Patient Stories

Hi, my name is Sophia. I’m 14 years old from Hong Kong, and I was diagnosed with adolescent idiopathic scoliosis at age 12. I was prescribed a full-time WCR brace and physical therapy. I had heard from the doctors that scoliosis was something that couldn’t be cured, and the best that we could do was slow down the progress.

That summer may have been one of the worst summers I’ve experienced. It was often frustrating for me to fi nd that I couldn’t do something that I used to be able to. I was forced to quit the national team for the following season. I was prescribed to wear the brace 22 hours a day, so I could not participate in training, and the brace made my back so stiff that it was hard to play to my previous level. That summer, I couldn’t go surfi ng like I usually did with my family and I had to watch all my cousins surf while I was just sitting there on the beach.

There were times when I thought, I wish I could just receive surgery so all of this would be over. There were many times when I would think, why does it have to be me?

It felt like I would forever be controlled by scoliosis as it’s a lifelong journey.

I was, like many, afraid of being seen with a brace in school. It was embarrassing for me to be different from others, and I was worried that others would bully me. I chose loose, oversized shirts to try and cover the brace at school. Worse, our school had a yearly school trip abroad. There was no hiding then. I argued with my parents to not bring the brace to Thailand and to not have to do physical therapy there, but my parents refused. They were worried about the progress of my scoliosis and wouldn’t take any chances.

Unwillingly, I took my brace and yoga mat to Thailand. I hated having to explain what my two big rucksacks that I couldn’t check in were, and I hated it when I was crossing security and was pulled into another room to do a comprehensive check-up on my brace.

After almost two years of WCR bracing and physical therapy, I found that my scoliosis had miraculously decreased to 8° lumbar and 0° thoracic. I was ecstatic when the X-ray results came out because I had given up so much for scoliosis, and I had made a promise with myself that I would resume badminton if my curve got better.

The hardest part of having scoliosis wasn’t bracing or physical therapy, it was the impact on my mental health. I used to stutter every time someone asked me about something related to scoliosis. It was hard for me even to say the word “scoliosis”. It was a part of me that I wanted to hide. I could feel that my self-esteem was going down, and I started becoming more shy. I was always afraid that others would notice that my shoulders were lopsided. I haven’t fully learnt to embrace my curve, but I’m working on it. Hearing other patients’ stories has always encouraged me to continue my journey in recovering – the fact that I am not alone in fi ghting my battles, with many much more severe than mine, inspired me to continue fi ghting my battle. Now that I’ve recovered, I want to inspire other patients and tell them that a. surgery isn’t the only way out and b. that they’re not alone.

I ended up finding out that some of my closest friends had scoliosis, and I had no idea because we were all too afraid to talk about it. Now, I hope to be able to create a support community within scoliosis and share stories about scoliosis warriors to encourage other people going through the same process to know that they’re not alone. Hearing their stories helped me fi nd courage to continue physical therapy and ultimately improve my curve. I’ve started an account called @scoliostars on Instagram to collect stories, and I hope to start an online magazine for this to be more accessible. I hope this will help other patients feel that they are not alone.

My disability isn’t really invisible in the way that it has impacted my life in many ways, and I’m grateful that life has given me this disability.