Guest editorials

We are inviting guest editorials from families, members of our care team, and others who work or write on issues that affect us. If you wish to contribute to this series, please send a short outline of your proposed guest editorial to info@dsdfamilies.org

Guest Editorial nr 7, March 2013, The real difference

By Sara (living with AIS)

My advice to any parent with a child with a DSD is to make every effort to meet other parents and adults who live with DSD. It will help dispel some of the fear and anxiety about the diagnosis of your child and give perspective, as well as be a source of practical advice.

My story is from the bad old days, as I was born at a time when there was complete secrecy around DSD both within close and extended families and even with closest friends. Alas, there is still little public knowledge about DSD, so I am sure that many DSD families may feel they have fallen into an abyss. I hope my writing of the bad old days shines a light on how things have changed for the better, and how important it is to reach out to other families and connect with support groups.

I was born with atypical genitalia, and received feminising surgery as a baby and again in early adolescence. I grew up knowing I was somehow different, and unsurprisingly grew up a very introverted child with few friends. I was never told the nature of my surgery, despite my asking. It was only a few years ago that I finally retrieved my medical records from a GP who was shaking with nerves.

I could go on about the needless emotional pain the secrecy and shame caused. The secrecy did not allow me to understand why I felt different, nor to understand my parents’ behaviour towards me. It is the secrecy within my own family that prevented me from finding peace – understanding and accepting my condition - at an earlier age.

Now, like other DSD adults I have ‘come out the other side’ and have moved on.

The real tragedy is that whilst I moved on and now concentrate my efforts on doing the things I enjoy most and am loving life, my parents still live with the very same secrecy, shame, and guilt. This undoubtedly has affected their long term health and happiness. Human beings as a rule hate uncertainty and I have no doubt the medical profession responded by trying to give to my parents the security they craved.

They did this by allowing them to believe that I would grow up like any other girl, which equally may or may not have been true. In my case I started playing with my brothers’ toys rather than my own, playing football and cricket, and displaying other ‘tom boy’ like behaviour which never went away. No amount of intervention and ‘nurture’ changed who I was, Sara, it merely affected negatively how I felt about myself.

These days, perhaps, doctors have become better at separating sex chromosomes and gender identity; ‘atypical’ play (e.g. girls playing football) is considered ‘normal’, indeed it is positively encouraged by most parents.

Whether my DSD influenced my personality, who knows, and to me personally it is of no consequence. Tragically from my parents’ perspective they believe it did and to them it was the realization of what they feared most: ‘did we make the wrong decision?’ The secrecy and their own pride meant they did not receive the support they needed to understand that a child cannot be defined as a decision, nor by a decision.

I sense there is still fear and anxiety amongst parents and the only way to dispel it is to meet others who have trudged along the same path; the fear and anxiety does not need to last forever.

I wish I could have told my parents that and have them listen, as there is much I have to thank them for. They were victims of the conventional medical wisdom and prejudices at the time. Thankfully times are changing.

On a final note, the most striking thing I found in meeting other women living with DSD is seeing how it does not define our personality, nor decides our future. In short we are a totally mixed bunch and would not be any more identifiable than any other bunch of randomly selected women.

Perhaps there is one difference, and that is the amount of compassion for others shown between us.

It is that what makes us special.

Sara