The following post is part of our series on perspectives from disabled and chronically ill people regarding COVID-19. This post is not intended as medical advice.
As someone who takes comfort in a daily routine, my days don’t differ all that much. I wake up late, with no particular place to go, prepare a nutrient-dense, immune-boosting meal, and pass much of the day on my computer catching up on emails. I spend a lot of time resting, I spend a lot of time feeling bored, and I rarely go out except for essential trips to the grocery store or laundromat. I don’t often socialize, and I binge-watch my fair share of Netflix.
In this era of the coronavirus pandemic and the age of social distancing, people all over the world are now passing their days much as I do. For many of them, life seemed to change overnight.One day, they were working, exercising, dropping their kids off at school, taking classes, eating in restaurants, partying;the next, they were cooped up at home as the hours stretched by and worries about their health and wellbeing gathered in their chests like a thick knot. Right now, most of us are staying home. But my slow-moving, isolated way of life has nothing to do with a global pandemic.
For more than two years, I have lived with a debilitating chronic illness. Although I am now in treatment and recovering my health, the past few years of my life have strongly resembled what the world at large is currently experiencing. For all these months, I’ve lived mostly inside my apartment. Anchoring rituals and hobbies such as yoga and running have fallen away. Social distancing has been no stranger to me, as family and friends made uncomfortable by my illness exited my life. I’ve been on immune-boosting herbs, supplements, and other natural remedies, and have had to take extra care exposing myself to crowds. I’ve had to work from home. And I know I’m not alone.
As more and more people around the world self-quarantine and socially distance, they’re beginning to adapt to a life that is old hat for the chronic illness community. Friends have flooded my social media feed with stories and thoughts about how little their lives have changed. It’s almost like we’ve been in training for a global pandemic; some of us, unfortunately, have been training for years or lifetimes. But while the chronically ill have historically been an ignored and and even maligned community that faces discrimination and formidable logistical obstacles to living safe and fulfilling lives, the COVID-19 outbreak has prompted a wholesale shift in life as we know it for those that are now joining us—albeit temporarily—in staying at home.
Within days of the start of socially encouraged or governmentally mandated isolation—which, for those of us in the U.S., began in mid-March—a raft of provisions intended to accommodate and even brighten a stay-at-home lifestyle came into effect. Many types of workers were granted permission by their employers to work from home for full pay. News websites and blogs began publishing guides to staying productive and happy while shut in. Yoga classes, therapy sessions and doctors’ appointments went virtual. Musicians started streaming free concerts online. And to maintain connections from afar, families and friends logged onto Zoom and FaceTime, catching up, trading news, and even participating in events like baby showers and birthday parties.
It’s been wonderful and almost unbelievable to witness the pace with which humans have adapted to this crisis. But with very few exceptions, such fundamental accommodations have rarely been made for those of us suffering from chronic illness. Instead of being given the option to work from home, we’ve lost jobs. Instead of being granted governmental aid such as unemployment wages and safety from eviction, we’ve faced formidable challenges to drawing disability support. Instead of being able to take a class or attend a happy hour online, we’ve been cut off from the forms of social contact we knew before we got sick.
Since the coronavirus crisis began, members of my chronic illness community have been opening up online with a kind of “welcome to my world”-type message.
“This is your COVID-19. This is our #chronicillnesswarrior every day,” she writes. “They are letting you work from home while we’ve been losing jobs for asking for the same. You are going ‘insane’ from being cooped up, we get gaslighted when we explain our depression. You are spending hundreds on supplements and medications to keep your immune system strong, we’ve been spending this and will be for the rest of our lives.”
“In a few weeks or months,” she continues, “most of you will go back to your regular lives. We won’t, and will once again be stripped of the accommodations.”
“Able-bodied folks: take a moment to acknowledge that this period of altered reality and limited access is day-to-day life for the chronically ill, immunocompromised, and disabled,” she writes. “You know how powerless you’re feeling? Imagine experiencing that while everyone around you is living normally.”
“I hope that this time of self-reflection really opens the hearts of those of you who are healthy,” she adds. “Your understanding means the world to us. Use this experience to gain insight into the reality some live—one that will not change in a few weeks or months.”
As a community, we are not bitter, and we wish everyone the best in these unprecedented times. But we hope that this pandemic will lead to more empathy and understanding, leaving citizens for whom this time of isolation is only temporary with a little more respect for and a little more willingness to accommodate those of us who face loneliness, health concerns and logistical difficulties on a daily basis. Of the many lessons we learn in the wake of coronavirus, let one of them be that we’re more inclusive of and more adaptable to the vulnerable and isolated among us—every day, whether there’s a public health threat or not.