I Grew Up Not Talking About My Disability. I Want to Change That for Others.

As I was growing up, I always had the feeling no one could relate to my experience of living with a disability. I have spinal muscular atrophy type II and scoliosis. I felt like I didn’t really “fit” in this world as my disability was never talked about. I went through mainstream education and overcame many challenges along the way. I never had a friend with a disability or illness growing up and had no one to relate to about being hospitalized for weeks on end.

In those days, there was no support in schools. My fellow pupils helped me day by day, but I often felt ignored by the teachers. I had terrible anxiety all the time and was incredibly introverted. I’m glad things have changed since then. I felt like I needed a survival guide to get through what would be a normal day to most.

Not talking about my disability was great on one level because I felt people just saw me for myself. But on another level, it felt I was denying the difficulties I was experiencing. I’m aware my parents were never offered any emotional support by professionals, and this meant they never had the opportunity to talk about the impact I had on their lives. No one can prepare for being told their child is disabled and that their daily life would be changed forever.

I wish I had someone to talk to when I was younger about my experiences so I could have had a better relationship with myself sooner. It was easy to be depressed, frustrated and isolated in my experience. I found myself protecting those around me from the fact that life was sometimes overwhelming for me. I didn’t want to upset my loved ones, since none of this was anyone’s fault.

So I became the girl who always had a smile on her face. No one could see past this, and it took a long time for me to work through the resentment I felt towards my disability. Growing up, I constantly thought about what I couldn’t do, what experiences I was missing out on and thinking my life would never be “normal.”

This was a difficult journey of acceptance to face alone. But years down the line, this inspired me to forge a career as a counselor. It wasn’t an easy decision to specialize in disability and illness, since I knew firsthand how complex those issues can be. Having gone through my own personal journey and finally appreciating everything my disability taught me, I felt it was time to offer this support to other individuals with disabilities. I have met some wonderful people on this path. And I have helped individuals acknowledge the difficult days but, at the same time, have encouraged them not to be defined by their disability or illness.

I feel I was given this hand in life to do something positive with it. I feel passionately that individuals should be supported to reach their potential. I think it’s important for individuals not to face their struggles alone. I want to make a difference to someone on their difficult days, and I want to rejoice with the person who celebrates what their life has taught them.