In late 2018, a friend of mine who also has Turner Syndrome made me aware that on a facebook forum run under the auspices of a support group that parents were posting intimate details about their daughter’s puberty. This forum had at least several hundred members. I shared her concerns about these posts for a variety of reasons.
1. As people say- The Internet is forever. This information could be found and used against these girls at some later point. This is a particular issue (which I will elaborate on) especially as it is not the girls themselves posting this information.2. While the forum was supposed to be open to only those affected by Turner Syndrome, we are all aware of issues around catfishing. It had a large membership so hundreds of people would have seen this post.
3. Most importantly young women with Turner Syndrome have the right not to have their sexual development and bodies discussed by others with no connection to them , especially by strangers on a public forum. It is just incredibly inappropriate. Firstly, It sends the message our bodies, particularly our sex characteristics are ‘not normal’. Secondly it sends the message that our bodies, especially our sex characteristics are fair game for discussion and judgement by strangers and we have no right to have our privacy respected. Thirdly it sends the message that our bodies, especially our sex characteristics are not ours but are controlled by others – namely parents and medics.
These are all incredibly dangerous messages to send, especially to young women at a vulnerable time.We rightfully understand issues about safeguarding and not sharing sensitive information about minors online. My friend and myself tried to respectfully raise the issue of how appropriate these types of posts are on a public forum, even if it is closed. Even if the membership of the particular forum was only women with Turner Syndrome and parents of girls /teenagers with Turner Syndrome all the issues I have discussed remain. We made the suggestion that parents who have such questions should either contact te support group directly via DM or email. This would allow them to get support while respecting their daughter's privacy.
But the head of the support group argued that these posts were appropriate.Which brings me to my final issue. These type of posts were deeply triggering to me as a woman with Turner Syndrome who had to deal with deeply inappropriate treatment from my endocrinologist as a teenager. I have discussed this previously but just to recap. Into my mid teens my middle aged male endocrinologist would examine intimate parts of my body and say things like ‘coming along nicely’. He did this once in front of a class of students. This endocrinologist remains a highly respected and influential figure.
As I have said before I am willing to accept there may have been no malice in my endocrinologist’s intentions. But it was at best deeply inappropriate. It has left issues of trauma and feeling disconnected from myself as a woman. It could be argued to be a form of abuse. I tried raising the issue of the long term of what happened to me with my Turner Syndrome clinic and the hospital I received treatment at back in late 2014. I send an email to the doctor who headed the clinic at the point (who I think is a genuinely good person who has the best interests of women with Turner Syndrome at heart). These however came to nothing.https://aturnersyndromefeminist.tumblr.com/post/104773636206/update-on-raising-issue-of-my-treatment-as-a
There is a long and inglorious history of the bodies of women with Turner Syndrome being paraded in medical literature in photos going back to Henry Turner’s original paper in 1938 . In my discussion with my specialist back in early 2015 he raised the issue of the use of medical photos of women and girls being problematic and that women affected had a right to an apology (just to note – he is not the endocrinologist who treated me as a teenager and shows he understands issues of privacy and appropriate medical conduct). It also has to noted the behaviour of some male medical professionals toward women and girls with Turner Syndrome needs examining (and I am looking right back to Henry Turner himself – I wanted to cry when I read his paper when he explained the examinations he performed).https://aturnersyndromefeminist.tumblr.com/post/108189371456/medical-photos
I am far from the only woman with Turner Syndrome who has had to face this issue.Which brings us to November 2018. My friend flagged up that another type of these posts had appeared on the forum. I posted a comment explaining my concerns about such posts and that the privacy of the girl involved and her right to have ownership of her body needed to be respected. To illustrate this I explained what had happened to me and the long term impact it had. I tried to be respectful.
To which the head of the support group responded that what happened to me occurred a long time ago and no longer happened.There was no word of sympathy or compassion.
I cannot begin to explain how such a response made me feel. But just some points why this was an appalling response.Firstly when someone explains that they have been subjected to such behaviour you do NOT belittle how this made them feel.
Secondly there is no time limit on the impact this type of behaviour has on someone who was subjected to it.Thirdly we are beginning to understand that not holding men who behave in abusive ways accountable damages society and particularly traumatises victims of abuse.
I feel completely unsupported by the support group that is supposed for be for those affected by Turner Syndrome (be they women, teenagers, girls, parents, partners). Worse than that, I feel they actually see me a problem for raising this issue.I wrote a post explaining my pain at the response I received and contacted the society to end my membership and also to explain why the response was so hurtful. But they still held to their position that I was wrong and that they hoped I ‘find peace’. This is a particularly condensending and actually victim blaming response as it makes the reaction of the person to what has been done to them the problem, not what was done to them.
A medical support group is supposed to be there for those who affected by their medical issue. This includes understanding all the historical issues that people with these medical conditions have faced and understanding issues of trauma. It should listen and support people who have gone through traumatic treatments and uphold them. This support group completely failed in this. What is more myself and my friends were completely written off and we were accused of not ‘keeping to the ethos’ of the group. It was made very our voices and experiences as women with Turner Syndrome were not respected or valued.
I got some lovely supportive messages from friends with Turner Syndrome after this incident. I am grateful for this.The impact of Turner syndrome goes far beyond the medical issues that it can cause. It can have profound psychological imapct. Any group that claims to support those with Turner Syndrome needs to show sensitivity to this and to properly engage with us respectfully and take our experiences into account.
Over the last couple of years I have been connecting with people with other Differences/Variations of Sexual Development such as PAIS, MRKH and Klinefelter Syndrome. This has helped me put my own experiences in context and see that the issues women and girls with Turner Syndrome face are part of a larger issue and why educating both medical professionals and society generally are important.
