6: My Life with Turner Syndrome pt. 2- and Gnosis

There were several hospital visits in the months after my diagnosis. I was told that Turners Syndrome would mean that I would always be short. However I knew that there was a more serious issue. I did not as yet know what it was. But I knew that there was a serious problem.

On Ash Wednesday 1984, we had a biology class. We were told about menstruation. Enough of a shock as it was! Something clicked. Somehow this was connected to whatever the unknown problem was. I asked the teacher if my having Turners Syndrome would mean that I would not have periods. She said all girls got periods. I decided to confront my Mum that evening.

When I got home Mum was cooking dinner. She was cutting up onions. I told her 'I learnt about periods at school today'. I waited for her reply.

She turned around with tears in her eyes-' You won't have periods!' I will not forget the distress and pain on her face. It had obviously been a big shock for her.

She started telling me about how TS affects the reproductive system. My reproductive system did not work properly and I would not have children.

Through all of this I remained calm. I understood that things would never be the same but it was not the worst thing that could happen to me.

Somehow I had always known that something had been wrong. Finding out was reassuring. At least I could move forward from this moment.

Ironically at this point of my life I wanted to be a nun so as I saw it I was not losing out!

One of my aunts came into the kitchen and said she would be there for me.

My mum and me sat on the settee with the rest of my family after dinner and she whispered if I understood what it all meant.

At about 7pm my Mum took me to an Ash Wednesday service. We talked in the car a bit more.

I know and appreciate that the day was deeply painful for my Mum. But it has had a major effect on my relationship with my parents that they did not let me know as soon as I was diagnosed and that I was not more involved more with discussions with the doctors. It is not a rational feeling but I do feel less respected by my parents because of this.

When talking to other women with TS it is clear that many have a similar experience of 'the day' that they found. No matter what age we were, it was not an easy day.

But what I will say to any parent is that it is better to inform their daughter as soon as possible and to get her involved with discussions earlier rather than later. It will help her feel as in control of the situation as she can and allow her to move forward with her life. She will also know how much you respect her.