Let’s be honest: long COVID is a beast. We were unprepared for this pandemic. Illness and disability communities saw this coming, but medical and research communities have not listened. We haven’t learned from pre-pandemic post infectious illnesses despite their existence for decades upon decades (?forever). For example, Myalgic Encephalomyelitis is the lowest funded with respect to disease burden, as this study found, with disease burden being “double that of HIV/AIDS” and more than double that of MS. In fact, NIH funding would have to increase roughly 14-fold to correspond with disease burden! So, as evidence-informed rehab professionals and healthcare workers how can we support people living with illnesses historically understudied?

If you have questions about Long COVID, you’re not alone. Our leaders and media in Canada have largely been silent on the issue, but Long COVID is not rare and it’s important to be informed. For anyone looking to learn more, including health care professionals and those newly living with illness, this post is a peek into the world of post infectious illness. Here, I share my answers to Long COVID FAQs and links to helpful external resources. I hope some of the knowledge and experience I’ve gained over the past year can help you on your way.

Dear so and so, We’ve never done this before. We’re not supposed to know how to do this illness thing. This will take learning and changing and those things aren’t always easy. We’ll have to keep bumbling along and making mistakes as we go. We’ll have to remember to reflect, unlearn, and make our needs known. And we will need to learn about ableism. So, in the spirit of reflective bumbling, I need to tell you an important, hard truth: I’m tired of answering “How are you feeling?”

I recently wrote a piece for Long COVID Physio blog about what I’ve learned so far on becoming a responsible and effective advocate. Check it out!

Prologue You feel your blood coursing through your veins. Your heart is beating out of your chest. Your body flinches as it resists the millions of synaptic impulses commanding you to run, to fight, to do something – ANYTHING. Your autonomic nervous system is on red alert. You’re riding the runaway freight train of an adrenaline surge – a common symptom for those with Long COVID and ME/CFS. This tale is true, at least in part. Beware the truth, ye of faint heart.

The early weeks and months of acute COVID-19 infection that became Long COVID were full of unknowns, fears and struggle; but also gratitude, simple joys and pockets of progress. I’ll let excerpts from my journal do the talking. January 14, 2021 – My daily life for months has been: go to work, come home. I do nothing else. I’ve been playing it safe as COVID numbers increase. I didn’t want to bring illness home from the hospital. Then yesterday, I tested positive. What a surreal experience. That thing we’ve been avoiding for months is in my home – in my body. I felt the fear. I felt the guilt. Then…

Nine months ago, I opened my eyes and noticed the first hint of morning light escaping around the edge of the blackout curtain. I shivered as my naked toes stretched beyond the duvet and I sighed to myself, “Another day; another dollar.” My workday included the usual chaos – a blend of laughter, heart-ache, quick decisions and adapting to the flux that is inpatient care. I scurried from office to office, making plans with therapists for the patients on my Off-Service Neuro caseload. I clocked thousands of steps as I busted my butt across the huge hospital site to meet those in need of a Neuro-Rehab eye. The last visit…

One of my favourite pastimes as a child was make-believe play. I dreamt up stories upon stories of worlds, plot lines and characters. So, with three floors of rooms swinging out into a blank canvas before me, my toy Lego mansion was a go-to medium for imagination. I could spend hours prone on the floor with that plastic house of opportunity in front of me.

Here is your call to action: JUST GO FOR IT