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Secrets and stigma

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Ben: At the beginning, I chose not to tell anyone. I thought, "How can I tell someone? I can't even get control of it in my own head." But it was getting worse and worse, you know, I really needed to talk to someone. And I suppose now I'm at least fourteen or fifteen years old. I had this thing where I couldn't just tell a teacher and go home. I couldn't say: 'I don't feel well.' I couldn't do that.

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Haydn: There was never going to be a bloody perfect time to tell your sons what was happening. But it seemed better to tell them when we seemed pretty reasonably healthy, than to tell them when we were rushed into hospital with some life threatening condition.

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John: But you paint your smile on your face. When you go out of your front door, paint the smile on your face and: 'Hello! Yes, fine, thank you!' And then when you close the door, you scream, scream into your pillow, or cry, and then you do it again the next day. Sometimes it breaks through; screaming at the top of my head: shouting, screaming for help; because you hold it in for so long, it's like a coiled spring - and bang!

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Joseph: HIV effectively shut me up, because I didn't dare tell anyone I was a haemophiliac, because it went hand-in-hand in the press with AIDS. And secrecy really became a major part of life; in work, in relationships, even within family circles there was very little disclosure about my condition.

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Mark: There were children being thrown out of schools because they were HIV positive. There were tabloids screaming about the gay plague. No, you didn't want to talk about this at all. So no, you controlled your information very, very carefully. And in London, it was predominantly a gay thing - they were the only people who were prepared to be noisy about it. Everyone else was very quiet.

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Mary S: He didn't like anybody looking at him, the family, his cousins. He used to be a bit resentful of them looking at him. He always felt inadequate and he felt dreadful about it. He wanted to be like them. That's what he wanted. The resentment was there. He hated what he'd become, he hated everything about it: right from his haemophilia down to his HIV and his hepatitis C that he got.

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Michael: There was an instance at the school where there was a supply teacher that started talking about HIV to children, and, it choked Joanna up, because she thought at the time that I...that her dad had got AIDS. And she sat in the class and cried her eyes out. And the teacher come over, and asked Joanna what it was all about, and she said, 'I can't...I can't...' she wouldn't tell them nothing.

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Mick: Oh no, that was a no-no! You don't talk to other people! I was told in no uncertain terms; I was asked not to talk about my HIV status whilst sitting in the waiting room of the haemophilia clinic, because it upsets other haemophiliacs. So you just didn't. I used to sit there. You could see people who were ill - who you knew - or I guessed....thought....had got Aids...haemophiliacs. I remember we used to sit there, looking at each other, wanting to say something, thinking: 'No, we can't'. Because we'd been told you can't do it.

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Owen: People are discriminated against now, but nothing like! You just wouldn't dream of telling people in those situations 20 years ago. You just wouldn't dream of it, because people were losing jobs, people were losing homes, people were losing families, you know. It's hard to grasp if you weren't around, or you weren't involved then, how frightening it was. It was frightening because you thought you were going to die; but it was just as frightening because you couldn't tell anyone.