You may remember Laura from her previous blog posts, this time she is back with another great read. She wrote this piece in support of Rare Disease Day 2025.
I knew I was rare when I was first diagnosed with ataxia. I’ve never met someone outside of my family who has previously heard of ataxia before meeting me. It was even more of a shock to find out just how rare I am- my exact type of ataxia is unknown and is potentially confined to just my dad and me. No one knows what’s truly going on inside my brain.
I’m a psychology student and my lectures often talk about neurodevelopmental disorders. I’ve learned that Developmental Coordination Disorder (dyspraxia) is one of the least common and least recognised disorders there is. A lot of the conversation about the experiences of someone with DCD are incredibly similar to my own. There are features from so many different conditions that I see happening in my own life. Sometimes it makes me angry that ataxia is recognised even less than the least recognised neurodevelopmental condition. People aren’t aware of how much ataxia affects, how isolating it can be, and how important it is to know about it. The cerebellum contains 50% of the neurons in the brain… no wonder so many functions are affected by damage to it!
I love learning about myself. No one knows for sure, so I like to make educated guesses about why I process my world differently to the majority, and why I feel the ways that I do. That’s the side of me that people see, the girl who spreads awareness and looks at ataxia as an interesting feature of myself. The side that people don’t see is the one that finds the world frustrating and scary, and is constantly in tears thinking about why she is different.
I lose my balance hundreds of times each day. People don’t realise that because I very rarely actually fall over. That’s why every part of me is constantly sore, and why I’m fatigued 100% of the time- my body and the fully functional parts of my brain are working so hard to keep me upright. Always worrying about balance is terrifying- at any moment I could fall and there’s no logical reason for it. One of my biggest fears is letting people know how hard it is to be upright, be out of bed and dressed, doing my laundry, cooking a meal, even showering. But the lack of knowledge from other people also makes me sad- if everyone did know then perhaps my life would be a bit easier. I hate using ataxia as an excuse for why I might be rude/annoying/difficult to talk to sometimes, but most of the time it is the true explanation (which I don’t use because I don’t want to be treated differently- there’s no winning with this condition!).
I’ve recently been going through the process of applying for PIP (Personal Independence Payment). It’s made me focus a lot on everything I can’t do and
everything that makes my life harder than it should be. I spend my life trying to live it and not let ataxia define me or hold me back, and now this application wants me to focus on everything I can’t do? There’s several times during this application where I’ve gone back to my old way of thinking- believing that this condition that makes me unique is the worst possible thing to happen, and all it does is make me unique in a bad way.
That’s really not true. Yes, ataxia does limit a lot of things in life, but the way it makes me unique is never a bad thing. My brain is interesting! And I like being more rare than anyone could ever imagine.
