One of the hardest issues that I have faced with Turner Syndrome is when is the right time to tell others about the disorder and how will they treat you differently as a result. I know parents are at times uncertain of when to tell their daughter of her condition. I know each case is different depending on when you are diagnosed. Often those that are diagnosed are in their teen and even adult years. I know this is a personal decision and one that should be handled carefully. This week I wanted to share my journey and how I handled it and what advice I have.
I start with how my parents approached the topic with me. I was diagnosed at birth so when my parents felt that I was old enough to fully understand they sat me down and told me of my condition. I was 4 years old. My parents had many visits with a Genetic Counselor so it prepared them for the conversation. Well as any parent can be prepared when telling a child they have a genetic disorder. They sat me down and explained what Turner syndrome was and how I was impacted. They stop and let me ask questions which of course I did. Most of all, they did it to make me understand that I should take this seriously and know that I was loved and had their support. My parents laid out to me that I will have challenges but that I should not let my limitations stop me.
For as long as I can remember my parents were always upfront and honest about my condition and never left me out of the discussion. Whether it was with medical staff, school staff or just any issues that impacted me they never left me out and always asked my input. I was a part of every decision that needed to be made. That I feel was the best thing they could have done for me because it made me a strong advocate for myself as I approached my teen years.
For most of my childhood, I didn’t really talk to my friends about Turner syndrome. I kept it pretty much to myself. It was not that I was ashamed it was mostly that I was certain they wouldn’t understand as Turner Syndrome is so rare that most people have never heard of it. To be honest I also wanted the school to be the one place that I was mostly a regular kid and I really did not want to lose that feeling. I had a hand full of friends that I shared my story with and knew I could trust enough and when I was ready I would share my story with the rest of my friends.
It wasn’t until my sophomore year of high school that I opened up about having Turner Syndrome to my classmates. I was taking a parenting class and one of the projects was to do a presentation on genetic disorders in our textbook and Turner syndrome was one of them It was my opportunity to share my journey. My teacher who knew that I was impacted by this disorder encouraged me to share my story as it would help put a face to the topics we were discussing in class.
A week later I stood in front of the class and shared my stories. It was not easy and believe me I was still unsure I wanted to do this but I wanted to put a face to the disorder. It ended up being cathodic for me in a lot of ways. Most of the students who were in this class with me were friends and classmates that I have grown up with I never told them that I was battling this. I was concern that they would look at me differently are treat me differently. they did not in fact they were extremely supportive. they asked questions of course but they never looked at me differently and that was the best outcome I could have asked. I continued to be just the normal kid they always knew.
Telling others is never easy and it will be ongoing throughout your life. whether it is coworkers, new friends, and most importantly your significant other at one point you will be faced with sharing your journey. my advice is simply take each situation as it comes and you will know yourself when your ready. By sharing my story I am not just helping myself be understood I am spreading awareness of TS . it is my hope if we all have a courage share our story with others we will help those who have not yet been diagnosed start the treatment process sooner and maybe just maybe lead a much of a normal life as possible .
