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I suppose it is somewhat 'taboo' in my family because it is rather a strict christian one. By that I mean, my mum's side of the family are all missionaries and my mum grew up in another country. So talking about it can be sort of uncomfortable because they do like to talk about it. On some things they are very unfront with how they believe; like you can't be gay, contraception issues and a whole lot of some even whackier beliefs; so with this condition especially I personally feel at the brunt of all their outbursts.
It's proabably just a 'me' thing - the feelings of inadequacy, of not being able to be loved because I'm not perfect, so I've hidden alot of things from other people. I suppose you might say that in my own mind, because I've grown up in this atmosphere, that I have silenced my ability to be able to talk about CAH in such an un-contraversial way. It's the controversy about CAH that generally rubs me up the wrong way; I've got the life threatneing bit down pat. So hmmm, I've sort of told myself not to talk about it. (My school didn't even know until this year - my final year at school - that I am seriously ill)
Most of it is my own fault; I am the one who tells myself that 'being me is not alright' - thats one of the reasons why I admire the fact that you are looking for answers to serve the purpose of finding your place. I on the other hand am too scared.