Growing Up in a Brace
By Kaisa Virolainen
I was 7 years old when I was diagnosed with scoliosis in 2004. My scoliosis was juvenile (referring to childhood) and idiopathic (referring to unknown origin), and because I was so young, a brace was a more suitable option than a surgery. I would wear a brace, or a combination of braces, until I was 16.
We started an almost ten-year-long bracing journey. “We” – because my mom was there for and with me all the time. She was the first one to notice a hump on my back when I bent down, and it was thanks to her that my scoliosis was detected in an early phase before it got worse. Because the curvature wasn’t too bad and I was still young, there were good chances that bracing would straighten my scoliosis – I just had to wear it as long as my spine was growing.
My first brace was a straight night brace, but for a year, my scoliosis got worse. It started straightening only when I adopted a brace mix of an overcorrecting brace for the night, which actively pushed my curvature in the opposite direction, and a straight brace for the day. I wore this combination for 22 hours a day for four years, until I was 12 years old and could drop the day brace. I continued with the night brace until I was 16.
My mom did her best to help me stay motivated for years of bracing. She promised to buy me a horse when the treatment would be over (I loved horses), and after every visit to the hospital, we went to the cafeteria and I could eat anything I wanted. I always had ice cream.
Encouraging environment was welcome because in bracing treatment, the child has a big responsibility on their shoulders: no one could wear the brace in my place. I had to learn to deal with the prospect of time that felt incomprehensible. I remember calculating in my head as a 7-year-old primary school student that the treatment would probably be longer than my life that far.
Understanding this amount of time was hard, so my strategy was to focus on one day at a time instead and try to worry about my brace as little as possible. After my body got used to it, forgetting about the brace got easier and easier. But it wasn’t possible all the time, because small and bigger issues emerged from time to time. The brace made holes in my clothes, I had to think how to tell my friends about it, what kind of sports I could and should do, and sometimes my skin got very irritated because of the pressure of the brace. Although I took my brace treatment seriously, sometimes it was hard to find motivation to put the brace on every single day.
Eventually, everything went fine: at my last visit at the hospital, at 17 years old, my scoliosis curvature was below moderate 12° and was going to stay there. But the challenges along the way would have been so much easier to confront if they hadn’t come out of the blue. I didn’t get to know anyone who would have been in the same situation as I was, and we were not able to find any non-medical information about scoliosis. It would have been encouraging to know that I wasn’t the only one with a brace, let alone be able to exchange thoughts and practical tips for life with a brace.
Because we never found peer support during my bracing years, my mom and I wrote down our experiences into a book to offer resources to families that are in the treatment today. Growing Up in a Brace was published in English this spring. Next to sharing our journey in the book, we wanted to discuss things like motivation, mental health and parents’ experience, and share practical information about scoliosis – all things that we would have wanted to read when we were living with a brace.
I am 25 years old today. We wrote our first scoliosis book in Finnish when I was 16 and my brace treatment was ending. Almost ten years have passed since – my scoliosis isn’t present in my daily life in the same concrete way it used to be when I was still wearing the brace. But it stays with me, as do the memories from my bracing years. Distance and perspective have also allowed me to see aspects of my scoliosis treatment I didn’t think about back then. For both my mom and I, writing the book has been a wonderful opportunity to take time to process the brace treatment and think back to all those good, bad, and funny moments there were over the years. We hope that sharing our learnings can offer one form of peer support for anyone affected by scoliosis, and that way make their treatment a little bit easier.
