Whilst living with friends in London in the late 90s and thinking about what I was going to do with the rest of my life, I listened to a lot of Belle and Sebastian. I especially loved the song Fox in the Snow and thought of myself as like the ‘Girl in the Snow’.
Girl in the snow, where do you go
To find someone that will do?
To tell someone all the truth before it kills you
They listen to your crazy laugh
Before you hang a right
And disappear from sight
What do they know anyway?
You’ll read it in a book
What do they know anyway?
You’ll read it in a book tonight
There was a secret about me that did not yet have a name, although I knew that my body was different to the bodies of my friends, who had launched into the magic and misery of first loves and young adult relationships. Although always first on the dance floor and often last standing (and usually still drinking) at the end of the night, I watched from the sidelines as my peers seemed to move effortlessly into the next stages of their lives.
I first found out that there was something different about my body when I was just 14. I had spent the previous few months recovering from the surgery I had been told was needed to repair hernias. I had felt almost excited before the surgery, as I was missing school and had been told it would be simple and easy and nothing to fear. My Dad’s new job also came with BUPA cover and the hospital seemed more like a hotel, even having a TV in my room. The reality was very different. The pain was unexpected and terrifying – and although I almost looked forward to the injections of morphine, they made me hallucinate and horribly constipated. The TV became something to dread as even Esther Rantzen on That’s Life made me laugh and laughing is not easy after surgery – and I had to ban my sister from visiting as just one look at her made me painfully giggle. Things were initially better once back at home, although the stitches came apart and I developed an infection and needed daily dressings and salt baths. It was after this summer lost in daytime TV (I was watching Neighbours long before anyone else), that I found myself sitting in my childhood doctor’s office with my parents.
“I expect you are wondering why you haven’t started your periods” my doctor asked.
I felt like I almost had a premonition of what he was going to say next, as I didn’t feel shocked as his life changing words washed over me. “Hernias… damaged ovaries… pre-cancerous… needed to be removed… can’t have children”. It seemed as if the appointment lasted for only minutes and then we were back outside again and I don’t remember crying. Maybe I should have noticed that my parents were also not crying, but I just accepted that this information was as new to them as it was to me.
Afterwards we went for a drive – it was one of my favourite drives, into the mountains where you can see the lights of the city and down into the valley below to see the house where I was born. I had heard all the stories about myself as a baby, the time I posted all the letters back out of the letterbox and my parent’s bills went floating up the hill – and the time I picked all of the beautiful flowers that had been planted in our garden and proudly stated “floo floos”. I had heard about how they would place me on the mat in front of them and marvel that I was theirs, this little person that they had made and loved more than anything. But I never heard the stories of how they had sat in that house feeling terrified and alone, knowing that there was something about their new daughter that they could not share with anyone. A secret they had been told to keep, even from me.
On the way home, my parents told me that it was OK, nobody needed to know, I could tell anyone who asked that I had started my periods over the summer, nobody needed to know the truth. Nobody needed to know.
The next day everything seemed back to normal. It was still summer and we sat in the garden, watched TV, argued as families sometimes argue – and a few weeks later I was back at school and celebrating my fifteenth birthday. Nobody mentioned the appointment or spoke about what I had been told – nobody asked if I was feeling OK. I just carried on the same as before, except that now I had this secret.
A few months later I saw my GP for something unrelated. I remember him as a big self-assured man, who was likely approaching retirement and prioritised competence over his bedside manner. “You’ve had the surgery then?” he asked. As I nodded he added “and you’ll be needing another surgery before you will be able to have sex”. I was only 15 and did not know how to respond to this or even what questions to ask, so just remained silent. When back at home, I tried to ask my parents what he had meant, but again I was 15 and did not have the language to know the right thing to say. They told me it was possible that something about this had been mentioned, but that they had been told that things might be difficult at first, but it should be OK if I meet a nice husband.
I had again been given some words about my body, but not the voice to express them or the opportunity to question them. I buried the words along with the shame I felt and didn’t say them out loud again for the next few years. It wasn’t even the real truth that remained buried and unspoken, but the lies I had been told about unexpectedly finding pre-cancerous ovaries that needed to be removed.
I was given hormone replacement tablets to take every day, with a glass of orange juice at breakfast. The HRT changed my body dramatically from a natural B cup pre surgery, to a G cup within a couple of months. My childhood doctor had left and when I tried to share my worries about my changing body with my new hospital specialist, he told me that I should be pleased as it was good for girls to have large breasts. I did not go back to see him again and I don’t think anyone really noticed that I was lost to follow up. I could get the HRT on repeat prescription and there was no other support that they offered and they no longer even needed to measure me or marvel at my different body. In their view I had been fixed – but inside where my feelings of shame were buried, I felt broken.
I was 15 in 1987, with teen films and first love everywhere, from Dirty Dancing and Pretty in Pink – even Scott and Charlene in Neighbours. There was always some problem to overcome, being from the wrong side of town or being unable to dance (carrying watermelons), but nobody had a secret like mine. In all the teenage fears of first love, first sex, first heartbreak, even fear of pregnancy – there was never a fear of your body being unable to do any of this at all. This felt like my secret alone – and how could I tell anyone the truth, when I didn’t even know the full truth myself. But there is only so long that you can keep anything buried. Shame is corrosive and it will always find a way to seep out into other areas of your life and colour the way you see everything, becoming part of the many ways you can find to hate yourself.
The lies I was told did not protect me, they did not protect my family – they left us without the language and voice to even find support. They left us isolated and alone. My parents never met any other parents experiencing something similar – even being told that it was very unlikely that they would meet anyone else as I was just too rare. Even today in our modern NHS, where communication skills and patient voices are increasingly prioritised, I still hear similar stories of young people and their families facing these issues alone, with no specialist nurses or psychologists to help them navigate the many difficult decisions they are faced with. Far too frequently they are not signposted to support groups such as www.dsdfamilies.org and young people grow up with the same feelings of shame, never meeting other young people with similar experiences.
Parents should not be left to support their children alone, without being offered the psychological and peer support that will help them find the words to tell their children that it is OK to be different and that they can feel proud of their bodies. We need coming of age stories for young people with different bodies, so we know that we can be loved and accepted as we are. We need to know that our bodies are not shameful and that we can share as much or as little as we want about ourselves. We need to know that we are not a secret. Just like the Girl in the Snow sang about needing to tell someone the truth before it killed her, I was only ever able to mend myself once I knew my truth and was able to share this and feel accepted.