Gemma's story

12 August 2020

First things first, my name is Gemma and I live in the UK with my parents and 2 sisters. I am 16 years old and I am taking science-based A-Levels in September to go into a career in healthcare. I enjoy reading, crocheting, volunteering and baking. I am originally from Italy and moved to England when I was 10 years old.  I had scoliosis diagnosed at birth as part of another medical condition. I currently wear a hard-plastic back brace for 22 hours a day, for 3 years and counting. 

I decided to write this blog to help other teenagers with scoliosis and/or a back brace, feel confident and supported in their journey for a straighter spine. I want to share my story and experience as well as the tips and tricks that I learnt along the way living in my turtle shell.

When I was told that I had to wear a back brace at age 13 in Year 8, I was very stressed and scared. But I knew that getting a back brace was the best thing for my spine to avoid surgery, so I agreed. On my next hospital appointment, the technician started the process to make my brace. First, I was sent for X-rays to see my curve and then a plaster cast mould to make the brace in my size. I was very lucky and got to choose a colour or pattern to put on my brace and I choose a pink background with small rabbits. Then I went to have my new back brace fitted and edited. Finally, I took my back-brace home, on a 2-hour train ride, for the first time.

I became very self-aware and wondered about my appearance and clothes. Knowing what to wear as a teenager with a back brace can be hard as there is a big stigma around body image anyway, but I promise it will get better with experience. 

First thing you will need is a vest of some sort (such as a cotton vest or thermal vest) to use underneath your back brace as it can get uncomfortable or painful as the brace can stick to the skin. Then, if you plan to wear your knickers above your back brace (I prefer to keep them underneath), it might be helpful to invest in a size bigger knickers. When wearing tops start by wearing naturally loose clothing such as toddies (which are my favourite) or jumpers or one size bigger tops such as t-shirts or anything that makes you feel comfortable. For trousers or shorts, I would recommend getting a size bigger, possibly with the adjustable elastic so that they can fit comfortably over your brace. As you become more comfortable in your brace, you will probably start wearing less loose clothing, but this will come slowly and gradually.

It can be difficult at first to wear the back brace as it’s probably uncomfortable and a bit sore. One way that you can relieve the soreness is to put some oil or cream on your back to help take away some on the friction and hydrate your back which should make it feel less sore. If you are in pain, you should always contact healthcare professional as the brace may be wrong or too small and therefore no longer effective. I have recently started physiotherapy as I have experienced pain in my back, and it has really helped me relieve some of that pain. Remember to speak to your doctor about this and they will refer to the right people.

It is important though that you wear it for the right number of hours (22 hours for me) so that it's most effective. Having a routine can help you to be constant in the number of hours you keep on for. For example, if you go to bed at around 10 pm every night then take the back brace off at 8 pm and put it back on before going to sleep. If you do exercise during the day, you could track the time you spend without the brace and subtract it from usual hours without it.

Sleeping in the brace can be tricky and it does take some getting used too. You make feel more comfortable sleeping on or supported by lots of pillows. Also, if you wear a bra, I find it more comfortable to wear one at night with the brace as it's a little painful without it. Going to the toilet with the brace can take a little longer, as you can choose to take the brace off or keep it on.   

When telling friends remember to tell friends who are trustworthy and will support you.  If one of your friends reacts badly or is mean to you about it, that friends weren't worthy of your friendship. When people ask or make remarks about your back brace, you have 2 choices you can either ignore them or explain to them what it is and why you need it, both are good responses. You are stronger than people's perceptions and your real friends will stick beside you no matter what. If you feel bullied or unsafe you should always tell a trusted adult such as a parent or teacher. At school, certain adjustments may make you feel more comfortable such as using a lift (if available) and a having a locker to store your book can be helpful so you don't have to carry a heavy load on your back. You may struggle to bend down especially from seated so it's helpful to ask people to pick up pens you drop.  You may want to discuss this with your school nurse, SENCO (Special Educational Needs Coordinator) or head of year/house.

After receiving your back brace, you will probably need to be closely monitored by your doctor, technician and scoliosis nurse. Remember, to ask and talk about any concerns you may have to the healthcare professional. You may have follow up appointments every 6 months or a year where you might get an X-Ray to check how your curve progress and adjust your back brace. I have done so many X-Rays in the past 3 years that the X-Ray people at the hospital remember me and know me by name! As you grow, you will probably need new braces, this is normal; I have had 3 braces in 3 years.

 

 I wanted to share some of the fun stuff you can do on you back brace too: You can 

·        Use it like a drum to make some lovely music or annoy people

·        Use it as a portable whiteboard to draw on and take notes

·        Lie on your back with your legs above the floor pretending you are a turtle 

·        Be bulletproof in battle- I don't know where this could come in use, but still

·        Fool people that someone is at the door by knocking on your brace-this is funny

·        Always stay warm in the winter as I find the brace to be very insulating in the cold and wet English winter

 

Three years after receiving my first back brace and I am more confident and comfortable with my scoliosis. A lot has changed in the past 3 years, I have grown (not a lot in height) for a small year 8 to a loud and strong Year 11.  I am no longer scared or embarrassed if my back brace shows through my clothes and I have a strong team of friends supporting me through this. I am excited for the next few years of my life as a finish my A-Levels and progress to university or an apprenticeship. I hope that my back brace works out and my curse stabilises as I stop growing so I don't need surgery. But I now know that I will not let scoliosis hold me back and I can reach my goals. I have scoliosis, but I am so much more than my scoliosis. I am Gemma and I am proud to be a SCOLIOSIS WARRIOR. I wish all who are starting this journey or are in the middle of this journey the best of luck. I will leave you guys with this Quote 

"Always remember that you are Braver than you believe, Stronger than you seem and Smarter than you think, you are a SCOLIOSIS WARRIOR"

Gemma

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