The Power of ‘Coming Out’

My name is Mell, I am an 18 year old living in Australia with MRKH syndrome and this is my MRKH story.

My journey with MRKH syndrome started just over 2 years ago now when I turned 16. I remember when I was 12; my best friend came to me one morning before school terrified telling me she had started her period. At such a young age it was such a daunting thought and so hard to understand why it happened. As I got older more and more of my friends started getting theirs too. I didn’t think anything weird about not having mine until I turned 16 and it still hadn’t started. I was growing impatient of not getting it yet. I know that would sound so weird for most women to hear but it’s true. I just wanted it so I could feel normal and experience what every other ‘normal’ girl my age was experiencing.
I spoke to my mum about it and how I thought it was really weird that every other girl in my class had got it and I hadn’t. I went to my regular GP and she then referred me to a gynaecologist. I went there the next day and after the examination he knew something wasn’t completely right. He then sent me for more testing until I was then referred to a specialist in Brisbane.

The 19th of July 2013, one of the most confusing, heartbreaking and life changing days I have ever experienced. I remember sitting in the doctor’s office with the doctor and mum and her explaining my condition. It all seemed fine to me and I didn’t really piece together what not having a uterus actually meant. It wasn’t until mum asked if I would ever be able to have kids that it really hit me. The doctor replied no and from that point on I just went into a frozen state. I just sat there and smiled with no thoughts in my head. The 4 hour drive home was the longest and most painful 4 hours of my life. I had just been told that I would never be able to naturally conceive children. It was a lot to take in for a 16 year old girl.

The next couple of months after my diagnosis, I didn’t really think too much about it. I pushed it to the back of my mind and just forgot. Then towards the end of 2014 it kept creeping more and more into my mind and I started dwelling on it more. Then towards the end of the year, over Christmas, I went back to my home town to see my family. My brother and I started watching a movie called ‘Lucy’. There was a scene in this movie that has stuck in my head ever since I saw it. A character in the movie, Professor Norman, is running a seminar about his perception on life and the human race. There is one part of his speech that really stuck to me:

‘For primitive beings like us, life seems to have only one single purpose: gaining time. And it is going through time, seems to be also the only real purpose of each of the cell in our bodies. To achieve that end, the mass of the cells that make up earthworms and human beings, has only two solutions. Be immortal, or to reproduce. If its habitat is not sufficiently favourable or nurturing the cell will chose immortality. In other words, self-sufficiency and self-management. On the other hand, if the habitat is favourable they will choose to reproduce. That way, when they die, they hand down essential information and knowledge to the next cell, which hands it down to the next cell and so on. Thus, knowledge and learning are handed down, through time.’

I don’t know if it is just me but for some reason this hit me hard. I even watched it again a few times to really listen and understand what he was saying. I don’t know why but it really made me think of my life and MRKH. I didn’t feel normal, I didn’t feel human. He said that the reasons humans are on earth are to reproduce, something I couldn’t do naturally. Ever since that day for the next few months I had the constant thought of it in the back of my mind.

I then went through a very tough time trying to cope with it. I couldn’t go a day without thinking about it. When I was alone it was all that was on my mind. I was living away from my family too which made it even worse. My mum was the one person I could open up to the most about MRKH and not having her there by my side with these thoughts in my head was so so painful. I would just randomly break down crying from the thought of it. For people without this condition I completely understand how it could seem like a bit of an overreaction, but it is such a real thing for me and any other lady with MRKH.

It wasn’t until mid-January this year that I realised I needed to stop letting the negative thoughts control my life. This is when I discovered the lovely ladies at Beautiful You MRKH foundation. It was so good to be able to meet and talk to other people who were going through the exact same thing as me. It was so inspirational to see how far some of them have come and it gave me a special drive to reach the same level of confidence as they had about MRKH.

I began talking to more and more ladies with MRKH. And the more that I spoke about it and the more women I met going through the same thing as me, the more my confidence grew about the subject, until I finally felt ready to open up about MRKH to all of my friends and family and I took the leap! I saw a post from the Beautiful You MRKH Foundation support forum seeking volunteers to fundraise for them to raise money and awareness for Give RARE Day. Give RARE Day raises money and awareness for non-profit organizations that support rare medical conditions. I posted a status with my story and asking for people to donate to the Beautiful You MRKH Foundation. The support and love that I received from my friends and family was nothing short of amazing. This was such a big achievement for me, opening up and being proud to be a MRKH warrior. And the best thing for me was that I didn’t care about what anyone else thought about it, or if anyone was judging me for it because I knew I had the endless support of my family and friends as well as my amazing MRKH sisters.

After finally ‘coming out’ about my condition I felt like a massive weight had been lifted off of my shoulders. It changed my whole outlook on the situation as well as MRKH. I no longer felt alone and ashamed, instead proud to be part of such an amazing and inspiring group of women. The support and love that is shown by members of foundations such as BYMRKH is truly incredible. Women that have once faced the same problem as me are standing tall and proud of their condition and empowering others to as well. It has inspired me and made me want to help other younger females through the tough times that come with MRKH, to help them see that they are different in such a special way.
I know that my MRKH journey has only just begun, and the start wasn’t all that great and I know that there are going to be plenty more ups and downs, but that life and you need to push through the bad times and let the good times shine. Living with MRKH is not easy, but with the amazing support that comes from the MRKH sisterhood and my amazing family and friends I am no longer scared of MRKH, but have learnt to embrace my differences and be proud of them and I hope my story can help other women see that there is a happy ending to the darkness that comes with diagnosis.

Thank you for reading my story and I hope you will consider supporting me on my first step on ‘coming out’ with MRKH and helping other women with MRKH by clicking on my personal fundraising page and donating to the Beautiful You MRKH Foundation. ‘Coming out’ with having MRKH was a huge life decision, but I couldn’t have done it without the support, encouragement and inspiration of the Beautiful You MRKH Foundation and the sisterhood they provide for women like me around the world. Beautiful You has given me the strength and courage to share this part about myself and to realize that there is no shame in having MRKH and has given me the confidence to know that I am no longer alone on this journey. Please consider donating here: http://giverare.razoo.com/story/Mell-Schmeider-Bymrkh

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5 Responses to The Power of ‘Coming Out’

  1. Reblogged this on travelingeneticist and commented:
    What a moving post written by Mell, an 18 year old who just ‘Came Out’ with her MRKH diagnosis to her friends and family. Because of the support of BYMRKH and other women with MRKH, she created a personal donation page through our Give Rare Campaign. Mell, you are already changing lives of women with MRKH. Telling your story will give others the courage to live their lives free from shame and isolation.

  2. Great post, Mell! Thank you for telling your story.

  3. My daughter is going through this right now. Is there more information?

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