First off, your hair looks great today! Look at you go! Alright, let’s sit down. You’ve been through some shit, and I want to have a very real conversation as someone who has been there, literally.
The diagnosis you got before you hit your teenage years – the one where you likely blacked out mentally because it was too much to take in, to understand, to process – willlead you on an adventure. Granted, you never signed up for it, and you are still wildly unprepared, but it will be full of self-discovery, growth, courage, connectivity, and eventually acceptance. This diagnosis will impact you beyond the physical – it will challenge you mentally, emotionally, relationally, spiritually, and it will even rattle your self-worth if you let it. I know it already has. It will force you to grow quickly, stretch yourself, and find your strength. It will also connect you with women across the globe, and make you a more caring, open, and understanding person. It will challenge you. It will change you. It will force you into all emotions (sometimes unpredictably), and it will push you to find the good in tough situations. It’s quite the journey, and I know it’s off to a really crappy start. Like, you lost your car keys, forgot your wallet at home, your phone just died, you’re all alone, you have no idea where you are… and look at that, it just started storming, kind of start.
Let’s dive into the storm you’re currently standing in – The information you know right now about your condition is incomplete at best, and at worst – wrong, poorly communicated, and full of projections about how a doctor thinks you should alter your body and live your life. You were told that major reproductive organs never developed. Missing. There would be several steps ‘needed’ to ‘fix’ this to make you a ‘real female’, and it would take years. You went through genetic testing to confirm your sex, which made you question your identity. You were never told a name of the condition or that there are other people whoalso have it. The details you did hear were maybe even more damaging – which included a list of intensive medical procedures that seemed to rival medieval torture techniques and the instructions that “once you find a husband,” you both would sit down with the doctor to figure out how to ‘fix your body’ together. You were eleven. You leave doctor’s appointments feeling shattered, likedecisions about your body are not wholly yours to make, that this body is not yours, and that the option to live a ‘normal female life’ is not in the realm of possibility. So what did we do? We buried it. Deep. Then we built steelbeam reinforced walls around it so it would never come out. You’re a problem solver. Cool, we took care of it… right? Not so fast, dear seventeen-year-old me.
We need to talk about the narrative about needing to ‘fix’ aspects of your body. This was not new to you when you got this diagnosis. Throughout the years, several medical specialists have told you they need to ‘fix’ this, and ‘fix’ that about your body to make it ‘normal’. This turned into the belief that your body needed to be fixed because your body was ‘broken’. If your body was broken, then you were broken. Reject this. Scream this: I AM NOT BROKEN.
Pick up your bible. Oh, can’t find it because you haven’tcleaned your room? I got you. Psalm 139:13-14 “For You formed my inward parts; You created me in my mother’s body. I will praise You, for I am fearfully and wonderfully made; Marvelous are Your works.” Now read it again. Now really read it. Imagine God telling you this about your condition specifically, because He is. You were fearfully and wonderfully made.
You are not ‘less of a female’ because of your anatomy. Others are not ‘more of a female’ because of theirs. Society has so many expectations about how the female body ‘should function’ and how it ‘should look’. Dismiss these narratives and the social stigmas that go along with them. There is immense freedom waiting for you when you come out of being buried by shame. Embrace your differences, share them with others, help foster education, connectivity, and understanding. We need more of this in the world.
Also, please note my excessive use of quotation marks – these are the narratives you will challenge but first, you need to reject them. They are mental trash living rent-free in your brain and they do not benefit you at all. Clean them out. God made you this way for a purpose and it’s going to be used to serve His glory. It’ll be a journey to figure out how to do that and a wild adventure along the way. You’llexperience highs and unfortunately, pretty low lows with this. Lean into your faith, you’re going to need Him and He will be your rock.
The way you were diagnosed, the information provided, and the approach medical experts took with you at such a young age will take many years to heal from. I want to help you out. The more you talk about the condition, reject the narratives told to you, advocate for yourself among medical professionals, and look for alternative options (doing nothing is also an option), the sooner the skies begin to clear and the sun comes out a bit. Find a different medical team ASAP. Seek information elsewhere. Make sure the medical decisions you make are solely for you. Care for yourself beyond just the physical aspects. I’ll save you a few years – the condition is called Mayer-Rokitansky-Küster-Hauser syndrome (MRKH) and you are not alone. Actually, 1 in 5,000 women globally also has this syndrome. That’s a lot of women. Look up the community online, its members are incredible and absolutely inspiring. Welcome, they’ll be thrilled to have you.
Those walls you built – while it may feel like they protect you, they also shut everything out and leave you numb. I know you feel alone and think nobody else in the world has this condition. There is a fabulous community out there waiting for you with open arms. Instead of having walls up all the time, start building bridges to others. Open up to people you trust, they will be a huge support system for you and will help you immensely through different stages of life. The more you speak about it, the deeper your connection with others will become and the more accepting you will be of yourself with this syndrome.
This will not go away by pretending it doesn’t exist. Against your belief, this diagnosis will also not get worse if you talk about it. It’s also not your identity. Talk about it and open up to others when you feel comfortable. Approach it from a position of strength, of overcoming obstacles, and let your path to self-advocacy shine. The women who courageously shared their story before you will be the reason you find a community. Eventually, you will have the courage to share your story with them and you’ll be met with a powerful ‘me too’ response. Never underestimate the power of a ‘me too’. With the vulnerability, openness, and advocacy of the MRKH community, you will find the path that is right for you.
You got this. You always have. You’re a badass. I’m pleased to tell you that it does get easier eventually. The sooner you start acknowledging it, allowing yourself to feel emotions, and begin to heal, the sooner good parts of the journey can begin. This diagnosis and syndrome – MRKH – doesn’t need to be your biggest secret, it’s part of you and will send you on a unique journey of a lifetime. Buckle up for the ride, but let others come along on this adventure with you. This road wasn’t made to be traveled alone.
With so much love,
Thirty-Year Old Rachel
P.s. You still have great hair.