Working From Home Helps Keep My Chronic Fatigue Syndrome Under Control
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Jennifer Acker is the author of the novel The Limits of the World. She is working on a memoir about chronic illness and marriage. She is founder and Editor-in-Chief of The Common and teaches writing and editing at Amherst College.
With two Pfizer shots in my arm and a possible third on the horizon, I should be feeling renewed, eager to engage in the months to come. Instead, I’m scared, apprehensive. Because even if the world outside were perfectly safe, I don’t have a normal life to return to.
For 18 months, like much of the world’s computer-tethered class, I’ve worked entirely from home—able to nap when I’m tired and lay down on the floor when my neck and back spasm. Sometimes I can even host meetings back to back, knowing that I don’t have to walk across campus in between. I’ve attended more meetings, after-work readings and literary soirees during our year-plus of plague than I have in the previous five years because, if I need to, I can get horizontal and turn the video off without leaving the party.
The virtual space that has become a symbol of the distance between us has also been my shield. That’s because so many of the workarounds that mark me as disabled have become normalized at a time when “Zoom fatigue” is ubiquitous.
But my fatigue is not merely the result of long hours on the screen. It does not evaporate after a good night’s sleep or even a restful weekend. I have myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), which the CDC describes as a “serious, long-term illness that affects many body systems.” COVID-19 “long haulers” appear to develop an extremely similar disorder. One of the hallmarks is post-exertional malaise, which means that if I walk up and down the stairs too many times, or concentrate overlong on a difficult task, I could be exhausted and out of commission for the next several days, or even weeks.
I’m a lot better than when I first got sick five years ago, and this makes me one of the lucky ones, but I still have to monitor my activities carefully. Before COVID-19, this meant engineering meetings so that others came to me, and skipping any activity that was not a high priority. Even now, an important evening event means resting up before and after, and I can’t simply “push through” a string of busy days.
This past year, home bound like everyone else, my days have looked like yours. Sweatsuits and slippers, railing at a frozen screen, doomscrolling between emails, and lots of The Great British Baking Show. I haven’t needed to mentally map the shortest distance between two locations, or determine if a building has an elevator before deciding to enter it. I haven’t needed to ask, in advance, if there are seats in a concert hall, and if you can park close to the venue; or, at a conference, if there will be a fridge in the hotel room to store my medications. I don’t agonize over how I’m going to survive an industry party in a bar without chairs because many bars remain closed or operate with restrictions.
From the outside, there appears to be nothing strange about my life of rests and pauses, and this has been a balm. The cloak of normalcy.
But once my workspace and other common areas open up, and a semblance of normality attained, I’ll be disrobed. And the prospect of nakedness fills me with fear.
In many ways, America is once again on the move: wearing shoes with laces, maybe even heels, exuberantly throwing cocktail parties, traveling coast-to-coast. Meaning: I'm once again on the margins.
Of course I miss inviting friends and family to my house for dinner. I miss listening to live music and sitting so close to the stage during a play that you can see the spit flying from the actors’ mouths. But even without a pandemic, I’m no longer fit for a life unthinkingly in motion. A life in which being there is always required.
Life at home is reassuringly reliable—all my pills and shots in one place, a snack only as far as the fridge, a soft pillow ready to accept my migrainous head. Life out in the world is chaotic, full of unexpected disruption which, to a healthy person, might mean walking a quarter-mile to find a cab, or skipping a meal. To me, these are near impossibilities.
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To live a life out in the world, I need to carefully plan ahead. I do not look disabled—“You don’t look sick,” is a classic ME/CFS joke—so I must explicitly advocate for my needs. No one is going to offer a ride after seeing me sit and stand on apparently normal legs. But asking for help can be humiliating and exhausting. After one event at a literary festival, I was told by a well-meaning staffer that the golf cart that had ferried me and other authors to the auditorium was available only to disabled people for the return trip. “I am disabled,” I said. It was the first time I had said it out loud. I was filled with shame by what I could not do, what I had to rely on others to do for me. This past year has been blessedly free of such supplications. The only daily help I’ve needed is being reminded to unmute. I’m never the only one in a Zoom room with the video off, resting my eyes.
Ultimately, I want the vaccine to make the world healthy and safe. I want our lives to include regular human touch again, and for our neighborhood shops and restaurants to thrive. But when life in the slow lane comes to an end, mercifully, for many, I will have to make hard choices. I’ll have to leave the party early, or skip it altogether. I’ll have to explain my limitations, so that colleagues can accommodate me. People like me will again be disabled in the eyes of the world, unable to hide behind our screens.
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