'What I want are recovery narratives': CBC Radio host Gill Deacon on life with long COVID

Gill Deacon is the host of CBC Radio's Here & Now. She went on leave in December 2022. This piece is about her ongoing absence.

"How's work?"

The cashier is a former neighbour, someone I haven't run into in years. We make small talk through our masks at the checkout. "I'm on medical leave right now," I tell her. "I have long COVID."

Her eyes widen as panic takes over the top half of her face; she reflexively reaches to tighten her mask around her nose. 

As she steps back slightly it occurs to me that she doesn't know what long COVID is, that it isn't contagious. And who can blame her? Like so much about the virus that hijacked our sense of normal in 2020, we're still scrambling to learn and catch up. 

Research continues. Periodically, promising breakthroughs emerge — most recently, evidence of a lack of serotonin in many long COVID patients.

In the meantime, the roughly 1.4 million Canadians suffering through long COVID's otherwise mysterious punishments wonder whether they'll ever feel normal again. I am one of them.

Long COVID was the thing I feared the most throughout the pandemic. As reports began to emerge of a strangely long-lasting version of COVID-19 preying on once active, healthy people and reducing them to limp noodles of achy fatigue, I doubled my resolve to avoid it. 

The looming spectre of long COVID was the reason I diligently counted to 20 while washing my hands, why I kept updated on vaccinations and wore a face mask in every possible indoor space. 

A few days in bed with a nasty fever didn't scare me, but the thought of longer-term organ damage leaving me with some kind of debilitating, indefinite condition made me shudder. My biggest fear became my months-long reality. 

Two summers ago, my otherwise healthy heart began erratic pounding — atrial ectopic beats, the cardiologist said at the time — importunate misbehaviour at all hours of the day and night.

I soon developed other symptoms I initially mistook for a flu. But no fever, nor any other signature COVID symptom. By all measures, I was COVID-free.

Which is why, when I began to feel a peculiar salmagundi of symptoms, no one thought to look under the COVID rock for the key. Instead, I felt more and more like a hypochondriac with every visit to my family doctor. 

My sinuses hurt but my nose isn't stuffed up or runny.