Living Stories: Home page

Life before HIV

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Ben: 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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Catherine: 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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Dave: When we were kids, I used to say: 'Oh Mum you gave me this!' I was quite brutal at times. I made her cry, which isn't a good thing, but I just wanted the pain and the aching...I wanted to be normal, I wanted to be like everybody else.

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David: Haemophilia was very severe in those days; it was life-threatening. For the first ten to twelve years of my life or more, I spent a good proportion of the year in hospital: in-and-out, in-and-out, in-and-out. So although I had quite a happy childhood as far as my parents were concerned (they looked after me, and all that sort of thing), in many ways, it has been a journey from darkness into light, because my childhood was full of darkness, of pain and illness. On several occasions I almost died, and my parents were called in, thinking I was going to die.

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Joseph: Haemophilia, for all its severity, was never a challenge that I imagined I would lose to. I always believed that I could fight back from any bleed, and I could always make life work in my favour. There was always a real self-belief, a determination, and a positiveness.

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Mick: 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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Owen: I was far unhappier than my friends, I know I was, and far less confident. And so my way of dealing with that was to drink more, take more drugs than they did and to just be stupid and loud and fall over and shout and get arrested and just be stupid, and that was what I did. When you're a teenage boy, and you want a girlfriend, you've got to be a man. It's as simple as that. And if you bleed - you're not.