|We were sitting in biology my friend and I, listening to the constant drain of the teacher's voice, but our minds drifting off, until the word Hermaphrodite was mentioned and the whole class erupted in laughter, including myself. My friend and I discussed how weird that would be, and what a freak that person would be. Who would have guessed, 9 years later I would be explaining to that same friend of my male chromosomes and testes, this time gaining support!
My name is Kylie, I am 26 years old, and I have Complete Androgen Insensitivity. As this is my first article in our newsletter, perhaps I should tell you my story......
At the age of 11, my mother took me aside to tell me I needed to begin taking HRT, and that I was infertile due to deformed ovaries which were removed at the age of 4. The advantages were however that I won't be menstruating, or going through shaving my arms or bikini line! At the age of 11, there were better things to be done of course, and after listening, I left to climb trees. I don't really remember feeling upset at that time, however I was not good at remembering to take my oestrogen and went through periods of not taking it due to being different to others. This could have been prevented at the time, if only informed about the importance of HRT and Osteoporosis. The paediatrician we visited regularly asked if there were any questions after what my mother had informed me, and I quickly answered no, really wanting to leave before he decided to do another vaginal examination. Our family did not openly discuss this, and after the doctors' visits, it was all forgotten quickly.
While growing up I was a tomboy, climbing trees, remote control cars and racing go-karts. Growing up in the country, swimming in rivers and enjoying the outdoors. Always wearing pants and never in a dress or carrying a doll! Pink my most hated colour. My friends had the same interests as myself, until around puberty, when of course the usual discussions began of periods and bra sizes. I used to sit quietly hoping a question would not be asked, or walk away if possible. For my 16th birthday I was given a bra for a present, suggesting my absence of breasts, and of course the joke was enjoyed by all except myself. I was interested in boys, and was lucky to share a wonderful first love, with a now close friend, for 5 years. This was a great experience growing together, and was lucky to have no difficulties in any sexual aspect. I now feel at the time it was helpful for feelings of belonging, and not feeling abnormal from my peers, but also increased my self-confidence. It wasn't until the relationship was over, and I was meeting other men, that I questioned why I felt different!
Searching for the truth, I went to my home town to visit the family doctor of 20 years, only to be told that I was born a transsexual basically, and left me to walk out without any support given. Confused, Angry, and not knowing what to do, I spoke to a doctor where I worked, and was directed to Garry Warne. Thankfully, someone who greeted me with opened arms and a friendly smile, and sat me down to inform me correctly of AIS.
Finally to be told the truth, answered all the questions so simply. A feeling of relief was felt to finally discover I was not abnormal, and there were others who felt the same! A great load was lifted from my shoulders yet I hurt at the same time that a stranger was to sit here and discuss this most intimate detail of my body, and the people I trusted all my life had not! I eventually learned that my family was not told the truth either, and only fully understood when I confronted them with this. This caused alot of pain and anger and of course feelings of being guilty, for carrying this genetic trait was held by my mother. Of course this reaction was natural, however the problem I felt was that my only younger sister of 3 years also has CAIS and had not been fully informed..... I personally hold no anger towards my family for the way my situation was handled now, and understand the difficulty they faced. However I do hope this silence will be minimised eventually, which I know will bring us closer together. My family still find this topic difficult to discuss, and this I feel would have been prevented with correct counselling and medical support offered in the beginning. It is unfortunate that sometimes parents and some doctors overlook the difficulties faced by young women who do not have a menstrual cycle or pubic hair. I find this is the real source of anxiety for those of us who have to face it. I hold no anger for my gonadectomy being performed while young. I believe the doctors handled the surgery, at the time, the best way they knew how to, with the information they had known. Yet there was at no time any guidance, support or counselling offered to my parents or myself.
Living with AIS now, as a single 26 year old, I believe has made me a stronger person due to the emotional pain I have experienced. I believe it has made me more understanding and more compassionate as a person. I do not like being told I am a normal female just unable to have children, implying I am an inferior female. Who really has the right to say what is normal? I do not feel feminine at all, yet am told have a quite attractive feminine body. I am still a tomboy, and I feel this will always be a part of me. My best friends are outnumbered with males compared to females. Life is not easy, and questions are never unanswered, however at least knowing the truth I can aim forward and build my character on who I am, and hopefully help others along the path. With the stigma of feeling different and isolated no one really can develop into the person they are.
My sexual feelings are still towards men, and I hope to find someone who will understand and share my feelings. There is definitely however a stigma, with meeting a man for the first time, with nakedness, and hoping he accepts me. However this will be the growing curve of living with a condition. I still take HRT, and am at present on patches. I have recently had my bone density tested, due to a breakage of ribs recently, (don't ask!). The results are just below average, and now am working to increase this, however I realise my early gonadectomy was not the only blame for this, but my denial and neglect to take it, due to being uninformed. Having close friends to understand now my personal feelings and be able to discuss them openly has helped a great deal, and enabled me slowly on the path of self-discovery and to build my self-confidence. Just to finally be honest and myself, wow what a feeling.
Having been travelling overseas for the past 3 years, through Europe, Africa and living in London, I was privileged to attend 2 UK AIS Support Group Meetings. Having only met 3 people, when discovering the truth of my condition, I was a little hesitant, but now swear that the meetings changed my life. To feel apart of a stranger within minutes, to finally feel like you are talking to someone on the same wavelength, or that they finally understand what I am talking about. To laugh, cry and dance while revealing our bare underarms, ahhh pure bliss. I thank them gratefully. My mask was finally removed, and for once in my life a feeling of belonging was emerged.
Now back in Australia, I am amazed to see how far the support group here has come, and thank everyone who has been involved in that. The newsletter, meetings, seminars, and actual support, well done guys. For those I have met, I look forward to seeing you again, and those I have not met as yet, I look forward to meeting you. Together we can make a difference, and make a stand for intersexed people of today society.
Well best send this off, just a note to introduce myself and say HI!
KEEP SMILING and TAKE CARE!
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Last update: 22 January, 2014
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