Turner Syndrome Blues

03/12/2015 05:19 pm ET | Updated May 12, 2015

Sometimes I really hate having Turner Syndrome.

Not the syndrome itself, mind you. If not for Turner Syndrome, I wouldn't have met some of the people I call my closest friends. I just hate some of the medical nonsense that comes with having TS.

What's Turner Syndrome? In short, it's a genetic disorder occurring in one out of every 2,000 people assigned female at birth. Some characteristics that show up in a Turner kid are short stature, heart and kidney problems, and infertility due to nonfunctioning ovaries (in my case, they wasted away). Puffy hands and feet at birth and extra skin on the neck are other traits, in addition to visual-spatial issues, struggling with social skills, and nonverbal learning disorders.

As I write this post, I'm waiting for an appointment with my kidney doctor. He's a nice guy, and I know this is for my health, but the fact remains that I really do not want to be doing this.

This isn't the first time I've felt like this about having to see one of the many doctors in my small medical army, and believe me, I don't like that I feel this way. My doctors are wonderful people who want to do anything they can to keep me healthy and I love them for it. After all, I'm only 20 and have a lot of things I want to do before I take my final bow. It just gets so freaking frustrating that it takes all these people and a boatload of medicine to keep me going.

I don't want my life to be centered on hospitals and specialty clinics in order for me to continue having one. But it does, and there isn't a single thing I can do to change that.

So how do I keep myself from screaming into the nearest pillow and punching a wall?

I start by thinking of my sister. Grace is honestly the coolest kid on the block, and if I decide to stop taking all these steps for my health I probably won't get to see what incredible things she'll do when she becomes a grown up (please God, don't let that be too soon). I might not see my brother Jonah rise up in the ranks of the Marines and go from the ridiculous video game-loving boy he is now to the intelligent, thoughtful man I know he can be. I also won't see the day where I become a board member for the Turner Syndrome Society of the United States, and I refuse to leave this planet until that happens.

Having TS isn't easy. It involves loneliness, isolation and the feeling that nobody on the outside will ever get it. But it also means meeting wonderful people at conferences and chapter meetings who get that finding people in the circle is rare. I may hate the things that come with having Turner Syndrome, but I can never hate the syndrome itself.