The struggle to find the words: Katie’s life with scoliosis

I’ve wanted to talk about what it was like to grow up with scoliosis, but I really struggled to find the words. If I’m being truthful, it was really hard. It has impacted me for almost every moment of my entire life and infiltrated any memories of my childhood - both the good and bad. In my experience, scoliosis is much more impactful than people realise. 

I spent my childhood in and out of the hospital having surgeries, dealing with post-op infections and complications, as well as wearing multiple different types of back braces up until around the age of fourteen. Most of my memories centre around the hospital, including one of my earliest memories - losing my first tooth! 

I remember when my curve began getting worse and formed into kyphosis. I started to be subject to bullying, and it was brutal. It completely wrecked any self-esteem I had, and even all these years later, I can still hear the things they’d say to me in the back of my head. Although I don’t think I can blame the bullying alone for my struggles with my body, I also blame the lack of representation there was, which is why I’m so passionate as an adult to change that. 

It wasn’t all doom and gloom growing up with scoliosis, whilst it was there in the background of every moment, it wasn’t always the main character.

My parents always did their best to ensure I had the most ‘normal’ childhood possible and I couldn’t be more grateful for that and everything else that they have done for me.

Whilst there were a few things I wasn’t able to do, I never felt like I was missing out on anything. If we went to a theme park, my sister would go on all the big rides I couldn’t with one of my parents, and instead, I would get a little treat from the shop (because, despite breaking the rules and letting me on a log flume, there were understandably limits). 

And without scoliosis and the places it has taken me, I wouldn’t have met all the incredible people I have in my life and for that I’m truly grateful, but at the same time, it’s really hard sometimes. 

Out of all the things I’ve been through and dealt with, I think one of the things that can sometimes be the most challenging is that I will never know what it’s like to not be in pain. I’ve been in pain for as long as I can remember and will be for the rest of my life. 

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