Loaded language: As a writer with long COVID, even good words have bad days

This First Person article is the experience of Edmonton communicator Tara Madden, who had COVID-19 in December and continues to deal with symptoms. For more information about CBC's First Person stories, please see the FAQ.

Uncomfortable. A word I've typed more times than I can count. But suddenly I can't remember how to spell it. My brain can't sort out where the m and the n go. It takes me five minutes to type one word. This is post-COVID brain fog — one of many things I've had to learn to live with.

Like many, I contracted COVID-19 in December. Having successfully avoided it for almost two years, I fell to Omicron. What was widely described as "mild" and "just a cold" was not the case for me. I was laid up for two weeks with extreme fatigue, body aches, headaches, a throat that felt like it was lined with razor blades, and shortness of breath that made many simple activities a challenge. 

While I was sicker than many around me, I wasn't overly worried. I figured it just needed to run its course. It was dark and brutally cold outside — a few extra days in bed wasn't that much of a hardship.

But I didn't get significantly better. Weeks passed and though I was out of isolation and no longer infectious, the symptoms lingered. And the conversation with my health-care providers changed to long COVID. 

Struggling to find the right words

Now I have good days and not-so-good ones. The fatigue is the worst. I am working from home indefinitely so I can rest when I need. I still suffer from shortness of breath. My joints hurt when I get overtired. My voice is hoarse, raspy and some days little more than a whisper. I am currently waiting on a referral to an ENT to (hopefully) identify some solutions for me.

It's affecting my work — colleagues cover for me in presentations and my in-the-moment speaking and thinking aren't always up to par — and it's affecting my family. My kids are getting used to me being sick, to scheduling activities around my energy levels. This hurts; I don't want this for them, for us.

I have good people around me. They care. They want me to be OK. And they're struggling to find the right words. 

"Stay positive," they say.  "Focus on the good." Or, "Things will get better."

Those words don't help me. 

Perpetual positivity isn't authentic and it can be exhausting. It can feel dismissive. I need space to celebrate my good days and space to vent about the bad. To rant, even if it's raspy and hard to hear. I need to be heard and acknowledged. 

As I write this, I'm having a rough week. I can't find the energy to find the words to respond to messages from friends. I worry I'm letting them down. 

I'd love nothing more than to move on

The long COVID assessment has been a blow. When will I get better? Will I get better? Why me? It feels lonely sometimes. 

It's also made me sensitive to words.

Things like talk of being "over the pandemic." Of it being "time to move on." 

I'm over it, too. I'd love nothing more than to move on. But that's not an option for me. Not yet. The pandemic may be ending but COVID hasn't let me go. 

And I'm not alone. Statistics suggest between 10 and 25 per cent of COVID-19 patients have or will develop long COVID. All of us need support. We need to be OK to not be OK. 

For those who are "over it all," remember those of us who aren't. We're worthy of compassion, of empathy, of consideration. Of words of comfort that don't leave us feeling … uncomfortable.

If you have a compelling personal story on this topic or others, the CBC First Person team wants to hear from you. Here's more info on how to pitch.