This First Person column is written by Melinda Maldonado who is recovering from long COVID. For more information about CBC’s First Person stories, please see the FAQ.
When my dog looked at me with pleading eyes and a whine, I reluctantly grabbed her leash and made it downstairs. I knew I was too exhausted to walk Estelle long enough to tire her out but a grassy fenced area in my condo complex caught my eye on that cold February day. I looked at my dog and we agreed: to hell with it.
Soon it was my dog leaping into the air and me expending zero energy in one spot in an endless loop of fetch. It was glorious until a neighbour hollered at me to get out.
That’s when I started oversharing with strangers: “I had COVID and I’m really struggling with fatigue right now.”
My neighbour was more interested in bylaw enforcement than sympathy, but that didn’t deter me from giving it a go with others. Since then, I’ve had a lot of practice because three months after a breakthrough COVID infection that left me bedridden for weeks, I’m still managing debilitating fatigue.
Today, everyone knows someone who has been “omicroned” but there is still so much stigma associated with it. Contact tracing is no longer being done, but when I got COVID, everyone wanted to know how I got it.
Before blurting things out to neighbours, I self-flagellated my way through a self-audit of where I’d been. Since December, my husband and I hunkered down after a public health call spooked us with news of a possible exposure. We isolated as much as condo-dwellers can with a dog, which means frequent elevator rides.
My audit results: no moral slip-ups. Shame is so 2020. I texted friends a photo of the two lines I’d achieved on a rapid antigen test: “FML.”
But the proof that stigma is alive is in how we talk about it. My social feeds have been full of COVID stories and most include one detail: vaccination status. It’s OK to announce you had it if you’re fully vaccinated. It’s OK to post photos of in-person gatherings if you confirm that everyone did rapid tests. Flouting public health guidelines? Not me.
I get it. Mentioning that I’m triple-vaccinated in the same breath as revealing I had COVID feels important. Obviously, go get vaccinated as vaccines can help reduce the risk of getting long COVID.
But I’m telling you that getting COVID wasn’t my personal failure to prevent it. I didn’t throw caution to the wind, cavorting with the unmasked at raucous parties.
Stigma crops up in the way people rationalize away potential cases of COVID, which have been harder to confirm since Ontario changed the rules about who qualifies for a PCR test. Cough and runny nose? Allergies, a sinus infection or as one cousin said, “I still maintain it was a winter cold!”
But that stigma has also changed my mindset to be more vocal about my needs.
A few weeks ago, I had a bad day. Physical, mental or emotional exertion drains energy, and I had spent my day’s rations on cognitive load at work. I was trying to stand up from sitting on the floor when my arms gave out. I looked at my husband and burst into tears. “It’s like being in prison,” he said. “Eventually you’ll get out.”
Since then I’ve hired a dog walker and gone on sick leave, with plans to gradually return to work when I’m ready.
But that’s not the only thing that’s changed. The pandemic had already made me more assertive, sparking conversations about boundaries that before I’d reserved for the world of safe sex.
“Do you do hugs? Where are you at with gatherings? Are you comfortable with dining indoors?”
And somewhere over the last two years that ramped up something fierce. I went from quietly seething to the woman who would firmly tell a neighbour to stay the hell out of the elevator if they weren’t wearing a mask.
Today, I speak up to shatter the stigma of being marked by long COVID.
In a society that rewards ambition, people with long COVID can face stigma from family, friends or colleagues who think you’re just being lazy, have undiagnosed depression or simply need a vacation.
Anticipating judgement, the new me acts like a crisis communications pro and gets out in front of the bad news. So I tell people that I have long COVID, and I’m increasingly opening up about how awful it feels to be in the middle of an unexpected, unknown experience, or the real reason I might need to peace out at short notice to rest.
The pressure ramps up for me because I’m normally a boisterous person with big energy. Even while suffering today, I look healthy. “A muted you still appears more energetic than most people on a good day,” a colleague said.
But fatigue is an invisible ailment.
Like Cinderella, the clock starts ticking on the time I have for any given activity. I can hold my own for one work-from-home meeting at a time, but no one sees that I’m resting before and after to pace myself, or the crash that comes upon overexertion.
Recently, I felt well enough to eat out for my dad’s birthday. As main course plates cleared and coffees arrived, I announced that Cinderella’s clock was ticking. When I took my leave, I knew I’d done a good day’s work of shattering stigma, but more importantly that I wasn’t alone.
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