There is an unwritten rule book narrated by society, of milestones we are supposedly meant to reach as we move through life. It governs the typical achievements around careers and relationships, which everyone is pressured to reach within certain timeframes. While the pressure around these milestones isn’t good for anyone, it is particularly problematic for people with chronic illness. Reaching career or life goals, such as having a full-time job, buying a house or starting a family are all things that can be difficult or impossible for us to do in the way or at the pace of those who don’t live with a disability can.
Of course, there is nothing wrong with someone wanting these things and many disabled and chronically ill people do achieve them. But it is important we remember these are not what defines a person’s worth. People are so much more than the benchmarks society judges us by. Our interests, kindness, perseverance and strength are the kind of things that should define who we are. We’re not lesser simply because we can’t always keep up with the demanding schedule that society expects.
Once, when talking about what we were going to apply for after finishing University, a friend suggested I apply for a particular graduate program they were applying to. It was a good job apparently with a decent salary and training opportunities. It was also only available full time, 9am to 5pm every day and in a corporate environment. It wouldn’t have worked for my body even during a good patch and definitely not during a bad one. But even though they knew I had chronic health issues, and in the types of ‘progressive’ circles where you would expect acceptance of a less traditional path, they simply couldn’t see why it wasn’t going to be a workable option. And whether I wanted it to be or not.
It’s not the only time I’ve heard similar remarks and, there have been times during an improvement in symptoms, I’ve had to remind myself that I still don’t need to try and ‘catch up’ to others. There are always moments when I think perhaps, I should be doing more, but life is not a race.
There is nothing wrong with doing things slowly. Life’s magical moments aren’t only found in big achievements but also the small everyday things we experience. Things like warm sunshine on a cool day, doing the things we love when we can. Whether it’s painting, reading a good book and spending time with people we care about.
One thing I’m continuously re-learning throughout my own experience, is to live with chronic illness often means putting aside the life you thought you would have, that society wants you to have and finding an imperfect new one. This takes a degree of strength and it’s by no means something I’m perfect at. But these days, I frequently find I’m telling myself it’s okay when I make a choice that’s the best for me. Of course, sometimes I still push myself when I probably shouldn’t.
Though, at least now I try to only overdo things when it’s something that’s important to me, not important to the arbitrary society we live in. It doesn’t always work out this way, but you gradually get the hang of it. You learn to sit with the sense of disappointment and frustration that your body must rest and can’t just do more. To value all the little things you achieve, more than the opportunities you miss.
There are still multiple times I wish I could keep up with the pace that everyone else seems to be able to live. But I’m also more content to try and do things in a way that works for me and my body – even if it doesn’t fit other people’s timelines. I create art when I can and share it with the world when I’m able to. I focus on finding jobs that are flexible and supportive and I’m starting to use creativity to share my experiences. Gradually, I am redefining what success is and valuing the achievements that matter to me. Living with chronic illness in an ableist society is far from easy to begin with and achieving whatever we can within it is no small thing.
If enough people, whether chronically ill or not, allow themselves to create a life that works best for them and let others do the same, society might start to realise that its so-called milestones are not the be all and end all. It is possible and okay to live a meaningful, enjoyable and wonderfully imperfect life, at your own pace and allowing yourself to do so, in a world obsessed with structured success, is actually a pretty bold choice.
Amelia s a Naarm/ Melbourne based artist, writer and arts worker living with chronic illness. She is fond of all things art and history, having studied art history and curatorship and is keenly interested in the role of the arts in exploring feminism and socio-politics themes. You can find her on Instagram @amela_saward
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