Sometimes I almost forget about my back brace

The chief physician at my first rehabilitation program told me I needed a brace then. I was eleven years old. During that three-week program, the brace was optimized and adjusted to my body to avoid sore areas.

I didn’t want to be at the rehabilitation program at all. I wanted to go home right away because everything was unknown and I was scared of getting my first brace. But my mom didn’t give in there, either, and motivated me to stick at it. And that was exactly right.

It was already much better the next year because I met another girl who lives nearby. We became friends and even started a YouTube channel about wearing back braces for scoliosis. The third year was good, as well. A girl from my class was there then, too. It was easier if I didn’t feel lonely and someone else my age was there who I got on with.

I was supposed to wear the brace for 18 hours a day, and I did so from the very beginning. I kept it on at night from the get-go. I was very motivated. At first, my mom used to check whether I was actually wearing it, and felt my back. I didn’t like that. I said to her, “Mom, I’m wearing it already.” Eventually, she learned to trust me and was proud of me.

I then had an x-ray check-up once a year. When I had a growth spurt, I had to go for more regular check-ups – every 3 to 6 months. They examined my spine and adjusted the brace. I sometimes had to have an x-ray, but not every time.

I got used to the brace overall. It was more my mom who was worried. She felt sorry for me as well, especially in summer when it gets extremely hot beneath the plastic brace.

The brace barely restricts me at all in my daily life. I move about as much as I can. But if I want to bend down, I have to stand up first and then bend my knees because I can’t curve my back.

I’ve never had any problems with eating or sore areas. I didn't wear a special shirt under my brace either, a normal t-shirt was enough for me. I just have to make sure there are no creases.

The only restriction I have is that I quickly get out of breath, like when climbing stairs or doing sports. That’s because my chest and my lungs can’t expand.

I didn’t wear the brace at school at first because I didn’t want anyone to see it. Only my closest friends knew about it. I tried to keep it from everyone else, though. If they saw it by chance, like when getting changed for sports, they usually asked about it. Nobody ever teased me.

And I tried to handle everything with a sense of humor. I asked other people to feel my belly and then told them I had really strong and hard muscles. There was one funny situation: I was telling a friend about scoliosis and said, “I’m at 22 degrees.” A boy was walking past and said, “What are you talking about? It’s only 4 degrees outside!”

My teachers sometimes reacted strangely, especially if they didn’t know about it. I think it’s a good idea to talk to all of your teachers with your parents.

I never wanted to cover the brace up with my clothes; I wear it with confidence. I don’t exactly draw attention to it, but I don’t hide it, either. And I’m not worried about what boys might think. If someone doesn't like me the way I am, I don’t have to like them.

I don’t let it stop me doing sports. I love dancing and breakdance. That’s all going really well. But when we move sideways, one side is always better than the other. That's a strange feeling. What’s different about me is that I have weaker stomach muscles. The brace gives so much support there that my stomach muscles don't have to do very much.

I also play violin. I’m not willing to give that up. I already played before my diagnosis and I absolutely love it. I just try not to play too much each day because it’s a one-sided activity. And because I have to take the brace off to play, otherwise it’s too difficult to hold the bow and move freely enough.

I like trampolining too, although I make sure not to overdo that, either. But it’s better than getting no exercise, and I really enjoy it. I’m happy that my parents say I should try out everything that’s possible. It motivates me to wear the back brace.

The YouTube channel that I started with a friend has definitely helped me. Making the videos was a great distraction and good fun, and it gave us a sense of achievement: After a while, we really had lots of followers, even including a boy. We really put a lot of effort into making and editing the videos.

And I looked into scoliosis in more detail because lots of followers asked us questions. Medical questions, like how severe our own scoliosis is or whether the brace helps and what we think of the physical therapy. But also very practical things like whether you can take valuables with you to rehabilitation programs.

The YouTube channel has given me a lot of confidence. Sometimes I almost forget that I have scoliosis and wear a back brace. The funny thing is, I can talk freely about scoliosis on the internet. But I don’t like to do that in everyday life. I don’t want to stand out, so I only talk to very few people about it.

My parents and I came up with things to motivate me. Every now and then I was allowed to choose a present or reward if I really wore the brace well.

Thinking about the future helps. I picture no longer having to give the back brace any thought once it’s gone. What I’m really pleased about, and what really motivates me, is that the scoliosis has got better: from 24 to 8 degrees, even though I grew almost ten centimeters over the last year. That makes it all worth it.

I was really lucky that my scoliosis was discovered so early. Things may not have improved so much otherwise.