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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.
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.
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.
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.
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.
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.
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.
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.
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.
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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