Nicky's Story

[Received June 2001]

Hope you are all well!

I want to share my story with anyone who would like to read it. I don't even know where to begin with this message - there is so much I want to say, so many questions I want to ask and so many people I would love to have the opportunity to chat with.

About 3 weeks ago I stopped running away and probably experienced one of the most emotional weekends I have ever experienced in my life so far - I have never cried so deeply or felt a sense of belonging like I felt that weekend. I was having one of my "down days" and stumbled across the AISSG web site. I read and read for hours and hours; through the tears I smiled in knowing at last I was not alone in this cruel world.

My name is Nicky and I'm 26 years of age. It was in my first year at university that I discovered in a college medical library what my condition really was called - CAIS. It's almost been 8 years that I have carried this knowledge with me alone and wandering.

I have built this wall around me for so long - a wall where noone really can get to know me - where noone really knows who I am. To the average person I'm this intelligent, confident and attractive woman who knows what she wants. If people really knew that I'm this scared little girl with so much sadness and hurt built up inside.

I grew up in a small village and am one of five children. I love my family dearly and they mean the world to me but they are so in the dark about CAIS. Their knowledge is that "Nicky will never be able to have children - she's had her ovaries removed because of complications in the development of her reproductive system" - in their opinion this is the beginning and the end of my condition.

On discovering the web site, I downloaded as much information as I could and sent this to my mother and father. My Dad had no idea about the aspects of CAIS. To hear my father cry so sorely down a telephone line was very hard. For this reason I really want to get all my family involved. I need to do this both for myself and my family. I can't stand this secrecy, this ignorance, this coldness, this loneliness anymore.

For this reason and many more, I have already subscribed to the group and have received my first copy of ALIAS. I can't thank the people who look after the group enough. You have given me something that has probably changed my life, something to at last grasp onto, reassurance that I have been searching for for the last 8 years of my life. For this I am so grateful. I have even asked my parents to come with me to the next UK meeting and they really, really want to. The tears in my eyes at the moment are ones of relief and happiness that at last I can start a new chapter in my life.

I would love to build up some friendships with other people affected by AIS - friends/families. Please pass on my email address to anyone interested.

Take care and thanks for listening.

Nicky xx