Did you know that February is Turner Syndrome Awareness Month? Since we’re in March now, I’m late to helping spread awareness, but better late than never as is always said! Also, any time is a good time to spread awareness! I’ve talked a lot about my experience with Turner syndrome on this blog, and I wanted to share a little more in this latest post. I haven’t talked much about this on my blog, but I receive disability benefits. It was not easy to prove that I really needed the benefits, as my disability is invisible. I was diagnosed with Turner syndrome at around 13 years of age. Turner syndrome can cause a lot of complications. One of those complications are learning difficulties, which I have.
Even before I was diagnosed with Turner syndrome, my parents and teachers noticed I was struggling to keep up with my peers. This made school and many everyday activities difficult for me. My father wrote a heartfelt letter detailing his experience raising me and my day to day struggles. He sent it to the court handling my case for disability benefits, and the court clerk read it. The clerk cried and suggested the judge read the letter too. The judge did read the letter and ruled in favor of my father and I. This was just the first of several hills to climb in my adulthood concerning help with my disability.
Recently, my father found the letter he wrote, and I read it over. It was very interesting reading about my day to day struggles through my father’s perspective. To most people meeting me, I might not appear to have any disabilities, especially if they just spend a few minutes with me. However, to my father and those who know me well, my disabilities are striking. Also, Turner syndrome and the complications connected to the disorder are not well known, so those assessing the need for disability benefits had a difficult time understanding why I need them.
Turner syndrome affects those with the condition differently, so it’s important to clarify that the condition does not always lead to disability. Many women lead typical lives. However, for those like me who do develop difficulties, it is important for them to feel supported. I started my blog for this reason. For a long time after I was diagnosed with TS, I didn’t want tell anyone about my condition. I only told a few people and kept many others at arms length. As time rolled on and I struggled with getting disability benefits, I knew I could no longer keep my condition to myself. I knew I had to share my experiences. My hope is other girls and women with TS feel understood.
There is nothing wrong with living with a disability. Sometimes it can be a different and beautiful way of experiencing the world. However, it is important to remember that not all disabilities are easily visible, and people with disabilities can live typical lives with a little support.
Life with Charli 