Living with a rare disorder such as Turner Syndrome can sometimes be lonely. We often feel misunderstood, and trying to tell others about our diagnosis is more complicated than people often think. On top of that, we often suffer from social anxiety, making it even more difficult. Given these issues, how do we let others in? How do we share our journey and make more people aware of Turner Syndrome? How do we balance telling others, and the fear of them changes how they see us.
Being open to others has been one of the most complex parts of living with Turner syndrome. For so long, I kept my disorder primarily to myself. Not that I was ashamed or embarrassed by my condition. I certainly was not. I always felt that there was a reason God chose me to be the 1 %, and I owed it to him to live my life with purpose and to the fullest. I didn't tell my friends as I suddenly didn't want them to look at me differently and change their orbit around me because I was living with Turner Syndrome.
It wasn't until my Sophomore year of high school that I was asked by one of my teachers if I would share with the
class about living with Turner Syndrome. My first response was no. I told her I would think about it and returned the next day. After a long talk about how it could help others understand Turner Syndrome, I said yes and began working on my assignment. It was finally my turn to share my diagnosis with the class. I was terrified as many of my good friends were in this class with me; even the boy I had a major crush on was in this class; needless to say, this was a challenge. It went better than I ever thought it would, and my friends were so supportive. The boy I had a crush on never asked me out, but we are still great friends. I don't think he ever knew I liked him. Anyway, the point is by telling the story; I begin a journey of letting others know about Turner Syndrome and raising awareness.
Yes, that first moment was uncomfortable for me, but it led me down a path of being an advocate for those with Special Needs. I help almost 25 others understand Turner Syndrome by overcoming that awkward moment. I learned that by sharing my experiences, I could help others to show more empathy to those battling
health and learning disabilities. I knew that sharing those uncomfortable moments, although scary, was allowing me to open up and build more substantial and impactful relationships with others.
I have realized that God's purpose and maybe the reason he has chosen me to be the 1 % percent to survive was for me to be an advocate for his most precious children. I know it is hard to let others in, even to express ourselves, but when we do, we will find our true selves, and that is when we truly spread out wings and fly.