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Help and support

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Ben: I started taking the Dihydrocodeine to make myself feel better. I started taking a lot of that; then smoking marijuana, doing speed, E's, acid...and all of that would take me away. It would take me away from all the hurt and just the feeling bad... I just got stuck into that, and that is what I done. I didn't know how to survive really any other way... I used to see psychologists and stuff, but they really didn't help, as I just thought: 'Well, seeing you is all well and good, and talking to you is okay, but you can't take away what's wrong with me."

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Catherine: Those awful stuffy, square Haemophilia get-togethers! Where everybody drinks a lot, smiles at each other and pretends to be having a good time, but they're really not. And we're Von Willebrands, we don't know whether we really fit in and don't know how to deal with all that avoidance. There's so much avoidance at those meetings.

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Dave: I was in two categories because the Haemophiliacs, at that stage, were blaming the gay community for donating blood and getting infected that way. But I was in the two camps you see, because I'm a gay Haemophiliac. So I thought: 'I'm not only a Haemophiliac, an HIV positive Haemophiliac, but a gay Haemophiliac as well. I'm the only one!' Which is quite bizarre - when you're growing up and you're coming to terms with being positive, and then trying to come out as well - oh, it was quite difficult!

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David: We had this meeting, and there was myself and about three or four other haemophiliacs - all of whom I know, most of them younger than me. Prof Bloom said: 'Well, there was this problem' (which we were aware of) and he couldn't say what was going to happen, but he thought it might be a good idea if we tried to form a help group. We gathered together and set up the group, and it was agreed we'd have the next meeting in a room in a pub called the Birchgrove. That is, of course, why subsequently, when we did set it up, the organisation became known as the Birchgrove Group.

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Haydn: We were in the waiting room outside, waiting to go in and so forth, and we just decided we'd all wait for each other; and whatever the results were we'd go and talk about it and we'd have a pint in the pub opposite called the Birchgrove pub. We decided that we would keep in contact and we would meet up once a week, or once a month, to see how we are and how we're coping, and if there was anything we could do for each other; and maybe even send out some kind of memo, or put some notice board announcement in the unit, to suggest that if anybody else had been given this information, that they join us at the pub, on a Friday evening or what-have-you, and talk about it if they so chose. And it seemed to snowball...

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Joseph: I had a consultant whose belief really was that, by providing psychological support, you emphasised the need for it, and that that could be a negative thing. But, in all honesty, I really think it could have been a useful tool to help to cope with daily life and living with the condition.

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Mick: 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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Owen: I remember seeing one doctor. I'd gone up about something else, which was a very small thing, but what I think I had done was I had gone up there because I wanted to talk to somebody. I asked him about AIDS and what he thought, and he said to me: 'Look' he said, "They're telling you you might die, you might not. They might find some sort of treatment for it, so hang in there and try and think as positively as possible". And that's all he said, and I remember saying, "Really?" Because up until then I'd just been told you were going to die; the media tell you, the doctors tell you, everybody tells you. But I will always, always be grateful to him because he actually did give me a bit of hope.