Sarah- Leanne Trappe

Today, I write this from the library. I am sat in my favourite spot in the sun by the window. It is a wonderfully summery day and I am quite content. My mind wanders to think how unbearable it would be sat here in my back brace, the sweat pouring down the soggy vest I wear underneath. At 29 the experiences of my 13 year old self seem a distant blur. However, it was in that year that my scoliotic road was paved and it is in this current 29th year that I find myself recovering from spinal fusion surgery.

For many years, I lived with the discomfort and pain of my condition, pretty much unaware that there was any other way of being. I just got on with life like anyone else. I naively believed my condition had been treated way back when and that was that, I had quickly swept my 3 ½ long brace years under the carpet and thrown the rotten thing straight in the bin.

My discomfort had begun to worsen in my late 20s and in the 2 years I’d been living with my partner he had seen a distinct disintegration in both the appearance of my curve and the effect the (previously little mentioned) condition was having on my everyday life. The end result was waking up in Queens Medical Centre in Nottingham with rods and screws and a couple of added inches to my height.

Undergoing a major operation for my spine made me realise that I should never have just pushed the brace years from my mind. Having been made to confront my scoliosis, I realised that I had some psychological healing to do. However, I also realised the progress I had made following my brace treatment. I wasn’t a fan of school and it was made worse by being forced into a strict uniform with blazer and tie over the top of a solid, thick plastic cast pulled as tight as possible to push the bones closer to where they should have been.

Smelling of surgical spirit in the hope of preventing sore patches, I was still made to stand in assemblies and had a horrendous PE teacher who would still try to force me to do as much sport as possible and showed little empathy when I would be too hot or sore. I have often envisaged shoving that woman into a brace and pulling the straps as tight as possible then forcing her to run around a field!

I got on fine mostly and everything carried on as normal. I went to Germany on the school trip, I sat my exams and went to parties. I don’t think anyone was really aware of the brace and even less aware of the restriction it caused. It hurts your ribs, chest, nicks your skin, leaves dents, makes breathing harder, and emphasises embarrassing tummy rumbles!

While hunting for photos from the three and a half years in a brace, I have found only five! Presumably my self-consciousness forced me out of the aim of the unforgiving lens. A shame really, I now realise there is no need to hide! The photos I did find jogged my memory of the punishing plastic that forced the flesh to stick out of the bottom
and top, which is why I often wore a baggy shirt over the top. Being quite tall, trousers were often short anyway but since they now had to sit high up over the ‘hips’ of the brace, they looked like something a hobbit might wear. I was lucky that, because of the Spice Girls’ Sporty Spice Mel C, the fashion at the time shifted to include baggy clothes, which fitted over my brace, disguising it fairly well.

It is hard to dress in a feminine way but there are ways around it and it could be used as a creative challenge! If I was to relive my brace years, I would customise my brace in a wonderful arty fashion and wear it with pride instead of trying desperately to hide it and then tell those who noticed that it was a bullet-proof vest—my Dad, of course, being a secret agent.

It isn’t an easy time being a teenager and I am now in little doubt that the issues that I faced as a result of wearing a brace had some bearing on my later psychological problems

At the time, there didn’t seem to be much awareness of scoliosis and even less understanding or empathy for what it is like to wear a back brace for a young girl. There was no hint of psychological support in any form. Whilst I think this situation may be improving there is still a lack of awareness, and schools in particular need to be made aware of the issues surrounding scoliosis and its treatments. Platforms for information and research development, such as SAUK and Backbone, are paramount examples of the progress being made.

At the age of 24 I was diagnosed with anorexia nervosa and chronic low self-esteem. People have often alluded to the suggestion that it was an inevitable fallout from the brace, a suggestion I deny. The anorexia was not a ‘side-effect’ of scoliosis. However, it isn’t an easy
time being a teenager and I am now in little doubt that the issues that I faced as a result of wearing a brace had some bearing on my later psychological problems—which definitely does not have to, and should not, be the case! It is, like any medical treatment, a challenge; but it is, like any medical treatment, a means to an end. If it works, those brace years will seem like the gift of a lifetime.

I may have ended up having surgery but in the years between leaving my back brace and my curve eventually progressing I have travelled to Europe, Australia, America, and Morocco, graduated twice, and made a life for myself in a new city. I am not trying to blow my own trumpet! I just want to show that the brace may feel horrendously tough at times for a young person and it can be hard to see the end. But there is an end—an end to those brace years, and the beginning of an improved life that you can live to the full with pride and a new feeling of freedom.

Don’t be afraid to confront any emotions or issues you face as a result of bracing and remember that you are brave and it isn’t forever. If you’re around someone who wears a brace, remember the issues you faced as you grew into adulthood and then put yourself in their shoes.

I am overwhelmed at the bravery of some of the young people going through diagnosis and brace-wearing who share their experiences online. The technological advances in brace design including recent pilot studies in 3-D printed braces creating more sleek, comfortable, and fashionable braces also amaze me. The future of the back brace appears to finally be moving with the times. It’s an encouraging sign and I applaud them. I particularly like the online spaces people have created for sufferers to shout and complain, somewhere for young people to express the emotions surrounding their condition or their brace treatment. Such a forum is great for young sufferers and brace wearers to let off some steam and get off their chest all the ‘little’ things that non-sufferers can’t grasp. Keep up the good work and be proud of yourself.
 
I have a blog dedicated to scoliosis and  creative recovery: www.growingpains2014.tumblr.com

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