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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Never. Ever. Settle.

“Ally, where have you been?”

This is what I said to myself last night on the bus ride home. As I continued to ‘IPhone swipe’ between my inbox and Facebook every 20-30 seconds on the humid and cramped 381, I felt this huge pang of disconnect with myself. I had this overwhelming sense that I had become someone addicted to the next email or notification, concerned at the mere chance I may ‘miss out’ or seem too ‘delayed’ in my response to an email seeking advice or support.

Aside from passing my driving test (needless to say I haven’t been behind the wheel since I took that test), I have achieved very little that is tangible and real. I am not academic, I am not particularly good at boys or cooking, I can do a down-ward dog but never ask me to run a cross-country! That is until; I created the Sisters for Love MRKH Foundation in Australia. I found my calling and lives are changing. But in this journey, I have forgotten my story. My empathy is real but I have this niggling discomfort that I am becoming an administrator of my own diagnosis as opposed to a living and breathing example of how self-love and self-acceptance can be found.

So, I am choosing to travel back and remember who Ally was before happiness and peace came, if I am to stay close to the exact cause I write about daily.

I was a self-harmer for six years. Now, bit by bit and each day, I attempt to wear shorter and shorter sleeved clothes. At dusk, I even wear sleeveless, exposing the numerous scars! In my beloved yoga studio, it doesn’t even cross my mind, for I am in the place where judgement and imperfections heal. I grit my teeth on busy trains, whilst onlookers whisper “look at her arms!”

My thoughts simply affirm that we all have a past, and my past is documented in a slightly less than conventional way.

I was someone who counted 200 calories daily from the age of fifteen to seventeen years old. At the 200th, I would eat no more. I was hungry and cold most of the time, but this was my interpretation of powerful and accomplished. I then mastered eating 2000 calories a day, an apparent and well-known ‘flip’ reaction after the hunger became laborious and perpetually exhausting.

In turn, my self-loathing during the summer following my MRKH diagnosis left me with little desire to even brush my hair. I pretended to love heavy metal music whilst sporting black lipstick- it looked terrible. I couldn’t even master rebellion well. Some may consider this predictable and teenage behavior but I was looking to destroy my appearance on the outside to mirror that of my inside.

When I was diagnosed with MRKH, there was a lot of white noise. It was like spinning around rapidly, the way children do in circles and then trying to walk in a straight line, but all day, every day. Without compass and navigation, I would just keep looking down. Researchers have likened post-diagnosis to the symptoms and behaviors associated with trauma. I spent a lot of time after treatment, roaming from friendship to friendship, party to pub. I would spend many nights in busy pub toilets crying one minute, to then wiping the mascara off my face to find someone who would make me laugh the next. “Please, anyone talk to me, make me laugh, turn the music up louder, for longer!!”

It was so very erratic and dangerous. I was a broken girl.

When I became a little calmer and older, I did discover my ‘iron’ like work ethic. One thing I did well was work ridiculously and obsessively hard. The more hours I could work, the more powerful I felt. Some weeks, I would graft for ninety hours plus during my years of managing a student bar back home in Reading, UK. The work uniform was perfect for someone who could not relate to any sense of femininity-baggy jeans and t-shirts. My hair was swept back and oily, no make-up, my hands battered and bruised from beer kegs and deep fat fryers- I was in MRKH denial heaven! No-one wanted to know who I was; most were too drunk to care and I could finally immerse myself in blaring music and lock-in’s.

Since then, I have had two ‘proper’ boyfriends. They were quite normal relationships really; TV shows, food, holidays and clothes shopping. One is a best friend and the other is now married with a child who I only wish happiness and success to. But, one of my biggest revelations and ‘ahhh’ moments came during a writing and yoga retreat I attended one year ago.

I discovered that I chose these people as partners, because in essence, they were not looking for a typical ‘woman’. I don’t mean anatomically (I had taken care if that!), but in their expectation of my role as a girlfriend. I was not looking for anyone who challenged what lay beneath. They did not want a wife or ‘want to be mother’ and I didn’t know how to be either of those. Sure, I told them about the diagnosis but with as much meaningless expression and disassociation as possible. I think this was part of the trauma. It was awful.

And I look back feeling quite sorry for that girl who was so, so lost.

I write this blog now as a single woman – I have taken a pledge with a best friend to find one lunch-time per week where we are to buy one, simple ‘girly-gift’ for ourselves. Just for one day, we are to lay down our warrior gauntlets and nurture the repressed femininity and soften into our blonde locks and blue eyes without weakness or question.

My acceptance is precious. My body is precious. I don’t ever want to be that girl again. Acceptance has been defined as to ‘find rest in’ or to acknowledge a process without protest and if I could add, to simply find a way to look at the pain, and to follow up with love and forgiveness for being so hard on ourselves. Pain, then love.

I wish that I could be there for everyone’s diagnosis and steer them away any form of shame or self-hatred. I wish I could correct people’s stares and unwanted silences, however, we are not to judge those silences; people are doing the best they can with this unique information that we are choosing to share with them.

I do feel sad remembering what happened. But I am a girl with MRKH, sorry, a woman. And like I said two years ago, Becoming Ally was the best thing I ever did. And I cannot wait to see where she takes me next.

A word for all those who are sitting with this reality, never, ever settle!

-Ally

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Celebrating 11 Years Of My MRKH Diagnosis

Krystina pic 1
It’s midnight and sure enough, Rosie wakes up. She needs a diaper change and a bottle, followed by some cuddles and then it’s back to sleep. From then until around 6:30 AM, we may wake up once or twice…or possibly as much as 4 or 5 times. Each time she wakes, I’ll follow the same routine.

We usually wake up and start our day around 8:30. She plays and has some water or juice, and I lay on the couch waking up until I can manage to operate the Keurig. Coffee has become my life force!

Our days are so busy…giggles, playing, eating, obeying all the whims of a toddler. We are at 15 months and I have no idea where that first year and some change went. I know it went too fast. Just as we hit one stage, it seemed like it was over and a new one begins.
Krystina pic 2
At the end of our day, she has a bath. Rosie loves bath time! It’s followed by pajamas and more play time, until she decides she’s tired and comes up to me and says “night, night” in a very desperate way. We have our snuggles in the rocking chair with a bottle until she’s asleep, and then the evening is mine.

I’ve never been so tired and busy in my life! There are moments when I question what I’ve done, but they vanish as fast as they come because I look at her and I’m overwhelmed with the love I have for her.
Krystina pic 3
 
MRKH doesn’t have the right to dictate or decide our life. WE get to do that, end of story. None of can look into the future. I know I was certain I would never have a child. We have an amazing adoption story, and it’s a special one. Being a mother is the most amazing thing I have done, but it doesn’t define me….just like MRKH doesn’t define any of us.

MRKH is a part of us, just as being Rosie’s mother is a part of me. There’s so much that makes up who I am. There’s so much that makes up who you are. Have faith, my dear Sisters. When we lose faith and hope, we lose everything. Don’t give up.
-Krystina

Dx 16, now 27

*Celebrating 11 years of MRKH diagnosis*

Krystina pic 4
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MRKH Monday: Give Back with Giving Tuesday! #MRKHmonday #GivingTuesday

Here is your weekly MRKH news recap.

Tomorrow is Giving Tuesday! Giving Tuesday is a global day dedicated to giving back! On Tuesday, December 2, 2014, charities, families, businesses, community centers, and students around the world will come together for one common purpose: to celebrate generosity and to give. Please consider donating to the Beautiful You MRKH Foundation on this special day, so we can continue to support women like you! Donating is easy, every dollar counts and it’s just one click away! Click her to donate: http://www.beautifulyoumrkh.org/Donate.html #GivingTuesday

Current Survivor contestant and Miss Michigan 2013, Jaclyn Schultz, encourages others to donate to the Beautiful You MRKH Foundation for Giving Tuesday here: https://www.facebook.com/photo.php?fbid=387065598118189&set=a.104444676380284.10995.100004442556061&type=1&theater

Jaclyn Schultz and her fiance, Jon Misch, mention MRKH on CBS’s Survivor! Watch the clip here! https://www.youtube.com/watch?v=rURcIcQXVJA&feature=youtu.be

The Sisters for Love MRKH Foundation are very pleased to announce that the 4th MRKH Support Group Meeting has been scheduled for Saturday 28th March 2015. This meeting will be held at The Royal Hospital for Women, Sydney. For more information, please visit their website: http://www.sistersforlove.org/events-and-news.html

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Nothing Can Make You Feel Inferior Without Your Consent

There are many things in life that cannot be changed. Your height, blood type, and shoe size are great examples. There are also many things in life that can be changed. Don’t like your hair? Change it! Is your job making you miserable? Find something new! MRKH can fit into both categories. While we can’t change the way we were born, we can change our attitude towards it.

My MRKH and I have not always had a great relationship. As a teenager struggling to fit in with my peers, my diagnosis felt like a slap in the face. There were many feelings that constantly raced through my mind as I attempted to wrap my head around exactly what being a woman with MRKH meant. It seemed clear to me, at the time, that having MRKH put me in an abstract ‘lower class’ of woman. I didn’t even question my place in this sub-level of womanhood. It was where I fit, where I felt that I belonged. And as time passed, I became comfortable there. Not because it made me happy, or made me feel good. I became comfortable considering myself a second-class woman because I had convinced myself that it was true. I would even joke about it among friends, telling them “I’m not a real woman anyway!” with a smile and a quick flip of my hair, whenever some sort of woman subject I didn’t understand came up. Nobody questioned it, not even myself. After all, I belonged there, didn’t I?

It didn’t take long for that negative view to begin to wear on me. My solid belief that I was somehow not as good as those around me affected many areas of my life. In relationships I was constantly on edge, waiting for the man I was dating to realize his mistake in dating me. At work I lacked confidence, and never saw in myself the capabilities that others saw in me. I developed an almost demanding desire to be complimented, as if trying to drown out my own insecurities with praise from the outside. It was so much more than “tell me I’m pretty”. It was “tell me I’m worth something, because I can’t see it for myself.” I felt like no matter what I did, I would never be good enough. And it showed, in so much of my life. It’s interesting, when you look back at a drastic change in your life and are unable to pinpoint exactly what caused it, or how it came about. I can’t explain why, or how, or even exactly when I decided I was tired of continuing living my life feeling that way.

It was as if I opened my eyes one morning and thought “not having a uterus doesn’t make me any less of a person… of a woman… than someone who does.” A mind-blowing revelation to someone who had lived for years thinking exactly the opposite. But as the minutes passed I went back to that uncomfortably comfortable feeling of worthlessness. And the next day I woke up and thought, “not having a uterus doesn’t make me any less of a person… of a woman… than someone who does.”And I stuck with that feeling a little longer. And longer and longer, as the days passed, until one day I found myself not questioning my womanhood at all. The days of positive thinking began to outnumber the negative days, and I felt an inner glow begin to shine out of me and pour into my life. Things changed, my confidence grew, my smile brightened.

To me, an important part of changing and growing is understanding where you used to be. The more I thought of that time in my life when I viewed myself as second-class, and just overall less than those around me, the more I realized that the only person holding me there was myself. Nobody told me I was less of a woman because I had MRKH. I told myself that. It was never mentioned to me that my womanhood should be in question. But I questioned it all the time.I was never told that I was subpar from other women, just because they had a uterus. But I felt that way every day. For years I allowed those feelings to take over, to latch on and control my thoughts until I couldn’t see any other way.
I allowed them to be there, and so they stayed.And it was only when it all became too much to handle that I started pushing against them, trying to drown out the lies with what I had always known was the truth. Had always known, but could never accept.

Having MRKH doesn’t make me anything other than strong. It doesn’t make me less of a woman. It doesn’t make me undesirable, less beautiful, or subpar to anyone.
I have MRKH, and I am just as amazing, unique, and worthy of love as any woman without it.

-Kristen Peterson

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MRKH Monday: Hope for MRKH sisters in Africa! #MRKHmonday

Happy Monday everyone! Here is your weekly update:

Do you life in Africa and want to connect with your MRKH sisters? If so, you are in luck! The Amazing You MRKH Africa is being formed and has filed paperwork to become a non-profit organization. We want to congratulate you on your hard work and we wish you the best of luck! Learn more about the group here: https://www.facebook.com/groups/amazingus/

Please read this great post about how one woman deals with having MRKH by clicking on this link: http://hellogiggles.com/mrkh-syndrome

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Every Woman’s Platform

Carly model pic   carly - miss mississippi

It was not until I was given the opportunity to compete in a state pageant that I could finally establish my platform. I was ecstatic because I felt as if I were finally getting somewhere with my advocacy and I could make a change even if it were small. My platform was justified by the story of a woman who had reached out to me through my contestant profile. She had told me that what I was doing was amazing and that, finally, somebody was using publicity to shed some light on MRKH. My heart shattered into pieces when she told me her daughter, who was diagnosed with MRKH, had recently committed suicide because she had nowhere to go and no one to talk to. This is the exact reason I have chosen to promote MRKH as my platform, not only for this pageant, but also for life.

I never want another girl to be so in the dark about this diagnosis that the only way out is to take her own life. I feel as if I was so close to that decision because I was so lost as well, to the point that I thought I would never be able to call myself normal again but when you think about, normal is boring. I’m so incredibly thankful for the Beautiful You MRKH Foundation because they showed me how amazing abnormality can be. I’m different and I love that because now I have a reason to show women why being different is life changing.

Without these anomalies I would be way too normal for my liking. The point of my platform was to prove that medical obstacles could be beautiful. They can produce beautiful strength and confidence that you never knew you had. Although I did not win, I will not stop proving to women that femininity does not come from reproductive ability. It comes from the confidence within you, how you perceive yourself, and who you see when you wake up in the morning and look in the mirror. That perception of you is not something you are born with, but something you create yourself. When I look at myself in the mirror I see a young woman who is happy with her life’s difficulties because if I did not have these then I would not have this determination and if I did not have this determination I would not have had the drive to compete in a competition in which I could make them my purpose.

I owe every bit of my happiness and acceptance to BYMRKH because this foundation has shown me the success I am able to achieve and that there is life beyond the diagnosis. I encourage every woman diagnosed with MRKH to make it her platform and use it to empower anyone they come in contact with. These obstacles are meant to drive us even further in life as opposed to slowing us down. I will not stop until every woman with MRKH is shown the greater good that can come out of it. As you read this I hope you realize that the power to empower is within your capabilities. Be the voice and the inspiration because you can save a life without even knowing.

-Carly

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