“I would rather get to fifty, know I gave it a shot and it didn’t work out instead of doing nothing and wondering,” says Kelly Smith, the inspired founder of MRKH Connect, an organization designed to raise awareness about and connect people with the MRKH: Mayer Rokitansky Kuster Hauser Syndrome. This medical condition impacts 1 in every 5,000 girls, affecting the reproductive system. Kelly’s diagnosis sent her reeling, among the many feelings she grappled with were those of isolation and invisibility, until she simply decided: not cool. She and her best friend built MRKH Connect to bridge the social and informational gaps for people with this condition and to create outreach, resources, and most importantly dialogue and belonging. “When you get that email that says you made a difference,” says Kelly, “THAT makes all the difference.”
If you could describe yourself in one hashtag, what would it be?
Tell us about a girl in your life who rocks.
My best friend, and co-founder of our website, MRKH Connect. She is my rock, my inspiration and one of the main driving forces behind setting all this up. Living half way across the world is the most difficult part of this friendship, but despite all that, she is there at every moment. She never stops giving and helping people in her life. She is brave, beautiful, kind, and inspiring. She pushes me to be better every day, and to achieve all that over Skype alone is pretty impressive!
What are your dreams/goals/ambitions?
I would love for MRKH Connect to be known worldwide. The “go to” place that doctors send newly diagnosed patients, so they have an immediate place to go to and find connection with someone going through the same. I want to be a part of the reason why someone decided not to give up.
What are you most proud of?
I am proud of a few things in my life. But the thing that comes straight to my mind when someone says the word “Proud” is my MRKH sisters. This condition is different for every woman, but I know many that have spent years in silence and recently opened up to loved ones, friends and family about their condition. And I am SO proud of them for taking that step, because in my eyes, it is one of the biggest.
What piece of advice changed your life?
“The rest of your life is being shaped right now” After a couple of years of self destructive behaviour, after my diagnosis, I read this somewhere and something just changed. I was in a place where I could see more clearly, and I understood that if I didn’t change my behaviour, my outlook on the world, my happiness, then I would never make it out of that dark place. It pushed me to change, along with the insurmountable support from my family and friends, and I couldn’t be in a better place.
Where do you see yourself in 10 years?
In 10 years I would love to be running MRKH Connect with my friend from a beach hut in Thailand! I can only dream! And if that fails, I would love to be working on it from anywhere in the world, even the confines of my bedroom like I am now.
What is the number one item on your bucket list?
Travel. I spent a year away in Australia and I had the best time. I love seeing new places, experiencing new things and learning about different ways of life. There is so much to see in this beautiful world, and if I don’t take that leap again I know I will regret it. Oh, and also to re-watch every episode of One Tree Hill again.
Who has been the biggest female influence in your life and why?
I have many great female influences in my life. But one that I never give enough credit to is my little sister. She is a complete breath of fresh air. She lightens the mood wherever she goes and she is always there with a shoulder to cry on, an old family memory to make me laugh, or a clichéd piece of advice (which is my favourite part!) When I told her (well, when she read about) my condition from the other side of the world, she supported me. And when I finally made it home, nothing was different, and all along that is all I ever wanted. To be exactly the same as before. And she succeeded in doing that for me and I love her for it.
What is the biggest risk you’ve ever taken and what did you learn from it?
The biggest risk I ever took was deciding to share my story. I wrote a blog about my past, my diagnosis, and every thought that crossed my mind. And I posted it on Facebook when I was in my little Bondi flat. I finally bit the bullet and faced the thing that scared me the most in the world. For years I never said a word about it and how it affected me. I was embarrassed of the condition, I was ashamed, and I was petrified that people would judge me or see me differently. But I did it anyway. And I could not have asked for a better, kinder response. I had messages from people I hadn’t seen for years. Messages from people that were in the same position. Messages from ex-boyfriend’s apologising for things beyond their control. It was overwhelming to say the least. But it taught me the best lesson of all. People will still love you no matter what … Because those who mind don’t matter, and those who matter don’t mind. I learnt that it was okay to embrace my life, accept this condition as a part of me, but not the whole of me. I learnt that it needs to be talked about, the stigma needs to be diminished and people need to realise they are not alone. Since then, I have created a website, set up a charity and appeared on two national television shows to spread the awareness. And that is just the beginning!
Why are you THAT GIRL?
I am THAT GIRL because I didn’t give up. There were times when I came close, sometimes a little too close, but looking back at it all now, I realise I had to be in that place to make it to this one with a little grace and empathy. I am THAT GIRL because I choose to be. I am lucky enough to be able to make the decisions in my life, and that is something I will not take advantage of ever again.
*Interview conducted and compiled by Sheila Moeschen, IATG Senior Editor