One of the things I find most difficult about being disabled, is the fluctuating nature of my condition.
A few weeks ago, I was in the Peak District by myself – climbing and walking, long solo drives and spending time in the Air BnB completely alone. I felt safe and confident.
Fast forward a few weeks – and I’ve just had one of the worst flare ups I’ve ever had.
I was on bed rest for a long time, but the last few weeks, as I start to recover, I’m learning a new way of life. I’ve relied on support every single day. Driving has largely been out of the question. Walking more than a few metres here and there hasn’t been an option. I’ve found it hard to follow conversations and the pain has been off the charts.
Having a fluctuating condition has got me thinking a lot about how this really affects me day to day, so here’s what’s been on my mind:
I’m not necessarily prepared for the worst bits. Because for the most part, I can go about my day to day without much support; when that changes – I find I’m not always ready to manage it. The pain is bad, sleep is difficult and my routine goes out of the window. I find it takes me a while to adjust to the ‘new normal’.
I’m scared of not being believed. This one is hard to admit – but it’s true. Because my condition looks different a lot of the time, I worry that people wont believe me. Not just people I know like colleagues or friends, but medical professionals too. It's hard having to explain things over and over again and I find I have a tendency to understate my symptoms or what I’m experiencing.
I have a certain amount of privilege. For the most part, I can conceal my disability with relative ease. This has become more difficult in more recent times but on the whole, I don’t ‘look’ disabled (we can discuss the nuances of that statement another time!) I know that not ‘looking’ disabled is a privilege because of the way disabled people can be treated in society. Even if we don’t know it – we are often judged on what someone thinks we can or can’t do, based on how we look. When I’m in a flare up – the option to hide it goes away. I find it interesting to reflect on and I think it’s important for me to notice my privilege.
Asking for help is hard. I think this is something we all struggle with – but I’ve found asking for help a lot harder this time just because of how quickly things can change. Like I said, from up in the Peaks to bed ridden, asking for help getting bathed for example can be a lot to come to terms with.
Fear. It’s scary. I’ve found that over the last few weeks I’ve started panicking about things I’ve not done yet and would like to. Time becomes more precious. It gets you thinking about your own mortality and what life might have been like if you weren’t unwell.
I’m interested to know if this resonates with you. We all deal with something and if the last couple of years have taught us anything – it’s that so much of it goes on behind the scenes.
I think many of these thoughts have come from how disability is viewed. What shapes our perceptions of disability and how we feel about ourselves before we become unwell.