Growing up with a rare condition: finding my voice and my people

Topics mentioned: disability and mental health, friends, bullying, school, alone and misunderstood

About: Leah shares how creativity and community helped them overcome school problems, bullying and being isolated by a world that doesn't understand disabilities.

I was diagnosed with a rare condition called Mucopolysaccharidosis Type 6 (MPS VI) when I was three years old. It’s a rare physical disability that affects nearly every part of my body except my brain. Growing up, my childhood looked nothing like my peers’. I spent most of my early years in and out of hospital for appointments, tests, infusions, and operations. Even though doctors knew what I had, they didn’t know how to treat it.

I missed out on a lot of school and struggled to connect with my peers. By the time I started attending more regularly in year four, I had a lot of catching up to do, both academically and socially. Kids would whisper about me and make comments - I didn’t realise that this would only get ten times worse as I got older. I had two close friends, but everything changed the summer before secondary school when I got my first wheelchair. I was super excited and thought that this would make my life so much easier. But those same friends dumped me, saying they didn’t want a visibly disabled friend.

I tried to stay hopeful, thinking secondary school would be better. At first, my wheelchair felt like freedom - a way to join in with everyone else more easily. But as I got older, people’s attitude changed. What once felt like freedom became a target for judgement. My wheelchair soon became a marker of my disability. Instead of seeing me as an individual, people started to view me through the lens of my disability. This left me feeling isolated in a world that often felt like I was an outcast. I didn’t know who I was anymore.

Because of Covid and because I’m vulnerable, I didn’t start secondary school until year nine. I spent two and a half years isolating – and those were the loneliest years of my life. When I finally joined school, I was way behind and had no support catching up. Other students called me names, like ‘dumb’, ‘weak’ and ‘stupid’ – not realising how much strength it takes to have a disability and catch up on the work I missed, while practically fighting for my life. It’s a full-time job and we should get paid for this kind of survival – but instead, we get judged and criticised by people who don’t even understand our disabilities.

In those first years back at school, no one wanted to sit next to me, let alone work with me. Teachers assumed I wasn’t trying hard enough. I explained I was being excluded, but no one listened. I had two friends – one true, but the other bullied me. I stuck around anyway because even bad company feels better than none. Having disabilities forced me to grow up fast. While others obsessed over looking and acting older, or being cool, I couldn’t relate. I would have given anything to get my childhood back, because I never really got to have one.

Then, in year ten, I was diagnosed as partially sighted. That felt like the final straw, like life was just piling on one challenge after another, never giving me room to breathe. People would say things like, “You’ll get through it.” But why is it always on me to be strong?

Being disabled is isolating in ways that people don’t talk about. It’s sitting in a room full of people and still feeling like you’re alone. It’s having a nice time then suddenly getting hit with a wave of pain. It’s struggling to put your pain into words. It’s watching friendships fade and blaming yourself because people get tired of accommodating your needs, tired of waiting for you to feel 'better' when that day might never come.

That isolation made me realise just how little representation there is for people like me. One of the ways I coped was by creating an online community on Instagram for young people with disabilities. I never expected it to grow as quickly as it did, but it became a lifeline. I’ve made so many friends who truly understand me, often more than anyone in my everyday life. We support and uplift each other, reminding one another that we’re never alone in our struggles.

I also found confidence through my love for fashion and decorating my wheelchair! It became a way to express myself in ways that I couldn’t communicate. Using my creative skills helped shift people’s attention from judgement to curiosity. Decorating my wheelchair attracted more positive attention and compliments from strangers made me feel more confident about using my mobility aids.

I also use music and drawing to help me cope and distract my mind. I joined some other online communities too, which was a great way to make friends. They’re a space where I don’t have to talk about my disabilities unless I want to – people see me first.

If you’re struggling, my biggest advice is this: put your mental health first. That might mean stepping back from toxic people, even if it feels selfish. You are the one person you’ll always have to live with, so make sure you take care of yourself and love yourself. It’s better to be alone than to surround yourself with people who make you feel invisible. Don’t change who you are to fit in. The right people will see you.

Most importantly, talk to yourself in the same way you would talk to a friend, because you deserve that kindness too.