Part of #crohnsandcolitisawarenessweek
How I think about myself and the life I want to live has changed since having IBD.
I’d never really been sick before I was diagnosed with IBD. So the first thing I contended with was how what I thought my life was going to be like, changed. It wasn’t an overnight thing but gradually as I got better after being so unwell, there was a certain expectation that my ‘unwell period‘ was just that, a period. There wasn’t a concept to anyone outside of my family who understood what being chronically ill was like.
Maybe because it wasn’t spoken about much but there were people who had my condition I began to know about after I began talking about it. I felt like I had to talk, mostly for my own sanity at times, but also because I was so misjudged for what I had, I had to speak up and demand changes.
Those changes were not easy things for other people to adapt to; especially when it meant I wanted changes to my job hours, my tasks there and being allowed time off to attend hospital. and I was there a lot at times. So fighting for my employment rights was the first perspective change I encountered.
From there, I also had to adapt to resting more than I had before, taking better care of myself and being a responsible patient. It was a new and challenging role at times because things changed a lot and very quickly in those early months. But as my medication routines settled down and my flare-up was better controlled, I could resume some normality of my ‘old’ life.
I would try being the ‘old Louise’ when I could but I had to accept the reality that the old me wasn’t really conducive to being chronically ill. I shifted gears and started to take different jobs. I began writing about my journey and my stories online. I became part of a support group and more vocal in aspects of my care. I began thinking about a new future that had my IBD in it.
It did change again when I began my surgical path. But I had become better or more experienced in adapting to change and being flexible with routines and expectations. I began putting myself first. I started saying no to things that didn’t feed me or benefit me. And yes, there were a lot of hard decisions, tough choices and tears but I think part of that is having a chronic illness. It’s not a ‘nice’ part of it – but tbh, what part of being chronically ill is nice exactly!? – but it’s one we accept and do. We don’t get credit for it, because most of it happens behind closed doors and inside our minds. But I’m sure if you are reading this and having IBD – or any chronic illness – you get what I’m saying. We made more decisions on a day to day basis we do as second nature, that would blow the minds of those who are fit and well.
So my outlook on how I carry myself, how I speak about my illness, my life, my work and my experiences have been shaped and somewhat determined by my condition.
Somedays I don’t like this fact at all but it is what it is.
I accept it, I know I can achieve my goals and dreams. They might be different to other people, they might even be different to the ones I had a couple of years ago, a decade ago, before university, whatever. But they are valid. And yours are too. No matter what they are, or where you are in achieving them.
Until next time,
Do you have any questions or queries? Or just want to share your own experiences? You can leave me a reply here or leave comments via my social media accounts – on Twitter, find my blog page on Facebook and over on Instagram