Being open about my back brace helped

I didn’t tell anyone about the scoliosis at first. I didn't want anyone to know I was getting a back brace – not even my close friends or people at school. It was just a difficult age. As a teenager, you don't want to stand out or have to change. I felt like I was the only person in the world who had to wear a back brace.

Then I moved on to a different school. And that was a perfect cut. I got my back brace right between changing schools. And I told my new classmates about it right away. It was easier because they didn't know me any differently.

I did my first rehabilitation program that summer, too. And it really helped me. It wasn’t just the medical side of things that was useful. Along with the back brace, I was also given physical therapy using the ‘Schroth’ method – with lots of corrective exercises and instructions. Talking to other people helped, too. Especially talking to other teenagers showed me that I wasn’t alone.

And I was really grateful because I saw that lots of other people were much worse off than me. One girl had just had surgery and showed me x-rays of what her spine looked like before the operation. She had an 80-degree curve in her spine. That was pretty extreme. It really motivated me to wear the back brace because there was no way I wanted to have an operation.

At a later rehabilitation program, I met some older ladies whose scoliosis was so severe that you could see the hump in their ribs when they were standing up. That was when I first realized that scoliosis treatment wasn't as good in the past. And once again I realized how lucky I am.

Because I was so scared of needing surgery, I was very ambitious and put myself under pressure – much more than my parents ever did.

At first, I was supposed to wear the back brace for half an hour longer each day to get used to it. I stuck exactly to the plan and was actually stricter than I needed to be.

I wanted to wear the brace all the time, day and night, earlier than planned – just not when taking a shower or doing sports. I could have taken it off from time to time in the summer because of the heat, but I didn’t want to.

But it was really difficult to get used to wearing the back brace. It was sore, I sweated, and I couldn't sleep. The doctor and the brace maker back then were pretty cool and helped me to stick at it. The first time I was there, the doctor said: “If you get fed up of the brace, just take it and throw it into a corner.” He then picked my brace up and flung it across the workshop.

I struggled to cope with the pain the first few nights wearing the back brace, and did actually follow his advice: I took it off and threw it across the room two or three times. It felt good to vent my frustration that way. It really helped me to know that I was allowed to be angry and didn't always have to love my brace.

I kept on doing physical therapy in my daily life. The Schroth methods could sometimes be quite painful and hard work. But I always felt like something was happening in my back.

I went for a check-up if I noticed that the back brace didn’t fit properly anymore because I’d grown. I had to do that about every six months in the three years of wearing the brace. I always knew it was time if the velcro fasteners didn't close properly anymore. I then had an x-ray before and after with the new back brace to see whether it was putting pressure on the right places and straightening my spine.

There were quite a few things that I had to get used to. I couldn't eat much in one go because the brace squashed my stomach. There just wasn’t much room. And it rubbed against my hips when I was riding my bike, which was pretty annoying.

It got very hot under the back brace in summer, so I had to make sure I didn’t start feeling faint. There was quite a lot of heat trapped under there – particularly with the special shirt on underneath, which hardly breathed at all. That was unbearable sometimes. I quickly got out of breath when walking uphill. I couldn’t breathe in enough because my lungs were squashed by the brace.

I was given a cream that made my skin harden where the brace rubbed or pinched. The hard skin looked a bit like brownish-blue parchment paper. My parents told me later that lots of people gave me funny looks when they saw those patches of skin at the campsite swimming pool. They thought someone might be hitting me. But nobody dared say anything. I didn’t notice anyone looking at me. I was used to people looking.

I only wore baggy clothes at first, to hide the back brace. I always thought everyone would know I had a brace because I walked in such a clunky, stiff way. But that wasn't the case at all.

At first, I bought all my clothes in the men’s department. But at some stage I started trying out size 12 women’s stuff, then size 10, and by the end even size 8.

My parents really admired one of the girls from my rehabilitation program because in summer she just wore a t-shirt under her back brace and nothing over it. But I didn't want to do that, I didn't think it was cool at all. I found it embarrassing that the back brace pushed my breasts up a bit and pushed them into the middle from the left and right. That’s why I always wanted to wear a loose top.

In 11th grade I gave a talk about scoliosis, it was my idea to do it. I explained the most important things about scoliosis, showed x-rays, and then took my back brace off.

Some people wanted to try it on. That gave them a good idea of what it was like to be stuck in there all day. They were astonished at how tight it was – made-to-measure and very rigid.

Talking openly about it all was really good, I felt like people understood me much better and I didn’t feel so alone anymore. It's much worse when people peek at you and whisper behind your back. You just think: “Just ask what’s wrong with me!” I would have liked to shout: “It’s nothing bad, it’s not contagious, it is what it is.” I know that people are simply unsure of how to react. And they don’t want to pry by asking straight out.

But my friends at my new school accepted me the way I was right from the start. They didn't know me any differently. They even made jokes about me, but friendly ones, without offending me. They gave me the nickname ‘Turtle’ – saying the back brace was my shell. That was a nice way of dealing with it.

I think getting the back brace when I was 16, right in the middle of puberty, didn’t make it easier. Your body and so many other things are already changing then as it is. A back brace is really the last thing you need. I wasn’t as carefree anymore.

But the brace didn't affect my friendships. I wasn't disabled, just limited in my movement. But I still wanted to do as much as possible by myself. So I got things like a shoehorn to help me put my shoes on by myself, and I still use it now.

I was always a little unsure when talking to boys. They look at you differently. So I avoided things like going swimming because I didn't want them looking at me. Even if in hindsight there was no reason to avoid them. I only started seeking contact with boys near the end of my time with the back brace, when I knew I wouldn’t have to wear it for much longer.

But it really helped to be open about everything in those situations, too. The boys were just as unsure of themselves, so it helped to talk normally about it.

That would be my advice to all young people now: talk about it straight away. It’s nothing bad. At the end of the day, it's no different to wearing dental braces or glasses. And you don't have to wear the back brace forever. Some people have to wear glasses their whole life.

One side effect was that my back muscles got weaker. I wore the back brace for 23 hours a day and only took it off to shower. So my orthopedist wrote me a note to excuse me from sports. Looking back, I don’t think that was a good idea.

I still wanted to do exercise. I did take part later on, but didn't get a grade for sports. I wasn't allowed to do certain things like long jump because it compresses your spine. But I still joined in to a certain extent, and that was really important.

It was hard work building up the muscles again after I stopped wearing the back brace. But I was dead set on doing sports because I realized that if I didn't do anything I would just keep slouching more and more. Not because of the scoliosis but because of the weak muscles. I enjoyed karate, cycling and swimming. That really did me good.

I talked a lot to health insurers and doctors about my career options, to get advice about what I could do. After middle school, I originally wanted to train to be a social security administrator. But then I went on to high school, then started studying, and am now doing a master's degree. The scoliosis also influenced my choice of degree: I want to work in the healthcare sector. Simply because I find it interesting because the whole system is very complex.

The problem is that it’s an office job. And if I spend a lot of time sitting, I’ll need a height-adjustable desk and lots of short breaks to move about a bit. At university, I often study standing up or walking around. I just can’t take as much strain, or only a different kind.

I wore the back brace for three years and finished up with the same degree of curvature as at the beginning. Of course I would've been happier if the scoliosis had improved a lot. But the way I see it, the brace definitely stopped the scoliosis from getting worse.