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Mick
‘I've had a more exciting and fun filled life than most...’

Mick

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Life before HIV: I remember thinking at the time I wasn't quite sure why I was in a special school, because, apart from having bleeds, in the gaps in between the bleeds I looked, and I suppose appeared, and I felt, like a perfectly normal, intelligent young person. I could be taught things, if they could be bothered to teach me things. But I was just dumped in classrooms with people with severe mental illnesses.

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Finding out: It wasn't till 85, and receiving a diet sheet through the post from the hospital. It was literally one piece of paper. I can't remember the exact wording, but the top of it on one side it says: "If you are having symptoms of HIV, you need to eat this sort of stuff"; and on the other side, it says: "If you are having symptoms of AIDS you need to eat this sort of stuff". I remember being shocked at getting it and thinking - why the bloody hell have they sent me this? Silly arses, they've cocked up again. Threw it away. Got on the phone straight away. Phoned the hospital up and said "You've sent me a diet sheet for AIDS and I just want to know why?". And they said they can't possibly talk about it over the phone, I need to make an appointment and come in. I said: "I want to know now if I've got AIDS or not". "Can't talk about it over the phone, you need to make an appointment, come and see the doctor". So I put the phone down on them and phoned my GP up straight away and he said: "We got a letter off the hospital about a year and a half ago. We just presumed -" (which you would do) "- that the hospital had told you".

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Intimate relationships: I was very rarely on my own without a girlfriend, but they wouldn't last more than two or three weeks. Because as soon as they got too close, it was like - no, that's it now, bye-bye! There's no point having a long term relationship because I'm not going to get married, I can't have kids, I'm going to be dead. So I'd just have my two or three weeks of fun and then...I wouldn't let anybody get close to me at all.

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Secrets and stigma: 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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Help and support: We had a letter through the post from Birchgrove. I had never heard of this Birchgrove before in my life. 'Come and join us on our self-help weekend... and nancy-pancy...let's have a chittety-chat and meet others in your position.' I thought, I ain't going to that crap! And Caroline says: 'You've got to go, those are people in your position. You need to talk to other people; you don't talk to anybody.' I said: 'I don't need to talk to anybody. I'm fine!' Anyway, she dragged me there, kicking and screaming, to Manchester. It was just unbelievable! It was an eye-opening experience to sit there with 30, 40 other haemophiliacs who were thinking and feeling and saying exactly the same things that I'd been thinking and feeling, but wasn't saying to anybody else. It was nice to know that there were other people out there who felt as pissed off, angry, depressed, whatever...about the situation, and I wasn't just on my own and loopy. And it was okay to laugh and joke about it!

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Hepatitis C: I'd never really blamed the hospital before about the HIV and the Hep B, but I think after that letter it was like - you were giving me frigging everything, you know? You give me Hep B, Hep C, HIV. It just keeps coming. So I distanced myself from the hospital quite a bit.

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An unexpected future: I certainly got to the point of thinking - well, I'm healthy, I'm quite well. My CD4 and viral load's really good. I might not die actually, which is quite a scary thing when you've been living for so long thinking you're going be dead, and you haven't got to do anything, you haven't got to plan for your future, you haven't got to plan and think about retirement.

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Telling this story: I think it needs to be told. I think for me it's just the fact that there's going to be a lasting memory of a good portion of haemophiliacs who have gone through the same as me. Yeah, we've had little media stories here and there, but nobody really knows the whole truth of what's happened; nobody really knows the whole story; and nobody really knows how we all have gone through it and what's happened to us. Whereas this is a sort of an everlasting audio documentary, I suppose, of what exactly we've all gone through. You know, when you look back at it, it's been said, on days in parliament, it was the biggest NHS disaster in NHS history. But nobody seems to want to acknowledge that; nobody seems to want to do anything about that; and I think this is probably the only thing that will still be there when we've all gone. That and the Birchgrove stone hopefully!

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Personal reflections: Yes, it's been hard and traumatic, but because of what's happened to me, because of the illnesses and because of the fear of dying, I've had a more exciting and fun-filled life than most people will ever have. Because we've lived life as in - I'm going to die, so let's just do what we want! Sod the expense or sod the repercussions!