64. And why in the end - 'medical issues' may not be the biggest challenges women with TS face

Having written all I have in the previous post, I would say that while the medical issues are highly significant I can truly say that the deepest impact that Turner Syndrome has had on my life has not been medical. I have been inspired to write this by disability training I received at work and the amazing facilitator who said it was not infant polio that had disabled him but society. The session certainly got me thinking and I sincerely hope that I carry it through in my dealing with others.

Pt. 1- Little woman syndrome
Firstly there is the issue of height. Personally I can cope with being five foot! There are only minor inconveniences attached to this, which I can get around. I have a small ladder at home to get into cupboards and use kick stools and ladders at work to reach items on higher shelves. The only time that it does get to be an issue is on public transport. As I have to commute through central London every day I frequently have to stand. However I cannot reach the bar to hold on while on the underground (although I try always to move down the carriage!) and if I am stuck by the door people frequently lean on the pole which people are supposed to hold on to. I also occasionally have issues in supermarkets, but not so often it causes significant inconvenience.

I have an aunt who is about 4’ 8” who has been a role model in being a strong, intelligent and independent person. My height does not affect my intelligence. It also does not affect my physical stamina. I am quite active, and regularly go for walks. I am able to push heavy trolleys as part of my job and handle very large volumes. However, my height does seem to be an issue for others. I call this ‘little woman, little mind’ syndrome.

People seem to think it appropriate to comment on your height. Lucy recalls that once a person in the street told her ‘Hope you don’t mind me saying but you are xxxxing small! I know that some women with TS get unwanted attention while in public because of their height. I could tell several stories about incidences that have happened when I have been with a group other Women with TS.

Sometimes there can be good natured affectionate teasing. It is important to take this in the spirit that it is intended. Lucy has many good stories about comebacks she has made at people who have tried to make an issue of her height, which turns the table on the other person and shows that she has confidence and self-worth enough not to get annoyed. But it does get wearing to have your height constantly made an issue of. Sometimes comments can be more barbed or pointed.

Even more seriously people can assume that because you are smaller that somehow you are physically incapacitated or some fey Victorian ‘invalid’. More significantly because you are the same height as a child, people assume that you have the intelligence or capacities of a child. They either patronise you or write you off. What is more painful about this is the fact that some people who I am close to and who I thought would know better do it. This is part of a larger issue of women being infantilised within a patriarchal society where women still struggle to be taken seriously.

2. Infertility
I could discuss this all again but will just refer to the post I wrote on this topic! http://www.june42.blogspot.co.uk/2010/04/22-thoughts-on-infertility.html

But again I would reiterate that infertility is seen as something which has to be a major source of pain for women with TS that it has to be ‘fixed’ and our primary interest is in ‘fixing’ it. As I wrote in my previous post, I do not have a serious issue with my infertility. I have to be honest and say that I would probably not have had children if I had been fertile and I am not the only woman with TS that feels that way. I acknowledge that I have friends with TS who have been devastated because of their infertility and I fully acknowledge and honour that.

A couple of things that have happened within my circle since I have started this blog have shown me that fertility issues can affect any woman and it is far more devastating to have to confront these issues when you are older and when they were not expected. I also have had the great joy of being allowed to be a significant part of my dear nephew’s life by my sister and her husband. It allows me to know that I have something to contribute to the next generation without having to be a mother myself.

3.And AOB! In my previous post I spoke about other health issues that can affect women with TS. These can be serious and indeed life threatening (particularly the issue of what can happen to the heart as we get older). Yes, women with TS do often have to deal with more health issues than the so called ‘average’ person. However, we are not the only group in this situation. Many people are dealing with health issues (be it physical or mental) - and often they are dealing with more than one issue. But again, we are not invalids. We are usually good at looking after ourselves and our health (or at the very least are no less bad at it than the population at large). We do not deserve to be stigmatised or made ‘a problem’. I began this post by mentioning the disability training I had recently gone on. The facilitator made it very clear that we must be willing take responsibility for our needs and care. I hope I do that I do.