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Ben
‘It felt like this massive storm had started in my life...’

Ben

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Life before HIV: I used to wear this medallion; it's one of the SOS talismans with information on my Haemophilia and my blood group. The other boys used to tease me because I was wearing a necklace...Just that on top of everything else, I used to get really gutted, I used to get upset... I was being teased at school and I couldn't join in with the other boys. So I felt a world apart from everybody else. I didn't really fit in very well. It was difficult. I felt different in myself.

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Finding out: It was night time and mum and dad came to the hospital with my sister. They were all sitting in this little room and someone sent for me and I didn't want to go. I knew it was something that would hurt all of us. I just knew that. I didn't know much about HIV and AIDS. I knew it was bad, I knew it was really bad. I knew you could die from it. They were all in the little room and they wanted to talk to me and I didn't want to talk to them. And this was when my mind started to get incredibly screwed up. From that day on, I was a mess...

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Expecting to die: I used to ask my doctor, I said to him, 'What's my life expectancy? What can you give me?' And he said, "I can't really do that..." I asked him this when I was about eighteen or nineteen. I said to him, "I really just want to get to twenty-one, I want to be twenty-one. After that I don't feel like it matters too much, I just want to get to there.' And the look on his face was like: 'Oh...you know...I can't guarantee any of that for you.'

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Secrets and stigma: 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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Help and support: 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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Sickness and treatment: It was bad back then. I was ill a lot, you know; thirteen, fourteen, fifteen....Sixteen, it started to level out a bit, but I felt terrible and I looked pretty awful as well. I was just ill.

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Anger and blame: Whose fault was it? I don't really know. It hurt as well that my mum gave me the injection that infected me. Because I was on home treatment, my mum would have given it to me. She would have given me that injection. And that just really made me....not angry, but I thought that's just really sad, you know? I know it was for my mum.

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Compensated?: Mum and dad, they knew about that - they kept it in trust until I was eighteen. When I got that money, I just thought, "Oh wow! It's party time now. It's time to enjoy myself." I spent all that money in three years. I had no real responsibility either, so I just thought, 'Let's go spend some money!' It's not like I spent it all on myself either, all my friends had a good time. It was great fun. It was more escapism, as well.

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An unexpected future: I went to see him one day for my next check-up and he said: "Your viral load is undetectable and your CD Fours are higher.' I didn't even take on board how good that was - not for months! I was just so used to being the way I was. And now! I should have been out having a party that night. I should have been out - that was amazing to hear him say that. Since I got ill when I was twelve, I'd had really high viral load, hardly any CD Four cell count at all...I suppose if you've been ill for that amount of years, though, and from an early time in your life, it's going to take a while to readjust and think: "OK - now I'm healthy."

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Telling this story: I was quite emotional. I just felt as though I'd dug up so much, that it was hard to handle all in one go again - you know? At least back then, it was day-by-day, week-by-week...and then last night it just all rushed back, and I started thinking over and over and it really threw me back. I didn't expect to feel quite so emotional.

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Personal reflections: It's so hard to plan now. I made plans before and look what happened! When I was young, like I said, any achievement I seem to have made just got dashed on the rocks by some sort of illness. So when I was a kid I sort of gave up....I haven't given up on life; it's like I've given up on a future.