One of the things you hear a lot as a disabled person is: “You’re so lucky not to get to stay home and to go to the office every day!” As if not being able to leave the house because of a debilitating health condition is some sort of vacation.
Well, three weeks into shelter-in-place and state lockdown orders due to the global COVID-19 pandemic, when almost anyone who is able to do so is working from home and millions more are suddenly unemployed: how lucky do you feel? It’s not a blessing or a privilege not to be able to go to work or socialize with other people, is it?
No. Self-quarantine—whether from coronavirus, or because you literally are too sick to go out— is boring, lonely, isolating, and destructive to your mental health.
Self-quarantine—whether from coronavirus, or because you literally are too sick to go out— is boring, lonely, isolating, and destructive to your mental health.
It was early 2014 when I began getting really sick with symptoms like debilitating muscle spasms, severe pain, and chronic fatigue that kept me bed-bound. Doctors didn’t know what was going on, and neither did I. All I knew was that I’d gone from successfully navigating full-time work, graduate school, and the parenting of two young children, to barely being able to dress myself or move from my bed to the couch.
And yet, I still heard it: “Wow, what I’d give to get to stay at home in my pajamas each day!”
As the years progressed, I got my diagnoses, including: ankylosing spondylitis, chronic migraine, fibromyalgia, and psychogenic non-epileptic seizures. It took me years of doctors, treatments, and therapies to move from a place of being perpetually bed-bound to being able to leave the house. But even now, while I’m doing a lot better physically than I was five years ago, I still have multiple days every month that I spend in bed due to my symptoms, and even more days each month that I don’t leave the house because of them.
Now, suddenly, it feels like most of the world understands what I’ve been going through all these years. In the last few weeks as the pandemic has spread and “stay at home” orders have tightened, adults who maybe have never had more than a 3-day weekend at home are finding themselves cooped up in their house for weeks, with weeks more ahead of them. And my social feeds have filled up with tips from non-disabled friends on how to ‘survive’ this time of isolation.
There’s a part of me that is angry at all this. I want to snark: “But I thought I was lucky I get to stay home because of my chronic illness?”
There’s a part of me that is angry at all this. I want to snark: “But I thought I was lucky I get to stay home because of my chronic illness?” There is a stirring of anger that I didn’t expect. But I empathize too. I remember what it was like when I was newly disabled: how the days would all blend together, how I mourned the presence of my friends, how desperately I wanted to go out dancing or to have a meal. I remember those days I’d read and binge Netflix for hours, eat way too much, called everyone I knew, and still exhausted all possible ways of entertaining myself before the day was even half-done. The transition from being a participating member of society to being stuck at home with little connection to the outside world is hard, scary, and lonely for everyone.
And so I empathize with those who are learning for the first time what it is like to be stuck at home with limited options and very little connection to the outside world. That transition is hard, and scary, and can be really lonely.
To those able-bodied individuals reading this who may be struggling with this new norm of being home, I’d suggest this is a time to learn from the chronically ill and disabled people whose experience you have been knowingly or unwittingly discounting all these days. Here’s some of my own tips:
Use technology to your advantage. Connect with peers on social media, form group chats with your work buddies, and organize video calls for virtual drinks with your friends. Now that everyone—not just disabled people—need accessible ways to meet via technology, the landscape is changing fast. You can participate in dance classes via Facebook Live, or listen to the symphony streamed to you. Take advantage of these opportunities to stay connected. If you’re not as tech-savvy or prefer not to use social media, call up a friend on the phone and read to each other, or talk about a favorite TV show.
Rest. Seriously. It’s okay to rest. We are expected and socialized to be go-go-go constantly, our value measured by our productivity. But this just simply isn’t true; our value comes from places much deeper than that, and accomplishment in life is a lot more than checking things off on a to-do list. This is a stressful time for a multitude of reasons, and that impacts your health. Listen to your body and allow yourself to rest.
Discover your joy. Use this time to find new passions or to re-discover old ones. Dig out those paints that have been in the back of the closet for years and find some YouTube tutorials to teach you to use them. Google new recipes to use for the plethora of beans you now have. Learn a new language. All those things you have been saying that you wish you had time to do? Now you do.
These are just some examples. The point is deeper than that, though. Learn from us disabled folks and what we have been doing. And then, please, remember us. When things go back to ‘normal’ and people can again go to work, leave their houses, attend big concerts, meet up for dinner or drinks,—remember us.
Remember that for many of us, social distancing and self-quarantine might never really end.
Remember that for many of us, social distancing and self-quarantine might never really end. Remember what a pain it was to have groceries delivered, and offer to grab a few things for a disabled friend the next time you’re out shopping Remember how much fun you had in those Facebook Live dance classes, and email the instructor encouraging them to continue doing them after the shelter-in-place orders are lifted. When you’re at the art store ,grab some fun new supplies for a chronically ill family member because you have experienced first-hand how boring life at home can be.
When this quarantine ends for you, we will still be living it. As you move about the world freely, remember us. Remember that we are still here, we need you as allies, and we’d love to hang out with you via video chat and share coffee with you.