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Becky Roche - My Experience of CAH

OK where do I start with CAH.  When it comes to quality of life it has had it ups and downs and when they are down they are really down.  From a young age I never really knew what was wrong with me all I knew was they was something missing in my body and it made me sick.  And I spent a lot of time off school and missed a lot off life when I was growing up.  Getting older it was still the same in and out of hospital but not as often as before.  But still having to go to the hospital every few months made it very hard to get on with things and the constant fear of going in to hospital made it hard to plan things.

Even now at 21 years of age it is hard even to the point of going away, have I got the right amount of pills with me, what happens if something goes wrong and I have to go into hospital will they know what to do for me, just things like that.

Physically I am OK, a little over weight but that’s just one of those things. I can still run walk, dance and any thing else I want to do. Physical appearance is a total different ball game. Because I am so well built, have facial hair and a very deep voice, I have the appearance of a man, which is a hard thing to deal with.

Psychologically CAH has so many different levels. The first one I think is, knowing that I will always have to take pills and for me at times that is hard just because of things going on and I forget.

The next is being different from other people, having the deep voice and the facial hair the constant looks and comments from other people, things like is it a he or is it a she, or he/she and any others you can think of I have heard it all.

I also had the added bit of being a teenager, having all the thoughts and feeling’s that you get anyway just feels more complicated because of what people say.  I want to be accepted by others for how I am not just what they see on the out side but I guess that goes for a lots of people.

I think the next one is relationships with people, which has been one of the hardest because the males have always seen me as one of the lads. That is because of the physical appearance because I look more male than female.  I have always wanted to fit in somewhere and I have perhaps taken on the male persona just to fit in.  Females I have found seemed very distant from me, as they do not know how to take me.

And I guess that brings me onto gender identity.  I have always known that I was female but just have had a male outlook, like things I played with when I was young and I like cars and things like that.

When it came to personal relationships like boyfriends / girlfriends I was always very frightened because I knew that when I was young I had surgery to make ‘it’ work in the right way and look normal. And as far as I know it all works fine I have ‘openings’ in all the right places and I have been told that ‘Yes, it looks normal’.  The only slight problem I have is that the ‘opening’ is a bit small but that could be fixed with use of dilators. But that’s not a problem because that all can all be done at home.

I am glad that my mum and dad had it done then, as I don’t think that being older I would have been able to cope with it, the thought of someone cutting and slicing in that part of the body makes me fell sick.  Having to work out if I am male or female, do I want the surgery at all?  However I do feel very sorry for those that have had unsuccessful surgery or by being given the wrong gender identity.  That must be hell in itself and those whose surgery that is a complete mess and no feeling at all.

I have never been comfortable with male personal relationships.  I think I had my first boyfriend at 15-16 years old and that was a big thing in itself as I did not understand what anyone would see in me.  But it was good for the first few months and we had lots of fun but nothing went farther then kissing as I was frightened of anything else because I was not sure if at that time ‘it’ all worked and looked normal.  There was also something else in the back of my head that was telling we that this was not right for me.

Then just after my 17th birthday I realised why I had these thoughts in my head where I doubted my own sexuality and then realised that in fact I was gay. That brought problems to thoughts and feeling’s of my own and worrying how other people would react.  My family reacted really well and where supportive and so have my friends.

I have been asked many times ‘Do I think my sexuality has anything to do with CAH?’ to be totally truthful I have no idea.  It’s been asked ‘Am I gay because I feel more male than female?’ I don’t think that’s it at all so this one I will have to keep thinking on.

I think the biggest moan I have about the whole CAH thing is the lack of knowledge by the medical profession.  And the way they make you feel and the way they talk to you.  At the age 5 or 6 I asked the Paediatric Endocrinologist in London why am I so fat and is there anything I could do about it and his answer was “The only thing we can do for a fat cow like you is sew your mouth up” and it was like this all the way through my childhood.

I then moved to Devon when my mum and dad split up. I had a new doctor and he was very cool and understanding, he told me that there was no need for me to go into hospital as often as I did because I could have at injections to help me cope with the adrenal crises and that would help me.

I then went though 2 years of not taking my pills, only taking them when I knew that I was going for my check ups. He then realised what I was up to and gave me the choice live or die, he explained to me what I was doing to my self by not taking them. I am still having the effects of it now. I got to 18 and had to change doctors again. I had one that didn’t seem to care at all.  I would go in and see him and he would take blood and that was it. I was not getting on at all well.  I was also going through life knowing that I was gay and had no one to talk to.

A TV programme was on called “Is it a boy or is it girl” I watched it and it helped a bit.  At the end of it there was some information for a support groups web address. I contacted them and found out that there are lots of people like me all over the world. And people they that understand what I am going through.

I then found out that there was an Adult Endocrinologist in London that specialises in CAH and am now seeing him and his team.  He and his team are very good, they are very down to earth, they tell you what they know and what’s going on.  It’s the first time in years that I have had that, I am now at a bit of a cross roads as I cant get all the levels of hormones in my body right so the next thing for me is to have my adrenals out.

 © Becky Roche 2002

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