I’ve written a lot about my own experiences of being born with a variation of sex development. However, it is not just my story and it has also had a huge impact on my family, especially my parents. I found it hard to write their story & separate it from my own voice and feelings, but hopefully this catches some of what they experienced. It made my Mum and Sister cry a little – although this included some happy tears, which are the best type of tears and always remind me of Anne of Green Gables.
I now live in a small town just outside London and every year a local family organises a small festival in their very large garden. Everyone dresses up in their most colourful hippy wear and the area fills with flower children and ageing rockers, dancing and drinking to local bands – and it probably comes as close to Woodstock as you can get in a semi-rural Surrey town, that definitely wants to identify as a village.
Last year my Mum, Dad and sister all came along. Although well into their mid-70s, my Dad was dressed in a flowery shirt & psychedelic bandanna and my Mum wore flowers in her hair and had her face painted with glitter. We all danced and laughed, drank far too much prosecco and cheered along to all the bands. As it became dark, I remember looking at my parents as they smiled and clapped along to the music, surrounded by my friends and twinkling fairy lights. I felt so much love for my family and so grateful that we were all here together – and I turned to my sister all gooey eyed and slurred “we need to remember this moment”. The warm summer evening and alcohol may have made me sentimental (there were definitely some happy tears), but it is these moments of shared happiness that are so important for all families – and I think this has been a big part of what has kept us close, even through really difficult times.
A different child
My parents both came of age in the 1960s – and they feel very similar about the 1960s as I do about the 1990s. This was their time and I’ve heard all their stories. My Mum bought everything by The Beatles and wore out her shoes by twisting. My Dad was in a band, who were fairly successful in South Wales and even Tom Jones sang with them. My Dad thought of himself as a bit of a Beach Boy and my Mum shivered on the beach as he tried to catch waves in the middle of winter. However, when they married in 1971, they were both still fairly young and innocent and still living at home with their parents in the houses where they were born.
I was born in 1972, just over a year after they were married. My Mum had a long and difficult labour and I was eventually born by Ventouse, looking like a cone headed alien. She has always blamed this on her teeny tiny size 3-feet – and although there might not be much truth to the idea that pelvic size is mirrored by your feet, her obstetrician later came to see her and told her that they wouldn’t let her suffer like that again.
Although exhausted, she delighted in her little cone-headed baby – and as was normal at this time, she settled down to a couple of weeks stay on the post-natal ward. She enjoyed this time swapping stories and sharing jokes with the other new Mum’s. The first sign that there was anything out of the ordinary, was when she was unexpectedly moved to a private room. She was not given a reason for the move and was told to place all her linen in a bag labelled ‘contaminated’ – and she felt a subtle change in the way the nursing staff were treating her. Already exhausted and vulnerable from the birth, suddenly finding herself in a room on her own, led to increasing anxiety and the sense that there was something terribly wrong. My sunny natured always ‘glass half full’ Dad, tried to reassure her. However, she continued to worry, even after she was allowed home, especially as she was the only new Mum to be given a follow up appointment back at the hospital.
She also sensed something when the midwife visited her at home – and she asked many times if there was anything wrong or why she had been given another appointment back at the hospital. She was not given a clear answer and was just advised that it was all routine. However, at the follow up appointment, the doctor’s first question was “are you planning to have any more children?”. She tried to express that she had only just given birth and hadn’t given this any thought – and he replied that maybe this was something she would need to think about. This led to her feeling increasingly panicked and again she asked if there was anything wrong or something they weren’t telling her, but he dismissed her worries, although gave her another appointment to see a Professor of Paediatrics.
When I spoke to my Mum about this recently, you could see that she still felt upset about this experience, even stating “I hated that doctor”. He also later turned out to be a parent of another child at my school – and every time she saw him, she felt scared that he recognised her and that he knew this secret information about me.
A few months later, we had the appointment with the Professor, who my parents remembered as a kind and warm man. He explained that when I was born they noticed I had hernias – and following this they checked my chromosomes and found out I had XY chromosomes. My parents were not given any name or much further information, but he explained that I should never find out and that they shouldn’t tell other people. They were told they would repair my hernias after I was 2-years-old, unless there was any indication that this needed to be done more urgently. When I was a bit older, they would tell me a story to explain why I couldn’t have children and didn’t have periods – and that in the future there would likely be womb and ovary transplants. My parents asked if there was anyone else, but they were told that this was something incredibly rare and it was unlikely that there was anyone else in the area.
Just before my first Christmas, my Mum was at home alone, whilst my Dad had gone out to watch the Football (he is still a huge Cardiff City Supporter). I started crying and although my Mum tried to soothe me, nothing worked and the crying turned to screaming. When my Dad returned home, they took me straight to A&E and I was immediately admitted and underwent an emergency hernia repair. When I came out of surgery, the nurse looking after me on the ward stated, “it’s a good thing I put her in a blue Babygro”. The distress caused by this comment, especially following the rush to hospital and emergency surgery on her three-month-old baby, led to my Mum fainting. My Dad caught her before hitting the floor and she wasn’t physically hurt. However, emotionally she was also falling – and there was no safety net or support available to catch her as she plummeted into the unknown of what it meant to have a child with a variation in sex development. This wasn’t an experience she could laugh and joke about with the other new Mum’s. This was something more than whether I was sleeping at night or teething – this was something they had been told should stay secret, even from close family and friends. Almost every interaction with health professionals, had only added to their feelings of shame and isolation – as well as making them believe that they must never let me find out. My future wellbeing was dependent on their silence.
We continued to see the Professor over the next few years and my Mum felt so grateful to him for just being kind, that she even gave him my cot to give to his new grandchild. Their circle of support was so small, that he was one of the only people that they could talk to – and they didn’t question any of the advice or information that he gave them and they saw him as the only person who could help. My parents were introduced to his registrar, who later took over my care when the Professor retired. Throughout my childhood and even into my adolescence, he was their only source of information and reassurance.
I recently spoke to my Mum about this time and she described living in a constant state of fear and anxiety, questioning my behaviour, appearance and quirks and worrying about what this meant for my future. She commented that she often felt like she was ‘walking around like a zombie’, going through the motions of parenting, but never fully present. She had been told that I would likely be tall and she worried that even as a young child, I was taller than many of my peers. She pictured me being 6ft4, even though she was only 5ft2 and my Dad barely 5ft7 – and she thought I would tower over my sister. The reality was somewhere in the middle – and although I am on the tall side, I am not quite 5ft9 and even my sister is taller than my Dad.
My Mum also described once taking me to see my GP for a sore throat, likely after shouting far too much on a week away with my school. The GP stated, “maybe it is to do with what she has got, it is probably her voice breaking”. Although my total insensitivity to androgens has resulted in my voice always being on the ultrasonic side of normal, this comment devastated my Mum. Not just from the fear of my voice unexpectedly breaking, but because of the callousness of the remark, with no sensitivity to how this could make her feel or how alone she felt. It was months until my next hospital appointment and my Dad was the only person she could share this with.
When I was 14, I was given the devastating and fictional story of needing to have my pre-cancerous ovaries removed – and I was also told that I didn’t need to tell anyone. The lies and secrecy became an increasingly oppressive silence that impacted on all areas of our family life. I felt deep shame about my body and with no words to express this, it turned inwards and to hatred of my appearance. I became obsessed with the shape of my nose, wrinkles on my youthful forehead and fears that my eyelashes were falling out. My Mum recalled me becoming hysterical after finding another eyelash on my cheek – and I subsequently saw my GP and was referred to a counsellor. My parents were also seen by a therapist at the same unit. But what good is talking therapy, when I didn’t know the truth and my parents were too afraid to even tell the therapist the truth – and we were only able to superficially discuss our worries.
Outside of my family, I also appeared to be a healthy and well-adjusted young person, doing well at school and with a good friendship group. I was articulate and could play the part of a normal happy teenager. However, at home I had frequent episodes of distress. I would cry because I was so afraid that I would never be loved – or because my physical appearance was not perfect enough to make up for what I felt that I lacked. It is only years later that I would really understand how difficult it is to see your child in pain and the impact this also had on my parents. When I was finally told the truth about my diagnosis (see previous blog post https://differently-normal.com/2020/08/03/tale-of-a-good-gp/ ), they also had to accept my anger – as well as the shame of feeling that they had done everything wrong.
Moving forward with the truth
After I was given the truth about my diagnosis, I contacted the AIS support group and arranged to attend a support group meeting. My parents came with me and at the beginning I think they felt that they were coming to support me – and although this was a really rewarding experience for me, I think it was even more important for my parents. For the first time they could meet other parents of children with different sex development – and they were able to share their similar experiences and stories. They found support and understanding amongst other parents who had made similar decisions – and had also clung to the advice they were given, not questioning & just feeling desperate for any guidance. They looked around the room and saw other young people like me – and even though there was a lot of hurt and pain, we were not broken. They could see that there was no reason why any of us should feel ashamed – and that we were all imperfectly perfect people, starting to find our own voice.
Family relationships are rarely simple – and although we were able to take the first steps to rebuilding our relationship, we continued to have conversations that were incredibly painful for us all and the scars are still there. But we are also very much involved in each other’s lives. As a family we are noisy and squabble furiously, but there is also lots of love, warmth and fun.
My life is now good, I have a job that I love and I’m married with the most amazing son through adoption. Although I can recognise the mistakes my parents made in keeping the truth from me for so long, I can also recognise that their love and support, even during the most difficult of times, is a big part of why my life is now good. Even though they were made to feel that my diagnosis was something shameful and should always be kept secret, I was always loved. There was always someone to pick me up when I cried, my Dad would play with me for hours (and only now as a parent do I understand the patience needed to play schools for hours) and my Mum would sing me silly songs, which is a habit that I have now inherited with my son. My childhood was full of stories, magic and imagination and all of this gave me resilience.
The family as a therapeutic resource
I now work with children and families, possibly because these experiences influenced and directed my career choices. When I see young people, I am always aware that it can be incredibly difficult to really make a difference to their life, if support is not also offered to the whole family. I have seen the importance of family therapy, for helping parents draw on their strengths and work together to support their child.
I do wonder what difference it would have made to my life, if my parents had been offered support. If they had been able to meet other parents and had been encouraged to talk to people they trusted. If someone had given them the words to talk to me about my body – and instead of silence, I could have been helped to understand that although I was different, this was no barrier to having a good life. I could have been supported to understand that I should not feel ashamed and that there was nothing about me that needed to be kept hidden.
Even today it is difficult for parents of children with different sex development, to get the support they need. In the UK, it is now advised that children should be told the truth about their bodies, but parents are not always given the words and narratives to explain things in an age appropriate way. It is also advised that specialist psychological support should be available, but this is rarely adequately funded. Far too frequently, parents are still depending on a yearly appointment with a doctor or surgeon, for all their information and advice – and there is very little support for the other 364-days of the years. This leaves little time to discuss the many issues a family might face or to have the difficult conversations that are sometimes needed. I worry that this can lead to simple solutions being given for complex problems, possibly as the time to just sit with a parent’s distress, is not available.
Most parents love their children and this is hugely important for helping children grow up to be confident and resilient. However, love is not enough and parents also need support – and I do wonder if family support could make the biggest difference to the wellbeing of children with different sex development. With the right support and funding, the child’s family can become the most powerful resource, for developing an environment where a child can grow up without stigma and shame. This is where support for groups like www.dsdfamilies.org could make a huge difference to the wellbeing of families facing these complex issues, helping them to understand that surgery and silence is not the only option.