Our friend, Laura, has kindly shared her thoughts with us in support of the Rare Disease Day campaign. She talks about the importance of acceptance and a little about her diagnosis journey.
Very few people understand how hard it is to navigate living with ataxia, and even fewer understand that it’s something that affects you every second of your life- it isn’t something you can just turn off for a bit. The way ataxia makes you feel a lot of the time is almost impossible to explain, so the response of “I’m fine” just becomes automatic. I’ve gotten used to people having blank looks on their faces when they hear the words ‘Cerebellar ataxia’; they don’t know how to react or even what it is. Developing ataxia is really like learning to live with a new body- one that hurts and is tired all the time, one that suddenly struggles to do so many simple things, and one that no longer runs and jumps and does all the things that you used to enjoy doing.
My diagnosis didn’t happen that long ago, and I’m not quite ready to share my full story yet. It wasn’t really part of my life plan: being told when you’re 17 that you’re now going to have to live with a body that doesn’t want to work properly. Learning to accept having an incurable condition that’s incredibly rare is something that no one can really teach you. Support from friends, family, teachers… anyone who accepts and supports you for who you are means so more than they could ever know. Because I am so much more than just ataxia- just because I have ataxia doesn’t mean that ataxia has me.
I still have a very long way to go when it comes to accepting myself- but if someone had told me a year ago that I’d be writing this, I would never have believed them! Having ataxia doesn’t mean that your life is over, it just means that it’s different. Even though there’s so much that you can’t do- there’s also so much that you can do, and I’ve surprised myself with things that I can do when I thought I couldn’t. Living with a rare condition can feel so isolating a lot of the time, and a lack of awareness creates very little acceptance. So maybe, by sharing this, I can help create a bit more awareness and a bit more acceptance.
