I’m writing to you, a 17-year-old, about a year after your MRKH diagnosis. I’m 18 now and, looking back over the year just passed and what you’ve been through, I’m here to tell you that there is light at the end of the tunnel.
I think you led a pretty standard life up until sixth form started to be honest. Standard ambitions to get a degree, a PGCE, get a teaching job, married and have children. But 2019 brought a lot of problems that stood in the way of those goals. MRKH is just one of them and it felt like your whole world had fallen apart. Your body won’t feel like your own, and you will feel trapped in your own skin. MRKH has taken away a lot from your life, it’s important to allow yourself time to grieve.
You won’t formally get this explained to you for a while but MRKH means you don’t have a womb, a cervix, or a part of your vagina, there isn’t much point getting overly biological, because it’s not your way of thinking. But you do need to know both and understand that you are 100% a woman. Don’t let MRKH or ignorant people tell you otherwise, because they will try to, you mustn’t believe them. And no matter how much mum tries to blame herself, and she will, keep reassuring her that it isn’t her fault. I’m hoping that the genetic testing I’ve just been referred for can provide peace of mind for her. I want to do them because mum and dad have been waiting for 18 years for me to get a referral to a geneticist. I can’t take this away from them. But also, going back to a hospital that holds some traumatic memories is hard for me. I’m learning as much as I can with the help of a lovely geneticist who I’ve met through MRKH before I decide. You need to remember that this is so hard for mum too, and for all the people who care about you. It’s a big burden for anyone to carry.
You’ve been through hell and back already. The embarrassment of phoning the doctors and telling them you’ve never had a period at 17 years old, whilst stood in an empty English classroom, with a staff member you’ve grown to love and value stood outside the room, waiting to hear what they had to say. The appointment itself with the GP came around quickly. You took your best friend Emma with you, and the diagnosis journey began. The blood tests, the ultrasound, consultations, more blood tests, an MRI, and then diagnosis day came…
I remember that day so clearly. School gave you the day off, but you went in anyway, just to have a moment to get out of your head. We were all obviously a bit tense. I remember walking up to the English department, the one place I felt truly safe, feeling like I had the weight of the world on my shoulders. Becky was there, as she always was back then. She had a class of kids, but clocked me, smiled at me, and came to be with me. She had a hold of my hand, looked me in the eye and said “whatever this is, we will fight it together; I promise.” She told me to put a brave face on, and that when I came back in afterwards, she’d be right there waiting, and she was.
Things are different now. Your life will do a full spin. The people who you trusted the most will change. You’ll lose friends who think the burden of MRKH is too heavy for them to carry. You’ll feel abandoned, isolated, guilty, and almost every negative emotion possible, but it won’t last forever. You’ll soon learn who is here for the long haul and who isn’t.Take Emma for example, she still hasn’t gone anywhere! You will test her and push her away, drag her to London and back more than once, keep her up until ridiculous hours when you need a friend, but she won’t go anywhere, and that’s a promise. I’ve lost count now of the amount of people now who have said to me “You’re so lucky to have Emma, Vics” or “Everyone needs an Emma” or “I’m so jealous Vics! I want an Emma!”, she really is the best friend anyone could ever ask for. And I promise you she won’t leave your side. Your best friend of 13 years, your rock and confidant, President of Team Vics (which is what we call my support team) we got so lucky to get her. It must have been and still probably is, really hard for her too. I never stopped and thought about how this could all be affecting her as well as me. We are so close it’s like we are going through each step together. She has such a lot of pressure on her to support me, but she manages brilliantly. Treasure her for as long as you can, hold onto her, she’s pretty amazing! Emma and her family love you to pieces. 16 years after becoming tied to their family through pre-school, they are still supporting you, you’ve got them for keeps!
Team Vics is one of the best things that’s developed over the period since diagnosis. It was Emma’s idea. It’s your team of women who have and do look after you through the bad times, but they’re also there through the good times too. It’s important to learn that the people who can’t cope with you at your worst don’t deserve you at your best. We’ve got a team mascot on the way, and we use #teamvics when showing our solidarity. You can tell who’s a part, or who should be a part, by the way you feel around them. Anyone who’s made you feel loved, cared for, and worth something despite what you’ve been through or what you’ve put them through is a part of your team. If you’ve tried to push them away and they’re still right by your side, if they’ve been on the phone with you at 2am when you’re being sick from a panic attack and are still here then they’re here for the long haul. We’ve got Emma and her family, some school friends, a few teachers, some MRKH sisters, and some of the mums from dance all playing big roles, as well as your swimming teacher Danielle. Team Vics consists of people who don’t look at you or treat you any differently for having MRKH. I think it’s so important that people still see you and treat you as Vics. Not as the girl with MRKH who can’t look after herself. Some won’t be able to see you in the same way because of MRKH, so the rare finds who still love you for you feel even more valuable.
You’ll also find comfort in swimming more than you can ever imagine. It’s a great place to let out your anger and frustration on the world. It’s so much healthier than lashing out at the people who love and care for you the most and pushing them away, which you and I need to learn to stop doing! It’s like a safe place. The coaches can all tell when you’re not acting or behaving like yourself, so will adjust their lessons accordingly. Sometimes spending the whole lesson chatting or venting is what’s needed. Or maybe a full and intense workout, in and out of the water is what’s right, or quietly swimming up and down with music on, not talking to anyone. Either way, Danielle can see what you need. Make the most of it before moving away, you’ll miss them more than you think.
You’ll make so many new friends within the MRKH community. Like a second family and they’ll give you the sense of belonging you’ve craved all your life. You are soon going to cross paths with someone pretty special, united by MRKH. She will teach you how to love again, and will be like a second mum to you. Loving you and looking after you when you aren’t strong enough to look after yourself. I know that right now you feel nothing but hatred for the world, especially for yourself for simply being inadequate and for some of your friends for walking away and being useless. But these feelings don’t and won’t last forever, you will learn to love again. She will save you from yourself, from the demons you will face, push you out of your comfort zone. But also to do the necessary things to feel better. Always loving you, holding your hand across the miles through every mental, physical and medical battle that you will face.
You’ve also got some amazing English teachers in your corner, who won’t leave your side. They’ve got every angle covered, from making sure you’ve eaten before an exam to writing you a list of questions to take to hospital appointmentsor a hug and kind words on the bad days. They have, and still do go above and beyond to make sure everything’s okay. They don’t have to, but they do. I’ve left school now, not far off moving away to University to start an English degree, and they’re still here. They’re my ray of sunshine on the cloudiest of days. Even now they’re some of my biggest cheerleaders on my MRKH advocacy journey, reading over posts or blog submissions etc all on top of helping me acaemically. I never dreamed I could get this much comfort and support from my teachers, but I really did. I feel so much safer knowing they aren’t going anywhere even when I move away.
You are going to face some low moments and even some quiteintense panic attacks in the coming year. Some of them will feel almost unbearable, but you’ll learn what to do during those and you’ll come out the other side after each one eventually feeling stronger than ever. Most recently, I reached out to one of my teachers, and over the past 4 months, she’s given me nothing but her time, patience, and care. I owe the fact that I’m still here right now, happy and healthy to her. She spent hours and hours working with me to rekindle my love for English, whilst indirectly also finding my self-worth. I still don’t think she realises it but she genuinely saved my life. She pulled me out of the hole of despair and self-hatred I was stuck in, she encouraged me to let my wall down, brick by brick. You don’t need to hide anything from her. The last time I saw her was way back in March (it’s now August) when she held me in her arms and said “you know where I am if you need me, I’ll always be here for you” and she still is. I’m very lucky to have her in my corner. You’ll find so much happiness just from reading too. Curling up with a book and escaping the world, having that moment of peace from reality, it’s such a relief! Even learning about infertility, MRKH and mental health through literature. Using the subject you love to learn about your life changing diagnosis makes that love for literature even stronger and more special. Sitting here writing this now, I know that English is the right choice.
I don’t think that now you would believe the life I’m living right now! I’m preparing to move away and start a degree in English. I’m one of the youngest advocates for MRKH out there, even taking part in research studies and advocacy projects! I’m a stone throw away from being a qualified nail technician, started my own business doing nails, getting real, psychological and medical help, with the best support circle out there. You will soon learn that the good parts of MRKH. The family, the feeling of belonging, the empowerment of advocacy, the bravery you will develop, the security in a community where you won’t be judged for who you are, the strong people from your ‘old life’ who stick around, is all worth SO much. You will be happy again. One day soon, you will find your purpose, your voice, and the fog will be lifted. Stay strong, and never forget that you are imperfectly perfect just the way you are, and you are not on your own, you are so loved.