It’s been 14 years since the day I was diagnosed with MRKH, and I could still recite that day to you moment by moment… but that might take a while, so I’ll start by sharing just one very vivid memory I have of myself on that day. I was standing on a busy, bustling street in Dublin, Ireland, where I’m from. I remember seeing all these people and cars rushing past me: a woman in a suit walking with purpose like she was going somewhere important, lots of people moving at pace looking like they had somewhere to be, a mother zipping up her child’s coat as they stepped off a bus and got ready to embark on their day, a group of friends just casually walking, chatting and laughing as if they didn’t have a care in the world. So many little moments that showed me the stark reality that other people’s worlds had kept on turning while mine had stopped.
It was like I had spent 17 years of my life weaving this web of intricate connections with things that mattered to me: family, friends, people I cared about, school, hobbies, interests, hopes and dreams for the future. Then one moment in a doctor’s office, being told that my body was not what I thought it was, shone a spotlight on the fragility and delicate nature of that web. It only took four letters to dismantle the web; MRKH destroyed it as quickly as and easily as you would brush away a spider’s web in your house.
One sentence was all it took to disconnect me from the world, the people around me, my body, myself. If you’ve every watched a spider spin a web, it’s fascinating to see how fast they can create such a beautiful structure within moments, like they know exactly every step to take to get them to where they want to be. But I didn’t even know how to take the first step; I didn’t know where to start. I could see people, but I couldn’t reach them and I didn’t know how to let them reach me. I knew what I wanted (or at least I thought I knew what I wanted), but I didn’t know how to get there. All I could think about was finding a way to make it go away so that I could go back to being the person that I was before, to being like those people I saw chatting and laughing on the street, without a care in the world.
Despite my greatest efforts to get a refund on my ticket to the MRKH club (excuse me… I think you’ve given me the wrong one… you see, I was supposed to be in the period club), I never did find a magic wand to wave and make it go away. So then I tried to find my way through it; almost like finding your way through a maze and coming out the other side, not quite knowing how you got there, but not really caring how you got there because you’ve got this new freedom where you can leave the maze behind you, never look back, and go and do whatever your heart desires.
But then while I was trying to find my way out of the maze, I met all these other people who were in the maze too. Some of them had been there for a while, and others, like me, had just gotten their ticket. We were all given our ticket to the maze in a similar way – sitting in a doctor’s office being told that our bodies were not what we thought they were, but we had all come to the maze from different places: different parts of the world, different cultures, different belief systems, different family backgrounds and life circumstances. So being in the maze meant something different to all of us; it impacted our lives in different ways, and we all had our own ideas about the paths we needed to go down to find our way through. But we all had one thing in common; we were going to be in the maze for a while, and none of us knew about the shortcuts to get out. We all tried to get through it in the best way that we knew how, and while we often chose different routes, we also crossed paths and learned from each other along the way.
Lots of us started by facing into the same path: the one that was filled with grief, loss and sadness. At first I was afraid to take a step onto that path, so instead I searched endlessly for the escape route – the secret passage to joy. When I had exhausted the paths that all led me back to the same spot, I started to learn that the only way to re-connect with happiness, excitement, joy, was to allow myself to feel pain, and to realise that one didn’t cancel out the other; that life is filled with moments of pain, laughter, joy, sadness, feeling connected and disconnected all at the same time. When I gave myself permission to step onto the path of grief and loss and just sit there for a while, to get acquainted with my surroundings and savour the scenery, all of these other paths started to appear. So I began to explore them, not quite knowing where they would lead, where I would end up, who I would meet along the way, or if I would like the view. I was scared, but I had explored every inch of the pain path, so I decided to venture out of it and try some of the new ones anyway, knowing that I could come back to that place I knew so well if I needed. As I meandered through the maze, I found myself circling the same spots, got lost a few times, took some wrong turns and some right ones, saw some beautifully unexpected scences and made some discoveries for myself. But my discoveries alone weren’t enough to find the way, and for a while I was afraid to ask for directions; I didn’t have the words to explain how I got here or where I needed to be. I dodged as many people as I could… I didn’t think they had much to offer. After bumping into more and more people over time, I took a risk started to stop and chat, not quite expecting the guidance and wisdom they imparted.
Before I felt brave enough to speak to anyone with MRKH, I saw someone walking towards me; a nurse, called Phaedra. I think she must have noticed I was lost. She approached me with such warmth and kindness, sat down beside me and told me that I wasn’t alone. I can’t say that I fully believed her at the time, but I think there was a little part of me that listened, and opened myself up to the possibility of what other people had to share.
Then I met a woman called Esther. I heard whispers that she was the first person ever to advocate for MRKH, and I remember thinking that I could never do that, I would never do that. I listened intently as she reflected on a piece she wrote, aptly named ‘The Missing Vagina Monologue’. She spoke with such passion about learning to feel comfortable in the body she had rather than the body people thought she should have. She challenged my idea of what I thought my body had to be, and taught me that learning to live with MRKH was not about fixing my body, but about finding a way to feel comfortable within it.
Then I met this doctor, Dr Laufer, who echoed her words. He was the first doctor I met who highlighted to me that MRKH was just one part of me, and that I could make a decision about the steps I wanted to take that fit best with my life. He had this way of making me feel safe. He told me that choices about my care were mine and mine alone, and that it was okay to take it at my own pace, or not to do anything at all. We all make different choices about how we want our bodies to be, and whatever we decide to do is okay.
Then I met Amy, Ally, Jaclyn and other people who spoke openly about MRKH. They taught me that I didn’t have to hide MRKH if I didn’t want to, that I could be part of a ripple effect of providing support to people with MRKH around the world; I could advocate, I could build connections with doctors and nurses, I could be the person to build the support network in Ireland that I didn’t have when I was diagnosed.
There was this ray of sunshine called Sunni, and she taught me how to laugh about MRKH (and trust me, I really didn’t find it funny… at all). She had this way of bringing a lightness to something that felt so dark. Our many conversations together also taught me that not everyone knows how to respond when you tell them about MRKH, but it’s okay to tell people what you need from them, to allow them to get it wrong sometimes, to encourage them to ask questions, and to realise that they might even surprise you by being open to it in a way you didn’t expect.
There was a person called Erinn, who is a therapist like me, and we had a wealth of rich and interesting conversations about marrying together the personal and professional; how our professional experiences met our personal insights and vice versa. We talked a lot about taking care of ourselves and each other, tuning in to how we feel when we’re walking through different parts of the maze, and knowing that it’s okay to sit down and rest for a while.
Later I met Wani, Badia, Hasna and Aysha, who taught me about what it felt like to have MRKH in different cultures, and how we need to do more to support people with MRKH on a global scale. They taught me to listen and learn from experiences that were different to my own.
And then I met Charlie, who worked tirelessly to make it possible to connect at a time when we all felt disconnected.
As well as the people who spoke openly about MRKH, I also saw so many others (who I won’t name in case they don’t want to be named), who quietly connected with each other, offering a listening ear, a comforting word, a hand to hold. I watched the web of connections build in person and online, and was moved by how committed people were to offering support, to approach another with warmth and kindness and let them know they’re not alone. I saw such beauty in this community of people that I once didn’t want to be part of. I saw people connect through MRKH, and I also saw people doing wonderful things that brought meaning to their lives that had nothing to do with MRKH.
So when I first got my ticket to the maze, and realised I couldn’t get a refund, I wanted to run as fast as I could through it to find my way out. But 14 years later, I think I’m still in the maze, and I imagine that I will be for the rest of my life. Somehow it doesn’t feel so scary anymore… if 2020 has taught us anything, it’s that we don’t always know what’s coming around the corner. And sometimes that is frightening, but other times it brings exciting opportunities: to explore paths in your life that you didn’t know mattered to you, to connect with special people who will teach you so much about yourself and the world that you wouldn’t have known without getting the ticket you were given (even if it did look like the wrong one).
You may be reading this from the beginning of the maze, searching for the escape route or feeling afraid to step onto one of the paths. Or perhaps you have been here for a while, and you don’t quite know which way to go next. Wherever you are, you may see some people speaking loudly and some gathering quietly, some people running and some walking slowly, lots of people looking lost or standing still. No matter where you are, you’ll see people holding out their hands, and they’ll stay there until you’re ready to take them; they’ll sit with you where you are, and perhaps even show you a place you didn’t know existed. While you’re navigating your way around, there’ll be some footprints there that you can follow, but don’t be afraid to make some of your own too. Take your time exploring different paths to find out where you want to go. While the paths we take will all be different, taking someone’s hand or reaching out yours might just make the walk a little less lonely.