Every year when I attend Boston Children’s Hospital’s annual MRKH conference, I’m met with the familiar, vivid memory of how I felt the first time I attended. And every year when I speak at the conference, I suppose I try to provide comfort to people who may be in the same place that I was in that first time. As I sat down to write my talk this year, I reflected on how the person I am really speaking to is myself at 17. So, this year I wrote her a letter to tell her some of the things I would want her to know.
I can still see you standing frozen outside this hospital, wondering how, when or if you’re going to find the courage to put one foot in front of the other and walk through the door. As you stand there choking back your tears, the grief and the loss that you have felt since your diagnosis feel so visceral. You haven’t told many people about MRKH, because you just don’t have the words to speak about it and you’re so afraid of what other people might think or say. So being far from home in a place where you can’t hide from MRKH makes you feel so vulnerable and exposed. You haven’t stepped foot inside a hospital since the day you were told about MRKH, so as you stand outside this hospital confronted by a day filled with MRKH, all of those memories come flooding back and you feel so frightened of what is to come.
It hasn’t been too long since you sat in the doctor’s office back home in Ireland, being told that your body was not what you thought it was. You sobbed for the future that you longed for but couldn’t have. It was hard to breathe easily, knowing that you could never get back the life you had just a few days before. I know it felt like a light went out inside you; you forgot how to laugh, and you no longer knew what it meant to feel joy. When your head hit the pillow each night, you felt so incredibly lonely and like nobody else could ever understand. How could they understand when you couldn’t make sense of it yourself?
As I see you standing there, with all those memories flashing through your head, paralysed by anxiety, there are things that I desperately want to say to you. I want to tell you that I’m sorry this happened to you. You are dealing with something that is far beyond your years, which just seems so incredibly unfair. As you prepare to put on your brave face, I want to tell you that you don’t have to wear that mask.
I know that you’re grieving, and I want you to know that it’s okay to grieve.
I know that you’re consumed by sadness, and I want you to know that it’s okay to be sad.
I know that you’re frightened, and I want you to know that it’s okay to feel fear.
I know that right now you would give almost anything to take this pain away; to go back to a time when you’d never heard of MRKH, or to skip forward to a time when you’ve somehow figured out how to fix it; a time in the future when you’ve fallen in love, had three children, and all of this has faded into the distant past. Right now, it feels like these are the only things that will make you feel whole again.
But I want you to know that you won’t have to wait until then for joy and meaning to creep back into your life.
I want to tell you that if you hold on to the pain just a little while longer, you will find a strange and unexpected beauty in your pain.
MRKH is going to take you to places within yourself that you didn’t ask to go, and navigating your way through those places is going to shape the person that you become, the qualities that you develop, and the passions that you are going to follow in your future. Although you may not believe me in the dark place you’re in right now, I want you to know that there will come a time when you wouldn’t change MRKH for anything. If someone were to try to take it away, you would hold onto it tightly, because you will cherish the things you have learned from this experience. You will cherish your insight, your compassion, your resilience.
I promise that there are brighter days ahead, but please don’t feel like you have to get there alone. So as you stand there outside the hospital, debating whether to go to your first conference, I want to go back to hold your hand and guide you gently through the door. I want to tell you that the step you’re about to take will be almost as life changing as the day you were diagnosed with MRKH, but this time it will be life changing for all the right reasons. You are going to learn from a medical team who will make you feel so safe and held. You are going to meet people who will become dear friends and colleagues, and you will form such special relationships that will last a lifetime. Stepping through this one door is about to open so many others that are going to bring more purpose and meaning to your life than you ever could have imagined.
The first time you come here, you’ll probably do more listening than talking, and that’s okay, because nobody is going to ask you to do or say anything you don’t want to do or say. But as you come here year after year, you’re going to find your voice and feel more comfortable with being open. In doing so, you’ll see how sharing your experiences and listening to those of others makes people feel more supported and less alone. Seeing the difference that this place makes to people’s lives will inspire you. It will ignite a fire in your belly that makes you want to change the world; to raise awareness about MRKH and do everything you can to improve care for MRKH globally.
Don’t worry – you’ll start off slow and steady; testing the waters by sharing MRKH with those who are closest to you, and you’ll feel humbled by their kindness and support. One day, in your own time and when you feel ready, you’ll openly disclose MRKH by writing a blog about your experience. I know that seems unimaginable now, but you’ll find a new freedom in being wholly and unapologetically yourself, without having to hide any part of you.
You’ll use this new freedom to speak loudly and proudly about MRKH. You’ll work with a kind and committed group of medical professionals and a team of inspiring women who share your passion to make a meaningful difference in the MRKH world. When you achieve your goal of becoming a psychologist, you’re going to combine your personal and professional passions by doing research on psychological adjustment in MRKH. You’ll work hard to ensure that your research has impact on mental health care provided to people affected by MRKH around the world.
With each of these experiences will come more and more healing. So despite the fear you felt that first time you came, there will come a time when you will feel so grateful to have had the privilege to travel to this day. You will be able to say thank you to your mam for bringing you here that first time, no matter how much you didn’t want to go. Every year, when you leave the Boston conference, you’ll feel sad for the other Irish women who haven’t had that privilege. But one day, you’ll email a doctor in Ireland suggesting that we have a similar day. She’ll welcome your suggestion with open arms, and you’ll work together to hold Ireland’s first ever MRKH day. When you leave her office after your first meeting, you’ll walk the same streets that you walked in floods of tears on the day you were diagnosed with MRKH all those years ago. But this time, you’ll walk those streets wearing a beaming smile so wide that it hurts your face. You won’t be able to wipe that smile away because you know that the next time a young woman is diagnosed with MRKH in Ireland, she won’t be told that there’s no support. Instead, she will be told that there is a place where people with MRKH from across the country come together for information and support. And you will know that when that happens, it will be because of you. You are going to feel so immensely proud, and believe that your ambitions have no bounds.
So from almost 30 year old you to 17 year old you, I want you to know that I’ve got you. Be kind to yourself now, trust in your future self, and be open to the opportunities that life brings, however unexpected they may be. When moments of joy and laughter creep back into your life and catch you by surprise, let them in and hold them dearly, because there is a lifetime more of them to come. And when your 30th birthday comes around, I promise that you won’t be mourning the things you don’t have. You’ll be celebrating wholeheartedly the things that you do.