa Miller. Published by Henry Holt and Company. Copyright © 2021 by Tessa Delheimer-Miller. All rights reserved.
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