‘Accepting My Own Disability Was Just The Start’: Living With Turner Syndrome

Posted on October 24, 2016 in Disability Rights, My Story

By Gayatri Nanda:

I was 12-years-old when I found out. I was devastated at that moment. I had been taking medication since I was five-years-old. I never knew why the entire time but now everything became crystal clear. It broke my heart and I cried for hours unable to come to terms with reality and unwilling to accepting who I was. However, I never knew how this journey would change me.

Turner syndrome is a rare chromosomal disorder that affects women. Affected women can potentially develop a wide variety of symptoms affecting different organ systems. Common symptoms include short stature and premature ovarian failure. A lot of women with Turner syndrome are infertile. A variety of additional symptoms can occur including abnormalities of the eyes and ears, skeletal malformations, heart anomalies, and kidney abnormalities. Intelligence is usually normal, but affected individuals may experience certain learning disabilities. Turner syndrome may be diagnosed before birth, shortly after birth or during early childhood. However, in some cases, the disorder may not be diagnosed until well into adulthood, often as an incidental finding. The exact underlying cause of Turner syndrome is unknown.

It’s a syndrome very close to my heart because I was born with Turner Syndrome. My disability is more mental in nature. I filter information through special techniques. I realised later in my life that I felt isolated because I was being measured by my ability to absorb information and deliver results as the only metric of success for me and my instructors and I were both failing.

Accepting my own disability was just the start. The road to prove myself seems long and less travelled. It made me feel isolated and hampered my confidence a lot. Looking back, I am grateful this happened to me because it taught me the most important lesson of my life: if people look down on me and don’t accept me because of my learning disability then they don’t deserve to know me. These people are the ones who make me want to work harder so that I can prove them wrong. Fighting this instilled the ‘never give up’ attitude in me. It took me a lot of time and patience but this syndrome has become my strength instead of being a obstacle.

This article is not for me to look in good in your eyes or to gain sympathy. It’s there because of the lack of awareness regarding Turner Syndrome. People are generally not able to identify this disability until it’s too late. I keep reading these articles about mental disorders and how people are so unaware about them. Knowing people who have made the most obnoxious generalisations and insensitive statements about mental disorders, I am extremely lucky to have parents who believe in me and provide for me. They have been with me every step of the way and I can never thank them enough for all their support. I would not writing this if it wasn’t for them.

However, there are so many girls out there who don’t know that they’re suffering from Turner Syndrome and even if they do know, they cannot financially afford the medication. Or in some cases, they may not know how to tackle it. In our society, talking about such issues is taboo, which is the reason for the lack of awareness. I want to start creating awareness about it by writing down my story so hopefully people understand what the syndrome actually is, so they stop looking down on anybody who has any sort of disorder, and so that people who have any disorder are not ashamed of themselves and carry themselves with confidence.

​If anybody is interested in sharing their experiences, please email your story to turnerturninglives@gmail.com. You can share your story anonymously – goo.gl/forms/d8CAOYu5GgG.

This article was originally published on the author’s personal blog.

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