Finding Quality of Life in Chronic Illness

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ife with a chronic illness can sometimes feel like work/sleep/clean – repeat indefinitely. It's sometimes as if all the fun is sucked out of life because of fatigue and limited energy, but what if I told you doing things just because they make you happy is allowed too? What if I told you, it’s not only possible, it can actually be beneficial to step away from the cleaning, let the house get a little messier and spend some time on yourself instead?

Text reads, 'it often feels like once you become sick, you are no longer allowed to have the nice things in life. Spending time with friends, taking a day off just because you need it or choosing to do something for yourself rather than cleaning when you have some energy.' below is a cartoon boy holding an ice cream saying, 'but has anyone told you, you deserve quality of life too?'

Why we always seem to prioritise the stuff we feel we should do over things that bring us joy

A purple banner with pink text that says 'bring back the joy' underneath is a pink shop now button. To the right hand side there is a pair of space compression socks and in a circle around them the text says 'compression socks do't have to be boring'

Most of this comes down to expectations: either other people’s or our own. We have set ideas of what we should and shouldn’t be doing and rarely do we stop and ask ourselves ‘is this really necessary?’ Unfortunately, some of this is due to the issue of ‘usable hours’, which I’ve covered in a previous newsletter and blog. People who are chronically ill often have far fewer usable hours – but other people don’t always understand this and we feel the expectation to ‘keep up’ with our non-disabled friends and family.

However, letting housework and social commitments slide so you can prioritise your wellbeing and improve your quality of life is an essential part of managing chronic conditions. Would the house fall apart if the cleaning is left one more day? Would your family really hate you forever if you said no to that BBQ? Almost certainly the answer to both of these is ‘no’, which is why dismantling habits that reduce your quality of life is so important.

Think about the bigger picture: would you sleep better tonight if you made time for a bath? Would you feel better if you took an hour to bake your favourite cake? Making time to do the things we love is an important part of both our immediate and long-term self-care, and it really can be as simple as grabbing half an hour to watch your favourite TV show and leaving the washing up until the morning instead.

Learning to put yourself first

At first, it can feel bad putting yourself first. You’ve spent years thinking that doing this is selfish. But putting yourself first shouldn’t automatically be considered a bad thing, and the more you do it, the easier it will become. For the chronically ill community, putting yourself first is something we’re not always encouraged to do, but it can greatly improve our quality of life and should be supported by our loved ones.

putting yourself first shouldn’t automatically be considered a bad thing, and the more you do it, the easier it will become.

Start with something small and build on it. Say ‘no’ to one thing and see how it goes and when the world doesn’t fall apart, do it again. With practise you’ll soon be able to identify when you need to prioritise yourself, and adjust, delay or outright cancel some of your other life commitments (socialising, work, housework, grocery shopping) to best improve your quality of life.

As with most things with chronic illness, it’s about finding what works for each person, but you won’t know until you try.

So, what’s one step you are going to do to start building quality of life?