A European TS Story

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Hello, my name is D (I won’t bother you with my real and hard name) and I was born in Lithuania (I offer you google it, but I am telling you it is not Africa – EASTERN EUROPE). As you can guess I have Turner Syndrome. This is an essay about me and the totally normal life of a 17-year-old girl. When I was baby my parents and doctors saw my puffy feet. I am grateful for a doctor who recognized this. Lithuanian doctors then told my mother I might have some disabilities. They suspected I could be mentally challenged. After months of trying to figure out what is wrong with me my mother had a diagnosis: Turner`s Syndrome. I cannot emphasize enough how it is hurtful to hear my mother saying that she and dad cried when she first found out about Turner syndrome (I read a lot of stories and even TS girls have cried after hearing this, so I do not blame them). I can imagine it broke their hearts. Those pictures doctors show are  really scary. My parents always kept my condition in secret even from me till I was old enough (I do not remember the exact time).

I remember the doctor saying these hurtful words: “height disorder”. Maybe it’s because of these words I understood why I had to get growth hormone shots. By the way, till this point in life I had high self-esteem. I was even maybe a little arrogant. I think the best decision about TS from my parents was not telling me as a kid every detail what was wrong with me. My mom was a good support system throughout my life. I am very thankful to her that she never stopped take care of me. She usually was the one who took me to Kaunas Hospital (80km or 50mi from my home) and to all doctors. She would always listen to my problems; even now. On the other hand, I am thankful that she did not stop caring about herself. When I was 2, she opened a business. Yes, sometimes it meant being without my loved mother, but I always had dad. She was a good mother who always took care of me.  At around age 6 I was told  about Turner syndrome in the most harmless way, because I do not remember any detail – it was not a trauma for me. My mom asked me not to talk about it and keep it a secret. I had a really good friend, her name was J. At that time I called her “best friend.” And do you know what she thought? I actually wondered about “how I am not going to tell her?”, or maybe I just wanted someone to talk about this with who was my age. Kids do mistakes – telling her the truth was mine. I remember talking to J. and another person (I don`t remember who it was). My friend told the other person the truth about me. I asked her: “Why did tell her/him that?”. The answer was shocking: “Why not? Everybody can see you are different”. I have no idea why I was friends with her till 6th grade. I was not close with a lot of peers and she was one of the closest at that time. At age 11-12, she started to talk about periods, bras and other girly stuff. At this time, I have not started estrogen therapy, so I could not talk about this. On the other hand, my kidney problems gave a possibility of not going to PE and this helped for me to get through the difficult period where girls started puberty. I remember crying for the doctor to excuse me from PE for 7th grade. Honestly, middle school (so far) was one of the hardest moments in my life. I stopped talking with J and another friend. At that point, I felt so lonely; so different. I almost felt like a freak. It was not like I did not have friends at all but middle school was a constant change of friends. Even though I lived at the same city I did not feel close to them at all. In addition, at one sleepover my friend said: “I know something is bothering you, what is it?”. Sadly, I could not say it was Turner’s because at that time my mom would be fine to say it, but  it was already tabu for me. My “lovely” classmates just simply rejected me. My self-esteem was the lowest it has ever been. I guess that was why I was ready for two cosmetic surgeries (dropping eyelids). Right now, I don`t regret that I did one of them. The first one was a failure and  all I see is a scar which is still visible for me (not for others though). Only problem: that  it is not fixed and I was not ready for another surgery.

I have medicated just as other TS girls do. I had growth hormone. From age 3 to 14 I was tortured every evening with shots. Honestly, from age 9 when I gave my first shot (instead of my parents) till the last shot – evening was not fun. I always had bruises on my legs because my hands were shaking. In addition, I had other problems because my parents still made me be silent about TS. If I was gone for one or two nights I would usually miss shots, but when it comes to vacations – it is not possible. One summer on vacation near a lake, I would go downstairs when everybody is in bed. Or when I was in the  hospital and  it came time for my shot, a  nurse  would be curious and come. The nurse asked to leave, but one girl from the little city was there (oh my God, what if she will tell someone…). In addition to that, I had to take pills because of my kidneys. It was nothing, except for the bad taste every evening (I outgrew this problem just as I did the growth hormone). The other embarrassing thing, if you are hiding TS from others, is a patch in the evenings to begin puberty – you have to put something on your belly. Finally, my part is done and I am drinking only a tasteless pill of estrogen. All this medication was important (in my opinion) to feel  similar to your peers. Now, you would not see anything wrong with me except for short stature. I mean, I am a great student; I can speak two languages fluently at this point of my life. I am almost done with stressful high school years (only senior year left). I have moved a lot after my parents got divorced. From the small city I moved to a big city in Lithuania. This year I finally moved to the  Chicago suburbs and I feel great after my hard sophomore year. Luckily, even if I felt different and it was stressful I made a few wonderful friends everywhere (even a few with no TS). Yes, I am different. That  is not always bad thing. I was brave enough to meet my biggest fear and confess why I am different. You cannot hide it from society, because it kills you inside. What happens when you do? You feel more different because you think you cannot talk about it. One day I thought: “OK, I am done. I need to talk to someone who actually gets me.” So, I went on google (now I get that I just should have typed Turner Syndrome in Facebook, but I was not so smart then) and found Colleen’s page. I chatted with her and she asked for me to join some Turner Syndrome groups. Honestly, I still was afraid that even someone without Turner`s would see my posts. Well, what I did was this: I joined a bunch of Turner Syndrome groups, created a small one for Lithuanians (they are meeting for the  first time in history because of a good doctor who recognized us). Till this point I met only one TS girl (Lithuanian), but I love her as a sister. I chat with others TS sisters everywhere!  Finally, after two years my mom let me break silence ( thanks to American TS girls who showed not to ashamed of who I am)  about TS. I know my mom wanted to protect me – but then it is too much protection and  you want to shout and tell the world about it. Well, I just did! 🙂

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