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Catherine
‘I just went round the angriest young woman ever...’

Catherine

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Life before HIV: Our whole life revolved around either bleeding or spending time with family. So the time we actually had to make friends, and to spend time idling on street corners, was less than we wanted. I always felt like there was something not quite right, because maybe I always knew - at any moment this could be taken away from me right now - so I never fully relaxed right there, in the moment, stood under the street lamp, with a few local teenagers, having a laugh and having a smoke. It was always there, just to be taken away.

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Finding out: He said, 'Well, I'm very sorry to tell you that's she's got HTLV 3.' And my dad went: 'Oh thank God, I thought you were going to tell us she'd got AIDS then!' And my mum went, 'Jim! Oh, Jim!' Then she started whacking him on the arm. And she's saying, 'He does mean that, that's what he does mean!"

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Expecting to die: He said that I wasn't to be intimate with anybody, not to kiss anyone passionately, not to consider having sex. Absolutely not to think about having children, ever. And that I was probably to expect to live eighteen months at best.

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Intimate relationships: There has been this opening up of all the boundaries; you can do other things without putting yourself at risk. That's why it is so horrendous; that if somebody doesn't ask you, they are therefore responsible if they contract HIV off you. That is so wrong. I know it, in my heart, that it's so wrong. You are responsible for not opening your mouth and saying it: 'I am HIV positive. If you want to walk away, that's fine. I totally respect you for that, because if I could, I would.'

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Help and support: 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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Hepatitis C: I had to do it! I wanted to get to the end and I wanted to be Hepatitis C negative. I'd rather die having my teeth pulled and my nails pulled out than go through that treatment again! The reality was I couldn't keep my eyes open. I could not function and I was surly and miserable and tired all the time. I just wasn't safe to do anything on my own. I don't think I've ever felt so disorganised or totally and utterly useless.

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Anger and blame: I was just a very needy, very desperate, very angry young woman, who was going to rebel against everybody and anything that came in my path. I was challenging life to come up and kill me: 'Come on, I'm going to prove it - you can't!' I just went round the angriest young woman ever in that time.

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Personal reflections: I got to the stage last year where I thought: "I cannot pick myself up again. I can't do it; I don't want to do it. I've done it too many times; what's the point? Something keeps knocking me down, why keep doing it? Why not just lie down and say - OK, have me - go on, take me, do what you like - I'm sick of it.'' And then something inside it just goes: 'Right, you ready now? Come on, chop-chop, up you get!' And you do it. I feel like I planned so long for something that never happened. But I've always planned for it just in case. I don't know how I could have lived it any differently.