Outside BluesChronically Ill People Face an Old New Post-Pandemic World

Photo credit: Anthony Tran/Unsplash

I have a confession to make: When COVID-19 shut the world down in March 2020, I was glad—relieved, even. Suddenly, everyone had to stay home and worry about their health. It wasn’t just me anymore. My life has been blotted with illness. As a child, I had intractable migraines that forced me to miss school and lay in darkened rooms with ice packs sweating over my eyes. In my early 20s, I was diagnosed with cancer. (When I went back to my neurologist and told him about the cancer diagnosis, he looked at me and said, “If you were a horse, we would’ve taken you out back and shot you by now.” I cried the whole way home.) When I went into remission, things seemed okay within the walls of my body. (I know most people don’t see their bodies as a prison, but I always have.) My migraines were under control. I was still more tired than I was before I had cancer, but I was dealing with it, and then, two years ago, I got into a car accident—the kind where you hit your head and don’t wake up for 10 minutes. The kind where your brain bleeds and you always have floaters dancing through your vision. The kind that comes with a new diagnosis: traumatic brain injury (TBI).

Since the car accident, my world has narrowed. It had to. My TBI came with many new symptoms: extreme, debilitating headaches; an inability to stay awake for more than six hours at a time; a resting level of anxiety and dread about the world that made it hard to get out of bed; and a new hypervigilance that left me unable to stomach being outside of my apartment. Constant pain has become my companion. Sometimes, it simmers below the surface long enough for me to write something like this article. Other times, it leaves me under the covers for days. I quit my job because they wouldn’t let me work from home, though my job could be done remotely. I stopped seeing friends who couldn’t come to my apartment to visit around my nap schedule. My days were stacked with doctors’ appointments: neurologists, TBI specialists, neuropsychiatrists, therapists, and ophthalmologists. I went to the pharmacy so often that every employee learned my name. My life was a loop, and then COVID shut the rest of the world down and people started having to live a little bit like me.

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Suddenly, everyone—except essential workers—was spending their days within the confines of their homes. Their worlds narrowed too, and I was glad. I selfishly relished my boyfriend working from home and being in the apartment to help me when I spiraled mentally or when I was too sick to refill my ice pack or find my medications. I was glad my friends were stuck inside their houses and not going out without me. For once, I wasn’t missing out because there was nothing to miss out on. Everything slowed down, and I was so wildly relieved. I’m not proud to admit that quarantine worked for me because, in a way, it was already my reality. Of course I wish that COVID hadn’t happened and that hundreds of thousands of people were still alive. But two things can be true at once, and in my small, selfish world, I felt less alone than I had in years.

Now the end of the pandemic is near in the United States and friends will ask me to meet in crowded, loud buildings again. People are getting vaccinated, businesses are reopening, and classes are resuming. I know how many people have been depressed beyond measure after living inside for a year. I’m glad life is resuming, but I’m also painfully aware that I’m about to start disappointing people again. For the past year, I didn’t have to. There were no happy hours to flake on at the last minute because I wasn’t feeling good. There were no plans to cancel the morning of because my migraine woke up with me. It’s time to dust off my old catchphrases: no, I can’t go. No, I don’t feel good today. No, it’s too loud there. No, no, no.

The world is ready to move on. But for millions of other disabled and chronically ill people, there is no moving forward.

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I’m not alone in these feelings or observations. Lara Parker, a writer with endometriosis, said it was difficult to watch able-bodied people experience a small taste of what a chronically ill life is like and judge it as “pointless, boring, and not worth living. Life never goes ‘back to normal’ for us and while I don’t expect able-bodied people to always understand that, some level of compassion and sympathy would be nice.” As the United States clears 300 million vaccination doses administered, chronically ill and disabled people are hoping that the accommodations they were able to access during COVID don’t disappear. Parker says being able to work remotely has changed her life. “I don’t have to worry about if I get to work and suddenly have a pain flare and wonder how I am going to make it home,” she says. “I don’t have to spend so much of my energy on a commute or just getting ready in the morning. This is an accommodation I’ve always needed but never felt like I could ask for. Moving forward, I will absolutely not accept anything less than this option permanently.”

Tauhid Chappell, who has ulcerative colitis, hopes the pandemic—which has forced many otherwise healthy people to navigate the bureaucratic, expensive, and exhausting healthcare system for the first time—helps able-bodied people understand that “this country does not provide adequate support if anyone gets sick, unless you’re extremely privileged.” Going forward, Chappell says he hopes there is more for support at the local, state, and federal levels to help people with underlying and chronic conditions and disabilities. Kate McCrea, who has severe migraines, says she was relieved she didn’t have any plans to break during the pandemic. “I loved not having to make excuses for not being able to do things. If I get a migraine, I can’t leave my bed, much less drive somewhere to meet friends in a crowded, loud building.” The world is ready to move on. But for me and my body, and millions of other disabled and chronically ill people, there is no moving forward. For the past year, people met me where I was. And now, I’m going to have to try to force my sick body to meet them where they are—outside.

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by Fortesa Latifi
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Fortesa is a journalist based in California who writes about chronic illness and politics.