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Joseph
‘Secrecy became a major part of life...’

Joseph

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Life before HIV: 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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Finding out: In 1983, early 1983, I remember meetings with a number of other haemophiliacs where we were told about a bug that had found its way into blood and blood products. It wasn't really explained at that time what the consequences are, what it would mean for us, and what we should do in terms of changing our lifestyles or protecting others. In fact, I don't even think we were initially told that it would be infectious to other people.

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Expecting to die: When we first found out, there was a great deal of depression. The purpose of life had almost gone out of the window, and all the fighting up to that point to overcome the haemophilia side seemed sort of pretty pointless. And all these ideas where I'd been planning a future - that had suddenly seemed so bright, because I'd got treatment for my haemophilia - I suddenly couldn't see that ever happening. A career seemed a really distant likelihood, and the chance that I was ever going to live to meet a girl that I would settle down with, and have a family with or pursue all those other goals that I'd made for myself in life...they all kind of evaporated, really. It was a very, very depressing time.

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Intimate relationships: Each time I'd made a new relationship, in the beginning they said that they understood the issues; they felt confident with them; they felt strong that they could deal with them. And when the relationship had come to an end, they would all say that they didn't have enough information; they didn't have the understanding; the absolute...the depth of the impact that it would have on them. I'd decided I wasn't going to have a relationship again. I couldn't handle it, it was too stressful. I didn't want to drag someone else into my nightmare, if you like.

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Secrets and stigma: HIV effectively shut me up, because I didn't dare tell anyone I was a haemophiliac, because it went hand-in-hand in the press with AIDS. And secrecy really became a major part of life; in work, in relationships, even within family circles there was very little disclosure about my condition.

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Help and support: 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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Sickness and treatment: Throughout the whole combination therapy cycle there were a lot of side-effects. There was diarrhoea, and then there was constipation, and then there was nausea and sickness, and fatigue, and skin reactions ...But I was just determined to stick with it, in the same way as I always did with medical issues. If I was going to do it, I was going to do it properly.

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Anger and blame: I still maintain they could have come out of the HIV tragedy, and the hepatitis tragedy, with so much credit. It would have really shown this country to have been great and supportive and democratic, but instead I can't help but feel that they really did themselves a disservice and it was very uncreditable actions that they took. They insisted it was a unique situation that we found ourselves in; a very unique medical tragedy had occurred. If it was so unique, then there shouldn't really have been too much of a problem with them taking unique and very supportive action....

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Compensated?: We had no choice really, but to accept the levels of payment that they were proposing, because if we didn't accept them, it had been arranged that legal aid support would be withdrawn. So there was no option to pursue a legal case for compensation. And the amounts that they provided I felt were frankly an insult to the challenges that were facing us. The structure they created meant that each and every time there was an issue that was facing us, we basically had to go and ask for charity, to help deal with the situation.

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An unexpected future: When we first found out there was a problem, the suggestion was that you'd be lucky to have a couple of years. Then the goalposts got moved and we were told it was probably more like five years. That's when I started to take on board the conviction that maybe it might not be five years; it might be six, it might be seven; it could ultimately come on very, very quickly and it might be a matter of a month or two. And, with not knowing that, I had a constant struggle with it admittedly, but I still had to aim for the longer term.

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Telling this story: It's draining. It really takes you back on a rollercoaster ride through all of the illnesses, all of the emotions that you felt. You get flashbacks and even to a certain extent, I'd say, almost a panic attack on a couple of occasions where the intensity of the emotion and sadness, the disappointment, the disbelief that you felt, has come back to us again. It really is lifting a lid on something that is normally kept very tightly locked away. It's purely a survival mechanism.

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Personal reflections: At this point it's very hard to understand if there was some sort of plan to my existence, and to a certain extent you've got no choice but to assume that there must be something better than this to go on to one day. But if there was some kind of divine figurehead overseeing everything that was unfolding, I still don't get the plan, because I don't see what I'm supposed to do now I've survived to this point.