My strategy for coping with the back brace was rebellion

There was no doubt that I had scoliosis. You could clearly see it. I had what's known as a “rib hump.” But we only realized how extreme the scoliosis was after doing the first few x-rays: The angle was over 60 degrees!

I was actually supposed to have surgery. But my parents took me to see a doctor who was an expert in conservative treatment, even for extreme scoliosis. He was very well-known, a luminary, and worked at a rehabilitation facility.

During my first rehabilitation program, which lasted six weeks, I was “trained” to use the back brace by wearing it a little longer every day. I also started an intensive ‘Schroth’ physical therapy method. I found out a lot about scoliosis, too, and learned how to make my everyday life more back-friendly.

My life was turned upside down within half a year: from the chance diagnosis by the pediatrician, to the back brace, to the rehabilitation and physio. Without any symptoms beforehand! I really struggled to understand it all at the time. I was only child.

That’s the mean thing about scoliosis: It doesn’t cause any pain. You have a curved spine and don’t even notice it. As a child and teenager, your body is so supple that your ligaments and muscles balance lots of things out.

I missed a lot of school during the first rehabilitation program – it was right between the summer and fall vacation. But I went back to school as normal after that. The scoliosis didn't really affect my school life.

The only difference was that I was given a second set of school books so that I didn't have to carry them to school and back. That would have been very difficult with the brace.

With such severe scoliosis, I definitely needed treatment. We were told that otherwise the curvature would increase by one degree every year, up to 90 or 100 degrees. And that would shorten my life because my internal organs would be squashed. But nobody tried to scare us, they just emphasized how important the back brace treatment was.

The aim was to stop the curvature from getting any worse. But they told me from the beginning that it wouldn't be possible to straighten my spine. Not with scoliosis as severe as mine. And that they would have to operate if my heart or lungs were restricted by the scoliosis. But we could try conservative treatment first.

And it helped. I still have the same measurements in my chest as at the start, maybe three or four degrees more. It has increased a little more further down, but not much. And it’s stable, even though I haven't worn a brace for over ten years now.

The treatment included the back brace, intensive ‘Schroth’ physical therapy, and muscle-strengthening exercises. And a rehabilitation program once a year. They also showed me exercises there that I was supposed to do at home, ideally every day or at least every working day, for half an hour.

Between the ages of 12 and 16 I actually stuck to that: I forced myself to do it because I was scared of needing surgery. But my parents still often had to pressure me to remember and do them regularly.

I was supposed to wear the brace day and night for 23 to 24 hours. But the orthopedists still recommended that I did sports. No competitive sports and nothing with one-sided strain, like tennis. But they said I should do endurance sports.

The problem was that I wasn’t the sportiest person in the world, even before getting the back brace. And the brace made me feel really stiff and inflexible, and I wasn't very fit. I couldn’t keep up with other fit and healthy teenagers who didn't have a back brace.

So I preferred to do sports like yoga and fitness exercises back then, because you aren’t compared with other people. Later, without the back brace, I really enjoyed going to the gym.

I could only ever run short distances, like sprinting for the bus. But cycling was fine and I enjoyed that.

My advice would be to choose a sport that you enjoy. It doesn't matter what, as long as you're getting exercise. In my experience, people who still exercise despite their scoliosis will be less restricted overall.

It was more difficult during puberty. I was a very rebellious teenager. I never wanted to wear the back brace! And I sometimes refused to do the physiotherapy and sports exercises, too. But I didn’t dare to completely skip it all. I was too scared of the consequences because my scoliosis was so severe.

But at some stage I’d had enough, I didn't want to wear the back brace during the day, and certainly not at school. I told my parents that I'd had enough and finally wanted to wear clothes that aren’t five sizes too big. I also couldn't stand the fact that the brace pinched me everywhere when I was sitting, and that I sweated so much under it.

After talking to the doctors, my parents accepted it and I was allowed to not wear it at school. They still tried to make a deal with me, though: I should at least wear it at home during the day and in my free time. But I didn't want to do that, either. I was just completely fed up and started wearing the brace ten hours less every day, from one day to the next.

That wasn’t good, you’re supposed to gradually reduce the amount you wear it, sort of “wean” yourself off. But it was a compromise so that I at least wore it some of the time. It was a difficult age and it wasn’t easy for my parents.

I sometimes had sores from the back brace. I was given a special cream that helps the skin to toughen where the brace rubs. It made the skin thicker and harder, a bit like leather.

I was also given a special shirt to wear under the brace. It’s like a vest without seams, to protect the skin. Unfortunately, all of the undershirts looked awful and had a weird cut. They went up to my neck, and there weren't any sleeveless ones or ones with low necklines. Luckily, my godmother is a seamstress and she altered all of my undershirts.

At school, I tried to hide the fact I wore a back brace. Whenever I should've mentioned it, I'd be stubborn and refuse to. I often made excuses. But was actually just trying to cover up the fact that I can’t move very well.

There was one situation I remember where I was asked to pick a pen up off the floor under the blackboard. I would've had to bend down in front of the whole class. But I didn’t want to: Because of the back brace, I always had to bend my knees to reach the floor, as if I had a slipped disc. So I simply refused, without saying why. And then overdid it to the point where my parents were asked to come in to school. That's when my teachers first heard about my back brace. They were pretty surprised. My coping strategy was rebellion.

When I was 20, I moved to a different city to go to university and had to organize my check-up appointments myself, but didn’t keep on top of it. I didn’t really take much care of the scoliosis at that time in my life. The critical growth phase where scoliosis can get worse was over. And I was happy to be rid of the brace. I thought my life could now begin, I could launch into my studies and start enjoying life. So I was really disappointed when I got crippling back pain about two years later. It was a true crisis for me because it meant the scoliosis was still an issue, I couldn’t just forget about it.

At the scoliosis consultation in the university hospital, they advised me to take certain medicines for the pain. And I also needed counseling and support from time to time. If you know that you’ll have to cope with scoliosis for your whole life, it’s important to communicate well with your doctor. I’ve seen that in a lot of scoliosis patients. It took me a long time to find an orthopedist who I felt happy with. I see him every three months for a check-up or whenever I need to if I’m in pain.

I got in touch with the inclusion office at my university when I was studying. I was allowed to use a room there with a height-adjustable desk, for instance. It wasn't easy, though. To realize that inclusion is an issue for me, too. Not all disabled people need a wheelchair. I'm restricted by my chronic disease, too. It has nothing to do with your age.

There's generally nothing stopping you from getting pregnant if you have scoliosis. I can really imagine having a child when I’m older. In fact, pregnancy is said to help in the treatment because the hormones make your tissue softer and more supple. Apparently, doing lots of active exercises and physiotherapy in a certain stage of pregnancy can even improve the scoliosis.

What I’m a little worried about is that my child might inherit my "scoliosis genes." The likelihood is very low, but I still don’t want my child to need a back brace – and then I'd have to go through it all again as a mother, too.

I'm very careful about which friends I tell. I always make sure I think they'll be able to deal with it. I might have misjudged a lot of people, and kept them out of my life because I thought they didn’t have enough empathy or patience. I’m just really cautious and not very carefree.

But I’ve learned that you have to tell people. I didn’t used to talk about the fact I had scoliosis. And then people didn’t take me seriously if I had back pain and couldn't join in with everything. They'd say things like, “A sore back? Everyone has a sore back,” or “Rubbish, stop whining!”

I would advise young girls or boys with scoliosis to accept the fact that something has been taken from them. To let the anger and sadness out, and not play the tough guy or girl as if it doesn't matter. It’s better to talk with other people about it. With friends, teachers, but also maybe with a neutral person. As a child, you don’t want to be a burden on your parents, you don't tell them everything. But you should never think you're a disappointment or a burden. It's not your fault.