DSDvoices: Turners syndrome, healthcare and identity

Guest blog by @soulfoodie, Jennifer Milligan

Part of connecting to other people with intersex conditions/DSDs is exploring the often deeply painful experiences that go along with these conditions at the hands of the medical profession. I hope ok to write a post exploring my reflections on having a DSD and issues of trauma. This will of necessity focus on my own experiences but I hope they can be useful.

When I was diagnosed with Turners Syndrome  at the age of 11 about  35 years ago. I was sent out of the room while the doctor explained the condition and the full implications to my mother. I While I was told initially that there would be only issues with my height, I instinctively knew there was far more about the condition I was not being told, especially due to my mother  being in obvious distress after she had been told. I was deeply concerned about what exactly the full implications were and if somehow my life span would be impacted.

Several months later we learnt abut menstruation at school. Somehow I knew almost instinctively that this was going to be an issue for me. Some part of my 11 year old brain knew I had to get answers and that something was not right.

That night I told my mother I had learnt about menstruation at school. She burst into tears and explained I was infertile because of my Turners Syndrome. I really feel  for my mother having to explain the condition to me. The medic who gave the diagnosis should have insisted I was told at point of diagnosis – however the gap of several months in relaying this information has had a long term effect on my relationship with my parents and my ability to feel in control of information about myself. I should have been trusted at the age of 11 to be able to process this information. 

I need to note my diagnosis came  a few months after my family moved back from Ireland to London after several years so there were a number of other things going on in my life I was trying to process . I appreciate this was not an easy period for my parents and they did the best with the information they had. 

But this was just the beginning ….about this time I started attending a Turners Syndrome paediatric clinic. I would attend until I was in my late teens. As part of attending this clinic I was put on oestrogen at about the age of 13 to help put my body through puberty (I had a year on Oxandrolone to give me a final growth push and  could only begin on Oestrogen after this) . At the time I really did not want to go on hormone and protested. I did not see the point of the changes it bring to my body and I could not relate with them as they felt like something that I was being put through by others, particularly male medics. I am now grateful I did get this treatment and realise it was for the best but remember how I felt at the time.

The hardest part of my treatment as a teenager was this- the middle aged male consultant who treated me would examine my breasts and genital area every visit to the clinic (which was reasonably regular) and make comments about how he though I was ‘coming along’. At least once he did this in front of a group of medical students. I  do not want to ascribe motivations for this but this was deeply inappropriate even in terms of  respecting my privacy.  I know friends who did have to go through this but the examinations were done by a female nurse in a private area –  still not pleasant but at least more appropriate.But there are also issues of where the power was in the relationship. I was a female  in my mid teens in a position of patient and the consultant a middle aged man in a position of authority and trust. I was not given the option of objecting be being examined by a man and I do not know what would have happened had I done so. I was supposed to feel gratitude for getting treatment and be compliant. It has had a serious long term effect on how I view myself as a woman and how I view my sexuality. It shut it down. I am still highly protective of my body and do not feel comfortable with intimacy.

Now I am willing to give the benefit of the doubt to the consultant and say that what happened was more badly thought out and inappropriate than actually outright abuse. But I have to admit that there are times I do see it as abuse (and a friend of mine with Turners Syndrome who I discussed this with says that it is important for others to take into account how I perceive these events). But what happened should not have occurred and it left me feeling as a teenage girl like I had no rights over my own body or sexuality and that I constantly had to justify to myself that I was female enough. It took me over 30 years to  acknowledge how traumatised I had been by these events.

Over the past five years I have twice  raised with the hospital that this should not have occurred. Both times they have not really engaged (the second time they said it was outside of time period they could deal with but if I wanted too I should take up with police). All I actually wanted was some form of acknowledgement of how this treatment made me feel and that it should not have occurred. 

I have realised because of various events over the last few months how deeply affected I have been by these events and how they have informed my feminism and how I relate to the world. They are part of who I am and my history. They help me to relate to other women and empathise with them.

So where does this fit into current debates on intersex issues and how people with DSDs are portrayed? Why I am writing about this? It is because I see the pain I feel at these events  in the lives and experiences not just in other women with Turners Syndrome but other people with DSDs. We all have to contend with so much misinformation and misunderstanding of  our conditions. Mine is just one story. I know several friends with Turners Syndrome who have even more traumatic stories. And now we have to contend with the misrepresentation and misappropriation of  them by queer theory and certain strands of transactivism. 

The worst thing I could have been told during my teenage years was that I  was not female because I have Turners Syndrome but that I was a separate sex or on a spectrum of sex. This would have been especially so because of the treatment I was receiving at the time. Yet I routinely see women with Turners Syndrome used on current debates on sex and gender on social media especially twitter as as a separate sex by people who have never met a woman with Turners Syndrome In order to justify the queer ‘sex is a spectrum’ argument.  I make a point of  responding to such tweets to point out Turners Syndrome only affects females. On many occasions this does not go down well. One person got indignant when I told them that I did not want to have to put myself into a ‘third sex’ category on government forms . They did not like me telling them that as a person with a DSDs I found their behaviour deeply unhelpful . Only a few days ago I was told by someone on twitter that I ‘identified’ as female. I found this particularly offensive for a variety of reasons, not least firstly because I do not have the first idea about what it means to identify as female and secondly that person was implying somehow my fellow women with Turners Syndrome are not female but have just chosen to identify as such. I can tell you this is not the case. The first time I was ever called a t*rf on social media was when I pointed out various things about Turners Syndrome. I find this telling.These people on have no idea about my personal or medical history. I doubt that if they knew they would care.

I also see the contention within certain strands  transactivism that somehow gender critical people are policing peoples genitalia. As a woman who has actually had to deal with this I find this a best amusing. 
There can be other issues relating to having a DSD that get overlooked in current debates. Turners Syndrome, like many DSDs, is a condition that does not just require treatment during childhood and adolescence or the point of diagnosis. It is a life long condition with a variety of health issues that will require life long monitoring. This can be emotionally difficult to deal with.   For example it can be difficult to deal with the regular hospital appointments you are required to attend – particularly when you are dealing with different doctors. who are not familiar with you or your medical history. I know some friends who stepped back from engaging with the medical profession because it was so stressful for them. This can have direct implications for their health. But I understand why they have gone down this path due to bad experiences.

I often feel that I can handle the health implications of Turners Syndrome and can certainly deal with the fact I am infertile. I can even accept that I have had to be on various forms of HRT for the past 30 years (with all the possible risks that involve).But I cannot handle is the growing amount of misinformation about Turners Syndrome and having this condition co-opted and misrespresented by people who do not actually care what myself and others with the condition have been through.