Finding Strength in Vulnerability: My Journey with Friedreich's Ataxia

Hi, I thought I would start the section ‘My Mind’ with a summary of adjustment after my diagnosis of Friedreich's ataxia. I emphasise ‘summary’ because it would be hard to include all the elements. – Eilidh x

I was diagnosed with Friedreich's ataxia (FA) when I was ten years old. Little did I know it would change my life. I remember very little from before I turned thirteen, but what I do recall is hiding it. It wasn't so difficult back then; I just looked a little wobbly at times. I remember asking my mum not to mention it at school and dismissing it whenever it was brought up. I was happy; there was no reason I shouldn’t have been, and I didn't want anything to change, so I avoided thinking about FA as a whole. But that soon changed when I started high school.

High school began in 2020, and I remember feeling excited to be independent. A few months in, I had grown apart from some friends and was struggling to make new ones. I didn’t understand why I felt so different from everyone else. I recall a time when I was standing against a wall waiting for the bell when some classmates approached me. They asked if I wanted to go ice skating with them. I was so surprised and flattered. However, it turned out they only wanted to point out that I couldn’t go because I wasn’t able to walk on ice. After that, I ran home and cried until my older brother found me. I think that was when I began to feel paranoid about the way I was.

School became increasingly difficult for me, both mentally and physically. About a year and a half into high school, I stopped attending for six months. We were in a rental house far away from everything, but I didn’t mind it. In a way, I didn’t feel isolated. Sometimes, I look back at the video diary I kept during that time when I was thirteen and remember things as if they hadn’t changed—everything felt simple. But avoiding reality wasn’t the answer. After a while in isolation, I knew something had to change. I decided it would be best to join a different school for students dealing with anxiety. I planned to start after summer.

Summer was fun, but on the last day, I decided I wanted to go back to a mainstream school. I’m still unsure what made me come to that conclusion—it hit me like a wall. I started a phased return.

During my time at home, I had gotten a walker, but I didn’t feel too nervous about returning with it as I was less paranoid than I had been before. I wouldn’t use my walker at first; I hated it. It took me months to even try using it in public, and even then, I felt self-conscious.

School became easier as I got into a routine. However, in fourth year, I started to feel my worst. I was sad—sadder than I had ever been. I felt isolated. I drifted away from my friends and would eat in empty classrooms when my other friend was absent. I was scared about my future. I had bad intrusive thoughts that I tried to push away. It’s all a bit hazy thinking back now; I can’t even remember that time, and it wasn’t even a year ago.

Eventually, I got a wheelchair but wouldn’t let anyone see me using it. I thought that using it would mean I was admitting defeat, acknowledging that I had a disability, and that people would definitely not want to talk to me—even if they weren't approaching me anyway. I didn’t feel sorry for myself during those times, but I could tell others did. Random strangers in the street would see me and stare. They were either feeling sorry for me or looking because they thought young people ‘aren’t meant’ to use a wheelchair. It doesn’t bother me anymore; I like to imagine they’re jealous of my confidence.

It took some time (years) for me to accept myself, but I finally do. I still have mood dips and am not the best at dealing with them, but I’m only human—sometimes (lol.) Insecurities will always be there, but they have faded. I aspire to help young people who are going through, or have gone through, what I did. Just know it’s okay to feel insecure, sad, scared, betrayed, angry, or alone because I do too, and now I know these feelings won’t last forever. And, despite what you may believe, you are truly not alone.