I was 16 when I was diagnosed with MRKH, already struggling to dig out my niche in the world. The doctor explained to me I was born without a uterus and vagina, would require either dilation or reconstructive surgery to create a vagina, and would never have children the “normal” way. I remember crying in the car on the way home. I was stunned and scared. Then I was filled with anger, resentment towards God. For a long time I felt I was being punished. Then came the shame. I wore it like an invisible cloak on my shoulders. I can tell people I’m unable to have kids, but the words, “I was born without a vagina,” will not pass my lips. I went to a Beautiful You MRKH Foundation conference this past April in Michigan. For the first time in my life I met other women diagnosed with MRKH. I sat and listened to their stories, shared tears and laughs with them. These were my sisters, fellow women struggling with the same emotions I had. I still couldn’t tell my own story.
Keeping my diagnosis a secret was my own doing. The doctor never said not to tell and I do not remember my mom saying not to as well. But I was scared of people’s reactions. This proved true for me rather quickly. Several months after my diagnosis, I got a call from a boy down the street. He was a year or two younger than me; my brother and I had often played together with him. He said my ex-step-dad had told his dad some things about me. The boy asked if I had a “hole down there.” Luckily I didn’t drop the phone, but I quickly muttered something along the lines of “yeah, I had a hole” and hung up the phone. I then left the house and walked the 5 blocks to my ex-step-dad’s house to confront him, crying the entire way. He admitted to telling just a few people in town about my MRKH. Now, at this time I lived in a small town of about 500 people. Gossip travels fast. I was pretty sure at that point almost everyone in town knew my secret. Even if no one knew, I still felt he betrayed me by telling others about my secret. I told my ex-step-dad he had hurt me and that I would never forgive him. I cut off contact with him.
As stated earlier, the main reason why I don’t tell others the complete truth about my MRKH diagnosis is that I’m scared of people’s reactions. I’m afraid they will look at me with confusion or disgust. Or like the boy many years ago, ask me questions they have no business asking. Or, they will simply leave me. My biological father left my mother while she was pregnant with me. I grew up wondering what it was about me that he couldn’t love. If I told others about my MRKH, I believed it would give them one more reason not to love me.
Not talking about my diagnosis contributed to my depression. I felt broken, alone, abnormal, unworthy. I engaged in self-harming behaviors. At 24 I attempted suicide. I survived. It took me a few more years to realize that in order to love myself, I had to love everything. I’m 36 years old now and I’m still learning to love all of my flaws. I’ve accepted my MRKH but I’ve never fully embraced it. A year ago, I found several MRKH support groups on the web and on Facebook. Reading the stories of other women has given me the courage to speak my own words. This is me finally shedding my cloak of shame. By sharing my story I hope that young women newly diagnosed with MRKH do not have to struggle with the secrecy and shame as I did. We are all beautiful and we are all worthy of love.