This first-person column is written by Melinda Maldonado who is recovering from a long COVID. For more information on CBC’s First Person Stories, please see frequently asked questions.
When my dog looked at me with pleading eyes and a whine, I reluctantly grabbed his leash and got off. I knew I was too exhausted to walk Estelle around long enough to tire her out, but a fenced-in, grassy area in my condo complex caught my eye on this cold February day. I looked at my dog and we agreed: to hell with it.
Soon it was my dog jumping through the air and me spending no energy in the same spot in an endless loop of fetch. It was glorious until a neighbor yelled at me to get out.
That’s when I started sharing too much with strangers: “I’ve had COVID and I’m really battling fatigue right now.”
My neighbor was more interested in enforcing the rules than sympathy, but that didn’t deter me from trying with others. Since then, I’ve had plenty of practice because three months after a breakthrough COVID infection that left me bedridden for weeks, I’m still dealing with debilitating fatigue.
Today, everyone knows someone who has been “omicronized”, but there is still so much stigma associated with it. Contact tracing is no longer done, but when I got COVID, everyone wanted to know how I got it.
Before letting things slip to the neighbors, I self-flagellated through a self-assessment of where I had been. Since December, my husband and I have been hunkered down after a public health call spooked us with news of possible exposure. We isolated ourselves as much as possible with a dog, which meant frequent elevator rides.
My audit results: no moral slippage. Shame is so 2020. I sent friends a picture of the two lines I got on a rapid antigen test: “FML”.
But the proof that stigma is alive is in the way we talk about it. My social feeds have been full of COVID stories and most include one detail: vaccination status. You can announce that you have had it if you are fully vaccinated. You can post photos of in-person gatherings if you confirm everyone has taken rapid tests. Disregard public health guidelines? Not me.
I understand. Mentioning that I am triple vaccinated at the same time as revealing that I had COVID seems important. Of course, go and get vaccinated because vaccines can help reduce the risk of becoming long COVID.
But I tell you that contracting COVID was not my personal failure to prevent it. I didn’t throw caution to the wind, cavorting with the unmasked on noisy parties.
The stigma appears in the way people rationalize potential COVID cases, which have been harder to confirm since Ontario changed rules about who is eligible for a PCR test. Cough and runny nose? Allergies, a sinus infection, or, as one cousin put it, “I still maintain it was a winter cold!”
But this stigma also changed my mindset to express my needs more.
A few weeks ago I had a bad day. Physical, mental or emotional exertion drains energy, and I had spent my daily rations on cognitive load at work. I was trying to get 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. “You’ll get out eventually.”
I’ve since hired a dog walker and gone on sick leave, intending to gradually return to work when I’m ready.
But that’s not the only thing that has changed. The pandemic had already made me more assertive, sparking conversations about the boundaries I had previously reserved in the world of safe sex.
“Are you cuddling? Where are you at with the gatherings? Are you comfortable with indoor dining? »
And somewhere in the last two years, it accelerated something fierce. I went from bubbling quietly to the woman who would firmly tell a neighbor to stay off the elevator if they weren’t wearing a mask.
Today I speak out to break the stigma of being scarred by long COVID.
In a society that rewards ambition, people with long-term COVID may be stigmatized by family, friends, or co-workers who think you’re just lazy, have undiagnosed depression, or just need holidays.
Anticipating judgment, the new me acts like a crisis communication pro and comes out on top with bad news. So I tell people I have long COVID, and I open up more and more about the horror of being in the middle of an unexpected and unknown experience, or the real reason why I might need to calm down in the short term to rest.
The pressure is building for me because I’m normally a loud person with high energy. Even in pain today, I look healthy. “A muted you always seems more energized than most people on a good day,” a colleague said.
But fatigue is an invisible evil.
Like Cinderella, the clock starts counting down how much time I have for a given activity. I can handle a work from home meeting on my own at a time, but no one sees me resting before and after for pace myselfor the accident that occurs during overwork.
Recently, I felt good enough to eat out for my dad’s birthday. As the main course plates cleared and the coffees arrived, I announced that Cinderella’s clock was ticking. When I left, I knew I had done a good day’s work breaking the stigma, but more importantly, I was not alone.
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