I’m Immunocompromised and Freaking Out About the World Reopening

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For most of us, it’s been shock after shock living through this pandemic. As we adapt to how rapidly our world has changed, we grapple with the fear of an invisible disease.

For me, it’s been just like that — but worse.

When COVID-19 started taking over our newsfeeds, I had just returned to my job at VICE News after a year of medical leave. I had been diagnosed with lupus, a disease in which your immune system mistakenly attacks healthy tissue and organs.

My rheumatologist warned me that infections would cause a flare up of my symptoms. So would not getting enough sleep. So would eating the wrong foods. So would being in the sun. Hearing all this was stressful and frightening. Another thing my doctor said would make me sick is — you guessed it — stress.

Lupus weakens my immune system. The medications I need to treat it, including hydroxychloroquine (the anti-malaria drug that President Trump once hailed as a potential COVID-19 cure), make it even harder for me to fight infections. If I’m not careful, I could wind up hospitalized, or worse, from a common virus like the flu.

I became acutely aware of the tiniest changes in my body; temperature, energy, pain, inflammation, and the appearance of my skin. My anxiety went through the roof. I got used to not leaving my apartment. I’d order groceries, supplies, and clothing to the house. I quit using public transportation. I dried my hands out with hand sanitizer and started traveling with a face mask. Maybe that sounds familiar.

When COVID-19 was declared a pandemic, I had already started working remotely some days to limit my exposure to germs, and so that I could be comfortable at home if I was sick or in pain. It was depressing to be alone again. I spent hours on the phone earning trust from interview subjects I knew I’d never get to meet, in hopes they’d agree to share their story with a coworker who could travel more freely. I got bored and restless, but it was my best chance at staying well.

By the end of February, my doctors all agreed it was imperative that I stay home for the foreseeable future. Hardly surprising, but it still made me cringe. So I took a couple of days to regroup; I ordered enough groceries for a couple of weeks, and called in all my prescriptions. People online were talking about how they were having trouble getting refills for hydroxychloroquine as a result of the president’s “game-changer” comment. I had to wait a few days for them to be delivered, but I’m one of the lucky ones. I begged a medical supply company to deliver my insulin pump supplies a week before my insurance would allow a refill. I just didn’t know what to expect.

And then the nightmares began. I’d wake up drenched in sweat, holding my chest. I could hear nothing but my heart pounding. I almost always dream of everyday scenarios like waking up in my childhood home, but with strangers crowding every room. They coughed and sneezed on me and laughed at the terror on my face. I begged them to leave and they ignored me. In another dream, people followed me as I nervously ran through a parking garage looking for my car. Once, I even dreamt I was abducted by aliens but then realized I was safer with them than on Earth.

With an invisible disease like lupus, people don’t know they should be careful around you. Almost nobody in my apartment building wears masks or gloves. Doing laundry or grabbing my mail feels as risky as going to the store. Three months ago, I was nearly in remission. Many of my symptoms have returned since, along with the question: If I can’t go to physical therapy or acupuncture or get massages to manage my symptoms, when will it be safe to go see my doctor?

My friends and family try to ease my mind. They call and text and send memes. They offer to pick up my groceries, run errands, and dogsit. But there are also moments they complain about the lockdowns or brag about what they’ll get to do when this is over. And I know telling them I resent that won’t make me feel any better.

I do find some comfort in speaking to people who face similar health challenges, even if they’re complete strangers. Reading posts in online support groups used to send me into a spiral of hopelessness. Now, I peruse them to feel understood and validated. People are scared about whether or not they’ll be able to refill their prescriptions for a drug they need to stay alive. They’re scared because they can’t find hand sanitizer or masks and that some “healthy” people refuse to stay at home. They’re scared that this will ruin their chances at being “healthy” too.

The loss of 30 million U.S. jobs makes the economic impact of COVID-19 hard to ignore. I get that people are itching to get back to work. But the stay-at-home orders aren’t meant to keep us cooped up; they’re meant to keep people like me from dying.

With the majority of states at least partially reopening, we’ll know in the coming weeks if we’re moving towards that so-called ‘new normal’ everyone talks about or if the country will once again descend into chaos. For people like me, not much changes. I’ll be at home until a vaccine is available to everyone. I’ll watch when my friends post on social media about finally going to yoga, or to the movies, or on that long-awaited vacation abroad.

I’ll be happy for them. I really will. But I’m not sure if I’ll ever feel safe doing those things again.