Self-Care Looks Different For Disabled People
As I sit here, I think back to my life 6 years ago, when I was 14. I think about the hours I would spend laughing with my friends in coffee shops, competing in dance competitions, and taking long runs through the park. I think about the adventures we would go on to theme parks and different cities. I think about my body and how kind it was to me.
As I sit here, now at the age of 20, having been diagnosed with multiple chronic illnesses in the last few years, I think about how much I miss the 14-year-old me. I think about how I took my health for granted.
Yesterday my mum and my nan left after staying with me for the night. I knew the time they spent with me would be exhausting so I took precautions to prepare myself. When they arrived I was already deep in a gastritis flare-up, so I did everything in my power to take care of my body and avoid an even worse flare-up. That wasn’t enough.
As I sit and listen to my family moan about one thing or another, all I could think about was the pain I could feel in my stomach. I hated that despite the multiple steps I had taken to ensure that it would be a pain-free day, I still had no control over what was happening inside of me.
I think about what self-care meant to the 14-year-old me: face masks, long bubble baths, movie nights, and days off from school.
I think about what self-care means for me now: taking my medication on time, minimal exertion, bringing ear defenders and my walking stick everywhere, going to bed before 8 pm and not going out for 2 days in a row.
It took me a long time to accept that self-care was not a limited term. For a long time, I thought it meant spa days and trips to the beach. But now I know that self-care is as deeply personal and unique to everyone.
The road to self-care also involved self-awareness, and in particular, being aware of what my body wanted and needed. At times it meant having to say no and not feel guilty about it. It meant having to cancel brunch plans last minute and ask my teachers for extensions to my assessments.
Most importantly, it meant having to put myself first.
But it took me a long time to understand this, and I still have a long way to go. There are days I wish my body would cooperate and days I push myself to be like everyone. But I also know that I, and all the other disabled people, are not like everyone else. For us, the smallest achievements are huge.
Understandably, this wasn’t something I was able to figure out on my own. Being diagnosed with a chronic illness can be lonely and it took me a while to find a community who understood firsthand what I was going through. It was through these communities that I began to understand that advocacy was also an important part of my self-care journey.
As I entered a relationship and started playing a more active role in fighting for health equality, I also realised that self-care could be collaborative as well as individual.
So of course, it’s inevitable that our version of self-care may not necessarily fit into the ‘norm’ and there is no shame in that. Author and chronic illness warrior, Carmen Ambrosio once wrote, “If opening your eyes, or getting out of bed, or holding a spoon, or combing your hair is the daunting Mount Everest you climb today, that is okay.”