By Stephanie White

Who Am I If I Can't Work? Finding My Identity Amidst Long Covid

After earning my PhD in Composition and Rhetoric, I was thrilled to snag a teaching position in an English department at a large research university an hour from my family. But after two years, it became clear that the department and role weren’t the right match for me. Despite some twists and turns, I eventually landed a position in the university’s Writing Center. It was an excellent fit: I got to work with collaborative, enthusiastic colleagues; lead a team of undergraduate and graduate peer tutors (which is basically like teaching, but without the grading); consult with faculty on integrating writing tutors into their classes; and do research in my field. At long last, I had found a fulfilling job, and still near my family. I had arrived. Or so I thought.

Like so many people over the last few years, I caught Covid. Unlike as many people, my symptoms lingered, and I developed Long Covid. Current estimates are that up to one third of Covid sufferers will develop “long-haul” or “post-Covid” symptoms. We may experience severe pain, debilitating breathing issues, baffling heart rate irregularities, or over 200 other symptoms. And while post-viral conditions aren’t new, the magnitude and variability of Long Covid is unprecedented, with women affected substantially more than men.

A few weeks after my initial, intense flu-like symptoms had me on the couch for a week, I still couldn’t shake the headaches, brain fog, and fatigue. I took a few days’ sick leave, then tried to work part-days, thinking the symptoms would lift. After six weeks of trying to work part-time with no improvement, the Occupational Health unit at my institution suggested I take two weeks’ full sick leave to try to kick my symptoms for good. I was rattled — I couldn’t fathom being away from work for two whole weeks and had no idea how I’d fill my days — but I also knew that I wasn’t getting better and needed the rest.

Within a week, it was clear how I’d fill my days: with sleep. Then TV — calm, simple, slow-moving TV. Lots of baking shows. Then more sleep. Once I stopped trying to work, I saw how badly I’d been holding on, that I had been just barely keeping my head above water while accidentally letting work things slide. Then two weeks turned into six, and six weeks turned into three months. I couldn’t fathom it — I hadn’t gone that long without working since I was twelve years old and started babysitting. But it was clear that I wasn’t getting better.

My fatigue was such that I could barely walk around the block. The headaches came daily, and were severe. But the worst part was my cognitive function. My brain fog was so bad that I couldn’t make sense of any nonfiction longer than a paragraph. It was terrifying, mostly because I hadn’t realized how much my brain and its function were central to my identity: without my brain, who was I?

After a few months, I was able to get into a virtual Long Covid physiotherapy program. I was put on bed rest (my poor partner!). Our church and neighbours brought us meals, and friends and family from further away sent us cash for takeout (isn’t takeout cash just the best gift you can give a sick person these days?). Two weeks in, I began to slowly reintroduce activity under the guidance of my physiotherapist, focusing on building my tolerance for physical movement. I started to take longer, though slow, walks. Ten minutes. Eventually twenty.

Painstakingly, with one step back and two steps forward, I’m building my tolerance for life again. It’s been almost 18 months now since I caught Covid and went off work. My headaches are less frequent and much less severe. My fatigue is no longer consistently debilitating. And my brain fog is less intense. But I’m far from well. I’m not able to read any complex nonfiction, let alone academic prose — the words just don’t hold together in my brain. I can’t plan ahead or think about the big picture. I’ve only just begun writing again in the last few months. This is the first complete piece of writing I’ve put together since I got sick. Besides, I’m constantly overdoing it, then crashing. I think it’s pathological, this conviction that if I work harder, or think harder, I’ll be able to solve this illness. But I can’t. The harder I work, the harder I think, the sicker I get. The only way through this is to stop trying.

At this point, the guidelines on my university’s website (as far as I can understand them) state that my job, which has been filled as a short-term contract, will soon need to be filled permanently if I’m not able to return. And then this hard-won job that I love will no longer be mine. At the same time, I’m panicked about what I’ll do once I’m able to work, because I may not be able to return to the cognitive level I was at. I’m afraid because I worked hard to achieve a career I love, and now I may not be fit for it anymore, even once I can sustain some kind of daily work. Like an injured athlete who can’t return to their sport, I may need to find an entirely new career for myself.

I watch my partner (who works full-time) make dinner, do the dishes, and read to the kids. He often takes them up to bed (even if it’s my night to do so) because I’m too exhausted. And I think: I don’t know who I am. I used to do those things, and now I can’t. I used to invite friends over for dinner, and now I can’t. I used to teach Sunday School and write liturgies for church, and now I can’t. I used to work — to put so much of myself into my career — and now I can’t.

As I lay on the couch the other day looking out the open window at the summer sunshine, I realized that all my life I’d believed I was created for the purpose of this earth, to do things on this earth. But since I can’t do much of anything anymore, then I must have been created for something else. So what if it’s the other way around? What if the earth was created for me? It comes down to this: either I am alive for God’s pleasure, pleasing God purely by existing, or else my existence is now pointless. To keep on living, I need to believe the former.


Photo by Travel Photographer on StockSnap

About the Author

Stephanie White is on leave from her position as the Undergraduate Programs Manager at the University of Waterloo’s Writing and Communication Centre in Waterloo, Ontario. She and her husband Andrew have two amazing kids and very helpful family and friends.

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