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.

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