In case you haven’t figured it out yet, I’m very open about having MRKH. I don’t try to hide it, I don’t deny it, and I do try and raise awareness with the general public.
To that end, I created the Courageous Project to help raise money for the Beautiful You MRKH Foundation. If you don’t know much about it, I encourage you to check out both my Courageous page on the website, but also spend some time at the Beautiful You page too.
So now, I wear t-shirts, I have stickers on my car, I have signs that I put up in my craft show booth, and I have magnetic signs that stick on the door of my car. They are all bright and colorful and have both the Beautiful You flower, and the words MRKH. Inevitably, people get curious – and some ask questions. Depending on the situation, I have a few stock responses.
For example, the other night on my way home after a long day at work, I took my car through the A&W drive through and ordered a large diet root beer. I place my order, pull up to the window and hand the young teenager my money. As I’m counting out my change to give him the exact…he asks, “What is M.R.K.H?” I hand him my coins and smile and say, “Thank you for asking. It’s a congenital form of infertility that affects 1 in 4500 worldwide and we are born without most of our reproductive tract.” He looks a little embarrassed as he hands me my root beer and tells me to have a nice day. I felt a little bad that I embarrassed him, but I also admire and respect the fact that he asked.
When I’m in my craft show booth all set up, with signs that highlight Courageous, different things happen. Some people wander in and look at my display and read the small framed information flyer that sits above it. It says something like “MRKH is a congenital form of infertility that affects 1 in 4500 women. At the age of 18, I was diagnosed with MRKH. On that day, my world quietly shattered. My hopes, my dreams, my plans, everything I thought I would or could do with my life…shattered. Yet, somehow my life continued. As I look back on my young life, the things I did and didn’t do…I look back at a young woman who learned to be Courageous.” And then it lists the products and prices. I watch and gauge their responses. Some just read quietly and walk away. Some ask “is this you?”. Some say “I’m so sorry”. Some share their own struggle with infertility, or of someone they know. Some say “Wow, I had no idea.“ I have a variety of responses to their comments of course – yes, it’s me. Thank you, but please don’t pity me. Infertility affects 1 in 8 couples in some form, and we should all be more compassionate. I do this to raise awareness and reduce shame. I don’t want one young women to go through the sheer isolation that I experienced, so I’m doing what I can to raise awareness.
People will often walk by my booth, see the big sign, but not read the flyer. “What is M.R.K.H?” They always draw it out…deliberate in their enunciation. It makes me smile! My response is usually, “It’s a congenital form of infertility. I was born without a uterus, cervix, or the upper 2/3rs of my vaginal canal.” Some people walk away, and some ask more questions. I don’t do it for the shock factor…I’m just open and directly honest about it. People are curious and want to learn. Some bring up uterine transplants and surrogacy. I would say that the overwhelming response that I get is admiration for what I’m doing. Respect for my bravery – my courage to speak up. Sometimes they ask if they can give me a hug. Many thank me for teaching them something. It’s all those responses that empower me to do more!
From time to time, when I’m in “Courageous MRKH” mode – I come across people who know me. Acquaintances from work, students in the program I oversee, neighbors, customers from our winery. All these are interesting interactions, as they aren’t used to seeing me outside of where they normally see me. And of course, they ask – I respond, and they go… “wow…I never knew. I mean, I know you don’t have kids, but…wow”. I smile and sometimes this leads to a pretty anatomically specific conversation. After one such conversation recently, with specific discussion of hormones, vaginal depth and dilation, IVF, and all that, this friend said to me:
“I am just amazed. I can’t believe we just stood on the sidewalk and talked about your vaginal depth, and you were just so cool and confident and answered all our questions as if we were talking about the weather. I can only imagine how difficult it was to deal with all of this as a young woman, and yet somehow you are now able to talk so openly about this all? I have so much respect for you now – not that I didn’t before – but wow. I’m just amazed.”
I smiled and said thanks, and that all I’m trying to do is raise awareness and reduce the shame that so many young women feel when they receive their diagnosis.
“I can see that, but really, Heidi – I’ve got to wonder how you learned to be so, well, Courageous?”
I don’t think it’s something you learn, I think you just make a choice to set your fears aside and follow your heart. I’m doing all of this not just for myself, but for every other woman out there who gets this diagnosis. It’s not about me – it’s about all of us.
Courage is what it takes to stand up and speak; Courage is also what it takes to sit down and listen. – Winston Churchill