Text reads: Children and young people with disability.

Navigating self-care with disability and chronic pain

landscape view in the foreground with a blue lake and mountains in the background.

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This blog was written by a CYDA Youth Council Member.

Self-care – we hear this term often. Whilst we probably all agree that it is ‘something important’, it is not necessarily as easy as it sounds. When one has to deal with chronic pain and disability in addition to the stress life has to ‘offer’, self-care may be a burdensome task to be put on a daily to-do list. 

Self-Care Needs Effort!

Before we even talk about it – let’s ask what self-care is. The way I see it, self-care is not just about taking breaks and relaxing on a couch while watching Netflix. It is about taking active measures to keep up your physical and/or mental health when they are going down. This act requires self-acknowledgement and self-responsibility by involving yourself into choices and controls contributory to your wellbeing, albeit it may not be your favourite chore to do in the midst of a deadline fight. 

As a disabled young person, I would emphasize that self-care is especially crucial for young people with disability and chronic illnesses, as we have to take into account the number of ‘spoons’ we have in a day. One spoon may have gone to taking medications, three spoons may have gone to working on that time-sensitive project, two spoons may have gone to hanging out with friends… With the limited energy we have, we may be more prone to physical and mental fatigue if we do not stop and recharge ourselves. 

Luckily, while there is no one single way of self-care that works for everyone, there are numerous ways to practice self-care that can be accessible, simple, and beneficial for improving chronic pain and stress. 

My Quick Tips on Self-Care

As cliché as it may be, the first thing that helped me through chronic pain was creating a ‘pain diary’. I journaled down the physical pain level and mental load that I went through each day or week on my phone’s notebook to keep track of my condition. Sometimes with a long paragraph of text, sometimes with only a picture that described my thoughts. It helped me because it allowed me to feel that I am in control of my own condition and mind to a certain degree, and to identify potential triggers for the episodes of pain.

Treating myself with healthy meals and exercises was also a form of self-care that I tried to do. It was easy for my chronically fatigued body to say ‘hey, let’s just stay at home today and get some two-minute noodles.’ But on days when I felt better, I let myself go for a jog, enjoy some sunshine, and have a nice bowl of wholefood. It was certainly a form of self-care for me as I was a busy full-time student immersed into piles of unfinished work.

Last but not least, I got myself surrounded with a network of support. Friends that I could trust, support groups that I could talk to without feeling ashamed. These were the people that motivated me to care for myself and reminded me that I was not alone on this personal journey.