By: Michelle Young, Copy Editor
Writing this piece from my desk, a wrist brace hugs my forearm. My elbows are at a 90° angle, and I’m trying to remember to stretch my fingers every once in a while. Among many others, these are habits I’ve integrated into my daily life to ease chronic pain and take care of my well-being.
I came to understand my disability through an extremely long and exhausting journey. Once I accepted disability as a part of my identity, I’ve been much kinder to myself. It forced me to reframe my expectations and habits, and I have never been more grateful to have a word that accurately describes my experiences.
The first time I realized I had an issue with my hands was when I brought an ice pack to a college English exam. For weeks before that, I had ignored flare-ups and it was now painful to write my final essays — I messily scrawled out the paragraphs on the page and ran out of time before I could finish. Practising piano was also a disaster — I spent around 15 minutes on the piano bench but didn’t progress at all because my wrists would quickly feel swollen. I quit shortly after to heal, and that was nearly five years ago.
The doctor I saw gave me a wrist brace which provided temporary relief. I wore it when I was in pain, and once the pain went away I took it off. It was like this for years and I couldn’t help but start to wonder when I was going to get better. I didn’t get better, and I only got worse.
Since my doctor only offered to provide pain injections, I tried to search for more sustainable treatment. I eventually went to physiotherapy when I could barely use my hands anymore. Everything was achey: brushing my teeth, washing my hair, and doing dishes. My hands would shake if I tried to pluck my eyebrows. My physiotherapist told me I’d relied on my brace so much over the past few years that I’d lost most of the strength in my wrist and fingers. Not only that, but I was also using my hands beyond their capacity.
I diligently did my physio exercises and tried to build the strength back in my hands with rubber bands. Placing the bands between my thumb and index finger, I stretched them out as far as I could as a form of resistance training. But I always fell back into the same problems when I tried to go back to my previous lifestyle. Society, in general, is not accommodating towards those with disabilities and I felt pressured to return to my “normal” lifestyle.
One day, I stumbled upon something called spoon theory which uses spoons as a metaphor for energy. The idea is to start with 12 spoons, and remove one “every time an activity like taking a shower or getting dressed was mentioned.” The theory shows that basic daily tasks can require much more effort from those with disabilities.
When I read about this, something clicked inside me. All my daily habits were laid out in a way I felt I could explain to others. I can’t clean on the same day I have a heavy workload: I need to spread out my hand use throughout the day and week.
My focus was always on getting better and getting back to where I was before. The moment I was feeling good about my condition, I hunkered down and got back to my old habits. What helped me the most, though, was severely shifting the way I thought about myself, my actions, and my definition of productivity.
Once I began to realize and accept that I have a disability — a condition that can restrict the way I live — I was able to acknowledge I needed rest. Not only rest, but I needed my lifestyle to be sustainable for my body.
I’ve been going to physiotherapy for over a year now. I see a professional who specialises in hand therapy. She loosens the tightness in my wrist and forearm and goes over how to reduce my pain. She also explains why I’m more high-risk — my small frame and hyper-flexibility make me more prone to these issues than others. Switching my dominant hand from right to left just means the same issues will arise there, too.
Understanding this is just a part of me and loving myself regardless of whether I feel better has been an act of care. I’m restricted in the things I do, not because I’m inadequate, but because I’m disabled. Describing myself as such has helped me explain this to others and accept that, as I’m taking care of myself, I need more time to rest.
Constant reminders asking me when I’m getting better and being told that I shouldn’t “give up” are deep misunderstandings of chronic pain. Rather than beating myself up for not being able to do as much as I could before, recognizing my disability has allowed me to shamelessly ask for help from others. For those who’ve helped me chop veggies, carry pots, and open bottles without complaining, I am always grateful.
Regardless of whether I have chronic pain over the next few years or for the rest of my life, my worth isn’t tied to being able to perform tasks as efficiently as possible. Of course, I miss many hobbies like piano, painting, and scrapbooking — and will gladly take them up again if I have the capacity to do so. Ultimately, however, learning about my disability and how to manage it has been an exercise in self-love.