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.

Advertisements

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!

 

MRKH: a (half) marathon, not a sprint.

Hi, I’m Susan. I’m Irish, live in London, currently doing a PhD and training to be a health psychologist. I write, I run, I travel, I dabble in make-up artistry, I wine & dine, and I’m lucky enough to have a wonderful bunch of people in my life. I also happen to have Mayer-Rokitansky-Küster-Hauser Syndrome, or MRKH. MRKH is a congenital anomaly of the female reproductive tract. Women with MRKH are born with normal ovaries and fallopian tubes, but with an absent or underdeveloped uterus, cervix and vagina. Women with MRKH cannot carry a pregnancy, but if they choose to, can have treatment to create a “normal” length vagina by stretching the tissue that is already there but shorter than typical length. Ten years post diagnosis, having facilitated support groups and spoken at conferences, writing openly about it just feels like the right thing to do. To the 1 in 5,000 women with MRKH, I hope you find something helpful in my writing. To everyone else, I hope there’s something in it for you too. 

To mark the 10th “anniversary” of my diagnosis, I’m going to run a half-marathon for the Center for Young Women’s Health at Boston Children’s Hospital; a place that’s become a big part of my life over the past 10 years. In a nutshell, they provide excellent online resources, host monthly online chats and annual conferences for young women (age ≤25) and their families, and their healthcare is second to none. So to kick-start this blog, I thought it might be a good idea to publish the talk I gave at their 11th annual MRKH conference earlier this year. It gives an overview of my experience of MRKH, and perhaps offers some insight into why I’ve chosen to run for CYWH. 

MRKH Conference Talk, Boston Children’s Hospital, March 2016

I was diagnosed with MRKH 9 ½ years ago, and I’ve been coming to this conference almost ever since. As I thought about what to say here today, I spent some time reflecting on how I felt the first time I came here; how it felt to walk through those revolving doors that you all walked through this morning, and to sit here in this auditorium just as you are doing now. I felt scared, lonely, exposed and like I wanted to be anywhere but here. I distinctly remember two conversations I had with my Mam that day. The first happened just outside the hospital as she encouraged me to walk through the door. I was acutely aware that when I did, it would be the first time that I would be in a room full of people who would know that I had MRKH, and that thought seemed to be enough to glue my feet to the ground. She looked at me and said “I feel like I’m torturing you”, to which I may have responded “you are”. The second conversation happened just at the back of this room where we sat that first year, as we listened to a woman with MRKH share her story. My Mam leaned in and whispered to me “you never know Sue – that might be you one day”, to which I responded emphatically “not in a million years”. As it turned out, her encouragement to get me through the door that day was life changing, and it took a lot less than a million years for me to feel brave enough to stand up here and share my story. But although I have grown to love it, coming here for the first time was not an easy thing to do. It took a lot of courage, just as I imagine it has taken many of you a lot of courage to be here this morning. So I’d like to welcome you all – both those of you who I’ve had the privilege of getting to know over the years, and those of you who are here for the first time and might be feeling a bit lost, lonely, nervous or uncertain about what to expect. Or perhaps you might be feeling hopeful, or relieved, or comforted by the knowledge that there is a place like this for you to turn.

Since coming here for the first time, I’ve met a lot of women with MRKH, and one thing that always strikes me is that MRKH doesn’t target any particular type of person. We are all coming from different backgrounds, cultures, beliefs, perspectives and personal experiences, and each of us has a story to tell. We are also coming from different stages of MRKH in our lives, so we may be trying to navigate our way through different challenges at the moment. However, whether you’re here because you’re a parent trying to support your daughter, a sibling trying to support your sister, a partner trying to support a partner, or a young woman trying to find support for yourself, we are all here because we are trying; trying to seek out information that will help us to understand a condition that is not well-known, trying to find support for ourselves at a time when we may feel very isolated, and trying to offer support to each other by sharing our own experiences, and listening to those of others. So I hope that by the end of today, you leave feeling informed and supported, and that perhaps you may even find it more difficult to walk back out through those revolving doors than you did to walk in.

So to tell you the story of how a girl from Ireland ended up speaking at a conference in Boston, I’ll take you from my diagnosis at 17 right up to now. As I sat outside the doctor’s office awaiting the results of my MRI scan, I listened to comforting music on my iPod to help me to stay calm. I promised myself that no matter what the outcome, I would keep it together and stay strong. But when my name was finally called and the music stopped playing, I remember feeling like I was tensing every muscle in my body to try to hold myself together. And when she looked me in the eye and said “your womb didn’t develop darling”, I fell apart. I was a child being told that I would never have a child. I couldn’t breathe, the room started spinning, and I sobbed. I felt suffocated by the realisation that I would never again know what if felt like to not have MRKH. From that day onwards, the world looked different to me. It almost felt like I was living in a parallel world where I could see everyone else, but nobody could see me. I lost a sense of who I was, and felt like I was defined by my diagnosis. MRKH became the first thing I thought about when I woke up in the morning, the last thing I thought about before I went to sleep at night, and the only thing I knew how to think about during every waking moment in between.

I will always remember something that my Dad’s aunt Jennie, one of the dearest people in the world to me, said to my parents when she learned of my diagnosis. She said that she had noticed a sadness in me, and that she could see that my “little sparkle” was gone. It broke my heart, because I so desperately wanted to be that person with the sparkle in my eye, both for myself and for those people who cared about me so much, but I didn’t know how to re-engage with a world that I no longer knew how to be in, and I couldn’t find a way to re-connect with the person that I used to be. My diagnosis didn’t come with an instruction manual on how to cope. The only information I got from my doctor was a post-it note, and on it written, “MRKH”.

So in the absence of any helpful information, my Mam did what she always does and advocated for me at a time when I couldn’t advocate for myself. She searched the internet for information and found a hospital in the UK with experience in treating women with MRKH. She pleaded with me to go and meet the team there, and I reluctantly agreed. At my first appointment, they confirmed my diagnosis and explained what it meant: I was born without a womb and cervix, and there was nothing that they could do about that. And I was also born without a vagina, but if I wanted to have treatment, there were options available to me – I could have surgery or use dilators. Although I already understood my diagnosis, hearing it out loud again felt like being kicked in the stomach. But without giving it much thought, I decided to start treatment using dilators – at the time, it felt like there were just so many aspects of MRKH that I couldn’t control, and this felt like a problem that had a solution. So I spent a few days in hospital and continued treatment at home three times a day, every day for three months. It was one of the most physically and emotionally demanding experiences that I’ve ever faced, but I just wanted to get it over with. And at the end of three months, they told me that I was done and that I would never have to use a dilator again. So I went home and tried to erase it from my memory.

But when I attended the conference here for the first and second time, I realised that I had been given the wrong follow-up advice. I heard the consultant say that when you’re finished with treatment, you still need to continue to use a dilator about once a week. So two years after finishing treatment, I came here for a second opinion and it confirmed my fears – if I wanted to have treatment, I would have to do it all over again. I was devastated – I was so angry and frustrated and upset that I had gone through so much for nothing. MRKH had taken me to three different doctors, in three different hospitals, in three different countries. But they say that the third time’s a charm, and in this case, it most certainly was. I often feel like whenever I have an ‘MRKH-related’ experience, I leave a piece of myself wherever it happened, and I carry a piece of that place with me. Sometimes I wish I could rescue myself from those places that didn’t treat me with the care that I deserved, but when I think of the piece of myself that is here, I feel safe and supported. Here, I was treated with kindness, compassion and respect. They saw me as a person first and a patient second and I knew that I had the power to make a decision that I was comfortable with. So although it still wasn’t easy, when I decided to go through treatment for the second time, I could trust that I had been cared for properly.

After that, I started to get more involved in these conferences by co-facilitating support groups and talking to young women with MRKH on the online chats that are hosted here. The experience I have here on this day every year is always incredibly emotional and so cathartic. This day is special to all of us for different reasons. For me, coming here every year has enabled me to give MRKH some sort of purpose in my life – to share my experiences and viewpoints in the hope that they may resonate with some other people here. It has given me the opportunity to meet other inspiring women with MRKH, whom I respect and admire so much. It is also perhaps part of the reason I decided to pursue a career in health psychology, so it’s safe to say it’s had a big impact on my life. But as wonderful as it is to have this day, it’s always hard to go back home and try to process the intense emotion that you feel here. And then you have the other 364 days of the year to live your life.

For me, MRKH didn’t stop me doing anything I wanted to do during those other 364 days of the year. I went to college and got my degree, I worked at the same time, I played hockey, I had a great social life, and I had the most wonderful friends and family that anyone could ask for. So after finishing treatment and attending the conferences, as far as I was concerned, I was fine. I had overcome MRKH and I felt invincible. I was so strong that there was nothing that could get in my way. But sometimes when you go through a traumatic experience, it can feel like you’re hurtling through it at such speed that you don’t really get a lot of time to just pause, and breathe, and process what you’ve been through. And then when you finally do get a chance to breathe, it can all come crashing down on top of you.

Three years ago, I had just finished my undergraduate degree, had taken a year off studying, and worked part-time. So for the first time in a long time, I had a lot of head space think about all that had happened to me since the day I was diagnosed with MRKH six years previously. I began to relive all of those experiences that caused me so much pain. Unwelcome flashbacks flickered through my mind day in and day out, and that suffocating, panicky feeling that I once knew so well reintroduced itself to me. At a time when I thought that I had “overcome” or “accepted” MRKH, it started to intrude into my life again and it caught me off guard. It scared me, because I once again had that fear that I was losing to it and that I wasn’t strong enough to cope. After six years, it felt like I was waking up from a trance and frantically trying to grasp on to some sort of explanation for why this happened to me, and trying to make sense of something that made no sense to me at all.

I had always prided myself on the strength I showed in dealing with MRKH, and I was sometimes reluctant to seek help when I may have needed it. But when I started to feel those feelings again, I decided to take on board a piece of advice my Dad had offered me when I was first diagnosed: “Please don’t let your inner strength become as much a burden as it is a help”. So I booked an appointment with a therapist. I decided that I owed it to myself to find a space to talk through my experience of living with MRKH and to give myself the time I needed to try to understand it and find a place for it in my life. And although it was deeply challenging at times, that decision turned out to be one of the most rewarding, and life-changing decisions I have ever made.

In the beginning it was difficult to allow another person to delve so deeply into an experience that felt so private and personal to me. It was hard for me to allow myself to feel vulnerable and to talk about the parts of MRKH that made me feel so unsettled and upset. But as the weeks went on, I found myself talking more openly and honestly about how I felt about MRKH than ever before. And in doing so, I gradually teased apart the knots that MRKH had tied so tightly in my head. I have learned so much about myself since then and I have gained an insight into myself that I know will be invaluable to me for the rest of my life. I have learned that sometimes, it is okay not to be okay. I have learned that it is imperative to honour the sadness, the grief and the loss that I have felt since being diagnosed with MRKH. But perhaps most importantly, in giving myself permission to honour my experience, and in giving myself the time and space I needed to find meaning in that experience, I have given myself the freedom to honour my life; to give all of myself that I have to give, and to embrace all of the opportunities that life has to offer.

I know myself well enough to know that there will be times when MRKH is tough, and upsetting, and pushes me to my limits. But I also know myself well enough to know that during those times, I will have a greater capacity to cope because of all I have achieved in the past 9 ½ years. I trust in myself enough to know that if there comes a time when I want to have a child, or indeed do anything that I feel I can’t do because of MRKH, I will make those things my priority, and do everything in my power to make sure that they happen. So in moving through your life with MRKH, please give yourself permission to honour your sadness, your grief and your loss. But also give yourself the freedom to honour your life; give all of yourself that you have to give, and embrace all of the beauty that life has to offer. And remember that although the meanings that we all find in MRKH may differ, each and every person’s experience is just as important, just as true and just as valid.

Thank you for reading.

If you’d like to sponsor me for the half-marathon, you can do so here. Alternatively, please ask any doctors/gynaecologists you know if they’ve heard of MRKH, and perhaps enlighten them if they haven’t. Thank you.