Copyright Sisters For Love MRKH Foundation.
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Dear My Sister,
It has taken me a while to get here, but I am now ready to share with you some of what has been my story. I hope your journey is not too painful, but with my words you may find some comfort that you are not alone. Here goes……..
I am a 43 year old Melbourne woman and like most of us, I was born with MRKH; diagnosed at 17 when my period didn't come. My diagnosis however did not have a name back then, labelled “an unusual case”, “never seen before” said my gynaecologist. As a teenage girl that translated immediately into 'freak'. From the very beginning I withdrew into myself and fought every suggestion that I was different. My mum was forbidden to talk about it out loud and I lived in fear of people finding out about me. My father had died of cancer about 6 months before so it was easy for my mum to accept and feed my denial because the grief of the loss of him was enough in itself. The immediate response from the medical experts that poked and prodded me, was to 'fix' my vagina because it was critical that I be able to at least have a normal sex life.
Becoming sexually intrigued commenced slightly earlier before finding out about ‘my problem’,and what I now know is, that this was a trigger for a lifetime of thinking that I was not normal and sex with me would be unsatisfying. This became my focus and not being able to have children faded into oblivion. It didn't help that this was also the focus for the experts around me. No one talked to me about not being able to have children; it was all about ‘the sex’.
What followed was 'ground breaking surgery' by a medical facility fascinated by my case. I was only the third person to have this new procedure. However, no-one thought that we three young women might actually benefit from meeting one and other. By chance, I only found out that there were two other women during a consultation by the surgeon and my mother in an attempt to convince me that having my case written in a medical journal was “very important” and “okay” because my name would not be revealed. I was mortified; keeping my secret took all my energy and now they wanted to talk about me in a magazine. That decision was not legally mine and my lack of ability to talk about what was happening meant that I was not able to voice my deep objections.
My fears of being found out were constant and all consuming. I went to every effort to look like the 'easy' girl amongst my peers. I would pick up guys in bars and then have to fight off their sexual advances just to keep up the guise that I was having great sex. I was caught in a vicious cycle of wanting to appear sexually active in order to actually keep the guys I was genuinely interested in around, thinking they would run a mile if they knew I was different. I became a perfectionist in every other aspect of my life, keeping the external things in control, a high achiever and the appearance of a strong, capable and independent woman, again to affirm that there was nothing wrong with me. A love for alcohol developed as it kept me buoyant and happy and became my true friend, completely dulling my dark thoughts.
When I was twenty I did attract a man I was genuinely interested in and things developed quickly on the emotional front, which allowed for the physical side to go at just the right pace. I would like to say that after twenty years of marriage to him my story ends happily at that point, but it doesn't.
At 43 years of age I still carry the same demons that fed me from the beginning. I continue to carry in me the thinking that I am a freak and not normal. I have spent a lifetime of hiding my secret with the fear that people around me would judge and pity me. I continue to appear to be a strong, capable and an independent woman; still reliant on alcohol to free me from the deeper feelings I carry. I have never had honest and open conversations about having MRKH to those closest to me, instead I remain completely alone in my struggle. The condition had always internally defined me and who I am.
Last year, however, I finally took the steps to try and resolve this inner hatred. This is why I can write this letter today. Through the support of a psychologist I have now begun to voice my thoughts out loud. It has been a hard and arduous journey. I have tested little snippets of information to close family and friends and have finally shared my entire story with my husband. I am trying to learn to receive comfort and sympathy as tools of support and have been actively trying to seek this for the first time in my life. But it is hard to turn a lifetime of wanting no empathy, because it reaffirms the notion that there is something wrong with me, to a means of healing the hatred of myself. I continue to struggle with this. I don't know how to allow others to feel sorry for me without it reinforcing my feelings of being different. Similarly, I don't know how to retrain my inner voice to soothe and comfort me without this adding to the emphasis that there is something wrong with me. It seems the very things I need most to heal are the same things that keep me from healing.
As I do slowly move forward, however, I now know that the real key to learning how to
nurture and love myself comes from other women with MRKH. Reading about their stories and connecting with them in real life has been a turning point in the mending of my damaged self. When I see other women with MRKH and talk with them, I don't see 'freak', I don't see 'different'. Instead, I see ‘normal’ women carrying large hurts and I want to care, console and comfort them. If I can naturally do this for others, then surely I can learn to do this for me.
If I could give young women newly diagnosed with MRKH, one big piece of advice I would say seek support; make contact with other women, talk to trusted friends and family and don't leave it too long or the healing will be harder. Be aware of negative ‘self-talk’ and always, always remember - it is not your fault, you are not different, you are not a 'freak' and you need to love yourself from the inside out.
Your sister, Jodie
Melbourne, aged 43