A letter to my 17-year-old self.

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.

Dear Susan,

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.

Disclosure: a choice, a process, a privilege

“I want to write a novel about silence”, he said: the things people don’t say. – Virginia Woolf

“What are you thinking, Sue?”; a question my Mam has inquisitively asked periodically throughout my life at times when I’ve looked sad, or pensive, or uncharacteristically quiet. There have been moments when I’ve divulged my innermost thoughts and feelings, and moments when I’ve laughed and said “there’s probably a reason I’m thinking it and not saying it”. I’ve inherited my mam’s inquisitive personality, and developed intrigue in those parts of people’s lives that remain silent; the things people don’t say. I have pondered the reasons why people choose or choose not to speak their silences, what happens when the unsaid becomes said, and what a privilege it is to have the power and freedom to make that choice.

A Choice

It’s been three years since I made the choice to (very) openly share the part of myself that felt most silent, by writing a blog about my experience of living with MRKH syndrome. My decision to disclose came when the balance shifted from 10 years of fearing that the negative consequences of disclosure would be greater than the freedom it might offer, to one day realising that the discomfort of non-disclosure far outweighed the risk of disclosure. That moment of clarity came while sitting in a restaurant in Boston after giving a talk at an MRKH conference earlier that day. I reflected on how I had been mentally dividing my friends and colleagues into “those that knew” and “those that didn’t know”, which equated to “those around whom I could be fully myself”, and “those around whom I needed to censor myself”. I thought about how after every trip to Boston, I felt invigorated to advocate for MRKH, but how despite the fire in my belly that made me want to change the world, I found myself returning home year after year pretending that I had been on yet another extravagant “shopping trip”. I contemplated the many barriers to disclosure: shame, embarrassment, fear of being misunderstood, not wanting to be treated differently, concern about what others might think or say, to name but a few. Ultimately, I couldn’t find a barrier big enough to be worthy of enduring the stifling feeling of hiding an integral part of myself. The experiences I’d had because of MRKH and the way in which I’d coped with those experiences had shaped so much of who I was, that sharing it just felt like the right thing to do.

So for me, disclosure was about identity, being true to myself, and having the freedom to immerse myself in advocacy and research in the hope that I could make some kind of difference. Open disclosure felt to me like the best way to allow those things to happen. However, I appreciate that for most people, decisions about disclosure may be less about public proclamation on social media, and more about navigating how, when and with whom to share personal stories about one’s life. Throughout my career and personal life, I have encountered many people who have grappled with disclosure about a range of issues: medical diagnoses, mental health difficulties, trauma, sexuality, gender identity, and other challenges that life has thrown along the path. It has made me wonder about the number of people who have stories that are waiting to be told, and how their lives might be different if those stories were free to be spoken. In my experience of quieter, more private moments of sharing with friends, disclosure has invited disclosure, which has often been accompanied by expression of relief or lifting a “weight off” their shoulders. Somehow self-disclosure seems to nurture an environment where openness feels safe. But how can we make openness feel safe before the weight gets too heavy? I’m not sure I have the perfect answer, but perhaps in a world where we’re primed to present a polished image of ourselves, allowing the unfiltered version of our lives to rear its head every now and then may allow others to show their vulnerabilities too. Many of us are excellent at being reactive to distress, by showing compassion and support whenever we know it’s needed. Perhaps we could also be proactive when those needs are not so clear, by offering opportunities for disclosure amongst family, friends, colleagues, or people who may seem lonely or isolated.

Of course offering a listening ear may not always mean that people will choose to disclose. Despite my obvious bias towards disclosure, I also feel strongly that it is a very personal choice, and that sharing is not the right decision for everyone. Disclosure is often praised as brave, courageous and inspiring, which I believe is valid and true. However, I also feel that it’s imperative to acknowledge that the converse is not true; that non-disclosure does not mean a lack of courage, or bravery, or inspiration. The goal may not be to encourage people to disclose, but rather to empower people to be able to make a choice that allows them to live as comfortably as possible with the challenges in their lives.

A Process

Indeed, disclosure is probably less well conceptualised as a binary decision or a one off event, but rather as a process during which feelings towards and comfort with disclosure change with time and place. I vividly remember one of my earliest disclosures, which happened while sitting in a friend’s living room at age seventeen. At the time, my mind was consumed by MRKH, and I desperately wanted to share it with a friend whom I knew I could trust. Although I was safe in the knowledge that her only response would be kindness, as I opened my mouth to speak, my body started trembling and I found myself choking on the words that I needed to say. Eventually, I managed to bumble my way through by making vague statements like “I’m missing one of my organs and also what’s supposed to be attached to that” hoping that she would somehow guess by process of elimination of vital and non-vital organs. Thankfully, that friend had a good grasp of biology and would later train to be a nurse, so was able to guess and vocalise it for me.

For years, the words “MRKH”, “uterus”, “womb”, and “vagina” were unsayable, and every time I tried to say them I was faced with that same overwhelming anxiety (side note: see blog on why we need to normalise speaking about female anatomy). Even hearing people say “MRKH” made me flinch. So I gave myself time and space, and engaged in therapy to help me to make sense of it and process it in my own head. I then gradually started talking about it more honestly and openly with other people, until that anxiety slowly started to fade. Now, when I find myself in a new group of people who have never heard of MRKH, disclosing it only provokes minor and momentary anxiety. Twelve years post diagnosis, writing about it on the internet, speaking about it at medical or academic conferences, and saying the word “vagina” aloud barely feels scary at all.

So the risk of speaking my silence was absolutely one worth taking, but I’m also glad I allowed myself to move slowly through the process of getting to a place of readiness. I guess I feel the need to address that for the person who may read this blog or look at those who speak the loudest and think that they “should” be speaking loudly too; perhaps before they might be in a place where it feels safe to do so. As advocacy and speaking out have (thankfully) become increasingly acceptable and encouraged, I sometimes wonder whether people feel under pressure to join that movement. As admirable as it may be to raise awareness of important issues, it’s okay to do it at your own pace, or not to do it at all. Taking care of your own mental health first may enable you to have a wider impact if or when the time is right.

A Privilege

When I think about living with MRKH: the diagnosis, the treatment, the grief, it hasn’t always been easy to say the least. But when I reflect on the opportunities I’ve had and the support I’ve received through disclosure, I almost feel like I’ve reached a point in my life where I have taken more from MRKH than it has taken from me. Despite the challenges that MRKH has brought and will bring, the privilege of having the freedom to speak about it has enabled me to adjust to and embrace it in a way that I could never have imagined at seventeen.

I will be eternally grateful for the people in my life who have made disclosure feel so safe. I often wonder about the people whose struggles may remain forever hidden because they don’t share that luxury, no matter how desperately they may want to disclose. It saddens me to think about what it must be like to have MRKH in a culture where so much of a woman’s worth is measured by her ability to produce children, how it must feel to be gay in a country where certain sexualities have been deemed illegal, how challenging it must be to have a mental health problem in a context where that’s still taboo, or to live in any environment where disclosure is met with judgement or cruelty rather than acceptance and support.

Although we may not individually have the power to make immediate global change to acceptance of difference or having freedom to share silences, we do have the power to support those in our networks. It’s been heartening to see so many campaigns, individual stories, conversations and insightful documentaries gaining wide media coverage during Mental Health Awareness Week. While next week’s media coverage may be quieter again, let’s continue to look out for those within our reach. We may not all be open to disclosing our own challenges, but perhaps we could all be open to offering a space to listen for those who may need it.

We need to talk about vaginas and vulvas…

Fanny, pussy, vajayjay, “front bum” (yes, front bum)… just a few of the many terms we’ve created to describe our nether regions; perhaps because some sound sexier than real anatomical terms, or maybe because using nicknames for our lady bits has somehow become more socially acceptable and less likely to make people squirm in their seats. Finding words that challenge the taboo of discussing female genitalia has mostly been a good thing – we’ve created a language for ourselves to speak about body parts that were once unspeakable. But somewhere in the midst of lady gardens and hoo-hoos, we’ve created confusion about the ins and outs of female genitals. If given a diagram of their anatomy, how many people could correctly label their labia, urethra, clitoris, and who would know their vagina from their vulva?

“Vagina” is one of the few real anatomical terms that has fought for and secured its place in our everyday vocabularies (well done vagina!), but despite being given the thumbs up as a speakable word, a lot of the time it’s used inaccurately. People often say “vagina” to refer to everything that sits between a woman’s legs. What they really mean to say is “vulva”, a word that runs the risk of evoking the scrunched up face response. Contrary to the language we use, vaginas and vulvas are not the same thing. “Vagina” refers to the internal canal that can function for sex, menstruation and birthing babies, while “vulva” refers to the external parts of female genitalia, including the clitoris, labia, urethral and vaginal openings. Variations in sexual development mean that these structures and functions may differ somewhat between individuals, but the bottom line is that vaginas are internal and vulvas are external.

This may be news to some and familiar to others. Either way, you may be wondering if it’s really that important to be so pedantic about semantics. For me, personal and professional endeavours have affirmed my belief that it absolutely does matter! If you persevere to the end of my ramblings, hopefully you’ll find it’s important to you too.

On a personal level, most people who know me will know that I haven’t shied away from discussing my experience of living with Mayer-Rokitansky-Küster-Hauser Syndrome (MRKH), a diagnosis that means being born with an absent or underdeveloped uterus, cervix and vagina. When I thought about publicly disclosing MRKH, one of the biggest barriers was feeling terrified about other people’s misconceptions. I worried about the consequences that misunderstanding MRKH would have in terms of how I would be perceived and judged by other people. If I said I was born without a vagina, would people picture something resembling a Barbie doll with no genitals? When you consult Dr Google, two of the most frequently asked questions about MRKH include (1) where do they pee from? answer: the urethra – the urinary tract and reproductive tract are separate entities and (2) can they experience sexual pleasure/orgasm? answer: yes – MRKH or no MRKH, women derive much of their sexual pleasure from the clitoris, which is part of the vulva (i.e. not the vagina), and women with MRKH can have vaginal intercourse after lengthening the vagina if desired. After much deliberation about how poor understanding of anatomy would impact on how people viewed me and what they would say about me, I carefully concluded “fuck it” and decided to adopt the “give less of a shit” model of coping and write about my vagina on the internet.

As it happens, disclosing MRKH has been incredibly liberating. It has enabled me to be wholly and unapologetically myself in all areas of my life, to speak openly and advocate for women with MRKH, and to join my personal and career interests by researching MRKH, which I hope will lead somewhere exciting in the future. So my experience has largely been a positive one, but I’m painfully aware that others may not feel so safe to disclose MRKH, other differences of sex development, or any other issues that involve unspeakable body parts. Although there are many factors that influence individual choices about disclosure, I can’t help but wonder, if we all had a better understanding of anatomy and didn’t have to be so elusive when discussing our “privates”, would people feel less shame and fear about discussing differences?

From a more professional perspective, I’ve had many a discussion with my health psychology colleagues about vaginas and vulvas, bladders and bowels, and the body parts and bodily functions that we all have, but don’t all feel comfortable to speak about. In health psychology, our interests include people’s health behaviours (the things people do to look after their health) and how people adjust to, cope with and manage long-term physical health conditions. One way of looking after our health is being able to notice changes in our bodies and getting checked out by a medical professional if we spot any unusual or concerning symptoms. If we don’t know our vaginas from our vulvas, and our urinary systems from our reproductive systems, how can we tell when they’re working properly and how do we describe our symptoms when they’re not? Another example of looking after our health is partaking in screening programmes like cervical screening, but if we don’t know what a cervix is, it’s unlikely that we’ll feel motivated to attend a screening appointment.

Even for people who know where things are “down there”, embarrassment about saying certain words out loud may prevent them from sharing important symptoms with their doctors. This may result in silent suffering rather than help seeking and being offered useful interventions or simple self-management strategies. There are a multitude of long-term physical health conditions in which people experience symptoms like sexual dysfunction, vaginal dryness, low libido and urinary problems. Despite being some of the most distressing and disruptive symptoms in daily life, they’re often the ones that remain most hidden. Perhaps if we were to educate people about what goes on “downstairs” and open up our dialogue to free the locked words that describe our anatomy, we would feel less embarrassed and ashamed and more supported and confident to speak out loud and proud about our “bits”.

So why not drop your hoo-has and cha-chas and get to know your vaginas and vulvas? Crack out a mirror, have a look at what’s where, check out a diagram and get chatting with your pals. With or without a difference of sex development or a “women’s health” issue, peeking out from behind the curtains of slang terms for our genitals may just result in less shame, more acceptance and freedom to talk about what lies beneath. Let’s not allow our “private parts” to be so private that they’re a mystery even to ourselves!