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Chronic Illness, Access & Non-Productivity During COVID-19

Like many around the world at the moment, I have been struggling with both my physical and mental health.

In early March, shortly before Canada and many other countries seriously implemented social distancing measures against COVID-19, I lost consciousness twice while I was at home alone. The impact of falling and hitting my head resulted in a mild traumatic brain injury or a concussion. I have been recovering at a snail’s pace (I am writing this in short 15-minute spurts over several days). We haven’t been able to get any answers about why I lost consciousness in the first place as non-urgent care has been put on hold.

Additionally, I currently live alone in downtown Toronto in an apartment building several stories up in the air with no outdoor space and tiny operable windows. The fear of my recent experience still lingers while I navigate the basics of showering and microwaving. I have been avoiding screen time, noise and cognitive overload as these worsen my concussion symptoms. This confluence of events, both personal and global, have created a perfect storm for negatively impacting my mental health. I know that I am not alone in this. There are many others who are also navigating chronic health issues alongside fears of what it would mean to get COVID-19, how to safely access necessary resources like groceries and prescriptions and the serious financial implications of this pandemic.

People living with chronic health issues and disabilities have had to navigate access to resources and accommodations every day prior to this pandemic. And unfortunately, some of those stop-gaps that people in this community have relied on have now been overrun – to the extent that they can no longer access those same essential supports.  This pandemic truly has highlighted the inequities in our systems. I have purchased online groceries in the past out of sheer necessity due to chronic pain and fatigue. But in a time of COVID-19, when I have been told to avoid grocery stores and my pharmacy, it took me three weeks of refreshing my browser to finally land a grocery delivery two weeks from now.

It has been wonderful to see disability and crip folks, activists and scholars alike share their tips for survival in the spirit of mutual aid and support. It is even more poignant to collectively acknowledge the irony of how now certain issues are being addressed because the dominant group needs attending to.

I have been cooped up in my apartment for several weeks and access to nature, green space or indeed even adequate sidewalk is limited where I live in Toronto. While I recover from my concussion, it has not been possible to walk too far. I am not allowed to bike as my balance is still questionable. However lonely I might feel, I am grateful that I have housing and space to recover in. This is not my first concussion and recovery from a brain injury is an enormous exercise in trusting an excruciatingly slow process.

Over the last week or so, I have settled a bit more into accepting what my current reality is. Many of us are learning to do this out of necessity. It is from this perspective that I offer some thoughts on what has helped me with nurturing my mental health at this time.

  1. Radical acceptance: I’ve been listening to an audiobook on radical acceptance by Tara Brach, Ph.D. and spending much more time just accepting myself, my situation and this moment. In any case, it’s exhausting attempting to fight what is.
  2. Asking for and receiving help graciously: I’m still learning to do this. I am so grateful to my support network who have lovingly brought me food, groceries, a roll of toilet paper, and provided support from afar, from calls to thoughtful messages, and check-ins with me to make sure that I am alright. I have spoken about this before and many within the disability community already knew this well long before COVID-19 – we cannot survive or hope to thrive on our own.
  3. Maintain some structure in our days: One of the things that have helped me feel better is going back to basics and having some sort of structure to my day. Sticking to set bedtimes and brushing my teeth. Basic hygiene practices are self-care and expressions of self-love and not to be minimized especially when chronically ill. I have recalibrated my relationship with doing the dishes; I do them right after I use them (as much as possible) and instead of resenting them, I try to remember to be grateful that I can stand for long enough to do them. Sometimes, I listen to a podcast as well, it helps.
  4. Embracing kindness  towards ourselves: I am guilty of being unkind and impatient with myself. Noticing this internal dialogue helps me catch myself and practice being more gentle and kind to myself. It helps me meet my body and mind where I’m at.
  5. Recognizing that we do not have to produce: Our bodies are not machines. There has been so much written about taking advantage of this time and being productive and this narrative can be harmful. If you do not learn a new language, write a book, create a new website or host a webinar during this time, that is completely okay.
  6. Find/create small moments of joy: I have begun to really appreciate those small moments of comfort; a warm drink, stretching, a breeze through my windows. I am learning to actively create moments of joy and entertain myself. Without relying on movies or tv shows to numb myself. I’m reminded of myself as a child when I could entertain myself in my room for ages with whatever was available.

I’ve known for a while that I was burnt out and that too much was going on, and while I was taking steps to pare down my commitments, I’ve been forced to slow down in a way I couldn’t have anticipated. There is wisdom in slowing down, trusting our bodies and minds and first and foremost, taking care of ourselves and each other.

Other articles and resources on this topic: 

A Letter to My Abled Friends

Know Your Rights Guide to Surviving COVID-19 Triage Protocols

Disability, Creativity, and Care in the Time of COVID-19 by Aislinn Thomas

Crips and COVID in Canada