What It Felt Like to Be a Teenager With Adolescent Idiopathic Scoliosis

As an adolescent idiopathic scoliosis (AIS) warrior of 10 years, I decided I was in a place where I felt ready to share my story here.

Certainly, I say with conviction that in my experience, living with an invisible, chronic health condition or illness of any sort can be a debilitating ride. Even as we maintain an image of normalcy, not many may understand the energy it takes just to go about life’s daily rhythms sometimes.

I experienced breathlessness, aches, feeling uncomfortable sitting in certain positions, and was fidgety during my three-hour A-level examinations back then — almost on the brink of breaking down because I could not afford to not finish the paper. I felt emotional frustration seething within when I couldn’t find suitable clothes most of the time. The bracing period for my scoliosis and the noticeable physical effects were extremely difficult. I also had to go to the toilet constantly to adjust my uniform top so that it balanced out and I appeared inconspicuous. I had to to wear a jacket at times to hide my scoliosis when it was too prominent. And I had a fear of the wind when I wore certain tops as they outlined my scoliosis and my top could fly up. It was sometimes to the point where I’d break down in the public toilets because I couldn’t balance everything out.

I went through all of it.

My teenage years weren’t full of sunshine and rainbows. Wearing a Boston brace, having to still walk home under the midday sun after class, being made fun of by classmates who were curious about my “iron-hard bulging torso” back then. Never-ending x-rays after school only to be met with disappointment, tears welling up in my eyes every time at my appointments. Being diagnosed with tomophobia. The effects of my scoliosis never seemed to end.

I don’t really know where my life story will bring me as of yet, but I do hope there will come a day when there will be less invasive options for treating adolescent idiopathic scoliosis. I hope doctors will better cater to patients undergoing the bracing period and that anyone affected by AIS will be able to get affordable care and adequate emotional support. Adolescent idiopathic scoliosis is not a commonly spoken-about topic in my country. But still, I hope sharing my story can be a way to honor other AIS warriors out there.