Although I spend a lot of time on this blog talking about my life with Crohn’s, I also have been living with another genetic condition called Turner Syndrome for a much longer period of time. February just so happens to be Turner Syndrome awareness month so I thought I would take some time to share my experience of living with it.
My parents found out that I had Turner Syndrome even before I was born due to the sac of fluid around my neck that was seen on an ultrasound so I always grew up knowing I had it. The saying that was most instilled in me from a young age was that good things come in small packages, a phrase that carried me through my elementary and middle school years as I faced bullying due to being smaller and the other physical differences that come with TS such as a droopy eye and webbed neck.
So how exactly has Turner Syndrome affected my life?
There have been a number of social and learning challenges aside from the physical health challenges but also some struggles with anxiety and confidence that I will touch on later.
Lets start with the social challenges. Like many TS women, I sometimes struggle to know when someone is being sarcastic or being serious. This is mainly due to a difficulty in reading subtle social cues. This causes me great anxiety at times trying to figure out how to respond correctly to something someone has just said or done. The fact that when I get nervous I tend to talk a lot and make more blunders doesn’t help. So if we are hanging out, you might have to sometimes kindly help me along. I try not to let the anxiety get to me but as is common among TS women, I struggle with isolating myself to avoid uncomfortable situations, which leads to feelings of loneliness. I prefer hanging out one on one rather than in large groups because there is not as much going on for me to have to pay attention to and I don’t end up feeling as out of place or left out.
The learning challenges that come with Turner Syndrome are categorized as a non-verbal learning disability. Part of my trouble reading social cues is actually due to this learning disability. Another way that my non-verbal learning disability affects me is that I struggle with problem solving, which is why math (especially the word problems), chemistry and physics were so difficult for me in school. However, I actually think that this part of the learning disability affects me more now than it did as a kid. Problem solving skills are a big part of adult life and something that we use every day. The fact that I struggle with problem solving often keeps me from taking initiative and taking on leadership roles. I’ve worked at trying to compensate for this but I often come home from work exhausted simply from having to work harder at these things. Spatial awareness is another thing that I struggle with due to this disability and has hindered my ability to learn to drive as well as made me a general klutz. I still hope to get my licence one day but lets just say I’ll probably be paying LOTS of money for drivers ed in order to do so.
Thankfully I have avoided many of the health challenges that come with TS such as kidney disease, heart defects, thyroid trouble, diabetes and severe hearing loss. However, there is some research to suggest that girls with TS are at a higher risk for certain autoimmune diseases, one of them, as we learned when I was diagnosed, being Crohn’s. There is evidence that this may be due to our long term use of hormone replacement therapy. Having to take hormone replacement therapy every day and realizing I will never be able to have my own biological child has been difficult, especially now as I see my friends getting married and having kids. Still, I consider myself blessed compared to the many other health challenges that some of my fellow butterflies face.
In a way, all the above challenges are what contribute to the anxiety, depression and self-esteem issues that plague many women with Turner Syndrome and I have worked long and hard to come to a place of acceptance for the way God made me. I’ll admit that some days are easier than others and I still have many moments of struggle but I am so thankful that I have my faith to guide me and ground me, giving me a sense of purpose and identity in Christ.
I’m a big believer that knowledge brings understanding which is why I choose to share my story. I know many of you have your own stories of overcoming obstacles and I encourage you to share them. Being human isn’t easy but thankfully we don’t have to do it alone. If there is one thing I have learned so far in my short life, its this: you are stronger, more courageous, and more loved than you think. May we all keep this is mind as we continue the journey.