We are our a own Normal by Nicole Hawley

Growing up, I had so many questions about myself. From as early as I could remember, I knew I was different, but couldn’t articulate why and my parents wouldn’t talk to me about it. If even they couldn’t say the truth about myself out loud, I felt that it must be pretty bad and shameful. I internalized those things and believed them. The message I got was I needed to figure out how to deal with these things out on my own- I couldn’t ask anyone about them or reveal what made me different.

Even though I was diagnosed at birth with Turner Syndrome, I didn’t find out until I was 12 at a doctor’s appointment. There’s no ideal way to get a diagnosis, but it was so much more difficult to get it from a doctor and not from my parents. Afterwards, I didn’t ask my parents any questions about the diagnosis or what it meant- by this point I knew that I couldn’t go to them to get my questions answered. I had a scar on my belly from a surgery at birth, and no matter how many times I had asked them, they wouldn’t tell me what happened. I knew they couldn’t answer my questions about TS either. I had to figure things out on my own.

A few weeks after I heard my diagnosis, I looked up TS in the encyclopedia, and learned that most women with TS are infertile. It crushed me. I went to my parents to ask if this was true and if I was infertile, and the only thing I can remember is them being upset that I looked it up in the encyclopedia and figured it out. They weren’t ready to discuss it with me, so they didn’t.

There were other things about myself that I knew weren’t “normal”, but because I didn’t have any concept about genetic disorders, I just figured that there were two kinds of girls- the “normal” kind and the kind I was. I knew my vagina wasn’t like the others, but I didn’t know I had surgery on it, so I reasoned there must be two kinds of vaginas- a pretty kind and the ugly kind I had. One day a friend made an offhand comment about how seeing her sister naked “wasn’t a pretty sight” and I thought to myself “I wonder if she has the same kind of vagina as me.”

It wasn’t until I was 17 that I was at a restaurant with my mom when she slid a piece of paper across the table. It was a surgical report from a few weeks after I had been born, but this was for a “Timothy Hawley”. As I kept reading, I realized that this was me- I was born with male genitalia, so I had been named Timothy. In the weeks following my birth, a karyotype revealed that I was an XO/XY 70/30 mosaic, and at that point my parents made the decision to have sex-reassignment surgery and raise me as a girl. The scar on my belly was from a gonadectomy. I was speechless. My mom asked me if I had any questions, but I didn’t answer. I had so many questions, but she long ago had proven she couldn’t answer them. In all the years, she couldn’t say out loud to me what I had- that I had TS, that I was infertile, and certainly not this.

This felt like another shameful secret, something else that couldn’t be spoken out loud. I was terrified of being “found out” by others. If anyone knew my secret, they would surely reject me and want nothing to do with me. This leaked into other areas of my life, too, and made me afraid to reveal anything personal about myself to others.

It’s been a lifelong effort, and I still have a long way to go, but I’m working on being more open with others and taking more risks in revealing truths about myself to others. Writing this post is another step in that direction.

I hope my story can help encourage parents to always speak to their child openly, and not treat medical issues like a shameful secret. I think one reason my parents couldn’t talk about my medical history is because they didn’t know how to deal with it themselves, and they figured that if they couldn’t deal with it, then I certainly couldn’t. But I was stronger than they knew. Kids are stronger than parents know. It would have been much easier to handle than having to uncover “shameful” secrets about myself as I grew up, and being all alone in it, with no one to talk to about it. Maybe posting this will give me the courage to share that with others some day soon. I’m ready to break the cycle of shame and silence and be more open about who I really am.

Part of that requires me figuring out who I really am- something I still haven’t figured out just yet. I think my parents set me back by never talking to me about the truth of my birth or helping me sort out my emotions, desires, etc. and what they all mean. I’m 33 now and still feel as lost as ever as far as who I really am and how to connect with others. I have hope that sharing my story will help me break through and start making connections and uncover truths about myself.

If you have any questions regarding Turner’s Syndrome and would like to chat you can arrange a call back from one of our team. Just email ragdolls.uk@gmail.com

Our information packs are also available on demand.

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