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Ann Marie and JohnAnn Marie and John

Ann Marie and John

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Finding out: ANN MARIE: We were told when he was seven. I'd actually taken him up to a clinic and I was sitting in the corridor with him, and one of the doctors came out and says, 'Ann Marie, sorry it's taking a wee bit longer today,' she says, 'but there's a lot of the kids have got HIV, and Chris was one of them. But we'll talk about it to you when you come in'.
JOHN: At that point the only thing we knew about HIV was some gay people had it, and they would die, and that's about as much as we knew. And to be told that way in a hospital corridor, and then Ann Marie coming home and telling me about it, we just... We couldn't sleep for days.
ANN MARIE: We just didn't know what to expect, what it involved, how it happened. I mean, 'There you go, Ann Marie, he's got HIV. Bye'.

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Coping: JOHN: When I found out Christopher was infected, I started drinking far, far too much for any normal person. My way of drowning things out. You shut yourself away.
ANN MARIE: You don't want to go out and do things. Where we'd go out with friends, we stopped doing that.
JOHN: We lost a lot of friends. Because they thought we went weird. But we'd go out, and halfway through the night we'd start getting a bit morose, we wouldn't want to talk. So you become antisocial. So we lost loads of friends. And probably they'd be, to say the least, shocked and disappointed that we didn't tell them, but we just didn't feel we could tell anybody.

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Finding out: JOHN: He wasn't told till he was fourteen. By that time we were worried about the possibility of him becoming sexually active, because a lot of young people do. We'd been up at the hospital and I decided when we came back that I was going to sit him down, and we spoke about it then. I explained that he had contracted HIV, through the factor VIII. We really didn't know how it was going to affect him, but he was very fit, and people all over the world were working towards a cure for it. And that he had to think about the possibilities that as he gets older, and if he gets in a relationship, he may have sex, and he could in theory pass it on to a partner, and would need to start looking at safe sex even from that age. That didn't last very long, because he just burst into tears and just asked when he was going to die. So, that was really that.

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Hepatitis C: ANN MARIE: I think that was round about the time that we asked about Christopher, whether he had hep C or not, and the reply was, 'Of course all the boys have got it'. I says, 'Well, it would be nice if somebody told us'.

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Secrets and stigma: JOHN: If I could change things, I wouldn't have had the secrecy. I'd have shouted aloud, I'd have let people know. Because the biggest thing to us was the stigma, the stigma for our sons, the stigma for us. Why should we have a stigma? We didn't do anything wrong. Other people did something wrong. But they encouraged us to keep quiet about it, because it was better for us, and in some ways I think, us keeping quiet about it added to the stress that eventually put the pressure on our son, that he stopped taking the medication. And possibly condemned himself because of that. The stress on him affected his health, affected our health. I would never keep a secret again. Because if you keep secrets, it only affects you. Health professionals told us, 'Keep it quiet, don't tell anybody. You'll be ostracised from the community.' What happened was, we built up a lot of pressure on ourselves, it was a powder keg at times with us. So I'm not going to keep secrets like that again. I would shout and tell everybody, let them know it's not our fault.

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Secrets and stigma: JOHN: We stayed in a small village, where attitudes are different towards things, and if it got out about Christopher's HIV, we might have lost everything and be ostracised in the village. That was the danger - because we worked for ourselves, that people would, we'd stop working, we'd lose our livelihood, and as I say, it was just part of the thing. I've no doubt some people in the village known that he was haemophiliac, would have probably guessed it was HIV. We did keep it a secret. Nobody ever said anything to us.
ANN MARIE: Nobody had actually come right out and asked us. And even if they had, we'd have probably denied it.
JOHN: Yes, probably. Probably lied through our teeth.
ANN MARIE: Oh aye, to save my boys, aye. Because even after Christopher died, we still had Andrew.

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Death and loss: JOHN: A lot of parents lost their kids, and whether you might call us lucky or not lucky, we still lost our son, but at least we were there with him at the time. Which is more than has happened to a lot of people, who lost kids with HIV. He knew he was there with people who loved him. It was traumatic, I can still see it, at night sometimes waking up. They talk about these things but you remember the past, it gets weaker as, your memories get weaker as time goes on. It doesn't really happen. You still remember it.

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Family relationships: It wasn't just husbands that died. I mean take a child away, and there were lots of children died, it took away big chunks of parents' lives, but nobody talks about the parents. Took away big chunks of brothers' lives, because that's still a big thing to him. Took away grandchildren that I could have had. Took away a daughter-in-law. Took away all sorts of things. But the trust never think about that. They only think about mothers. Children, when they lose a parent, don't tend to get on with their lives. Parents can never get on with their lives when they lose a son or a daughter.

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Family relationships: ANN MARIE: My other brother that was haemophiliac, he died two years ago. He never had HIV and he never had hepatitis C either. And at the end of the day even though he never got the virus, he still died.
JOHN: Jim had a long history of, not alcohol but drugs. Some to blank out the fact that he, a survivor syndrome, he didn't get HIV, yet so many people he knew got it, and, he was a severe haemophiliac who needed constant treatment. So he could never understand why he wasn't infected the same as everyone else, considering the amount of factor VIII he got. Then he was having a lot of pain, so he was taking drugs for the pain, and eventually the drugs for the pain hooked him, morphine. So he was quite heavily on drugs. Although I think for the last few years of his life he was clean with drugs. But he felt terribly guilty about other people, his brother. I think he knew about Christopher, I'm pretty certain he did. And the other people he'd grown up with as haemophiliacs, that they were all dead or dying, and he was surviving.