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DianeDiane

Diane

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Intimate relationships: But it does alter the dynamic in relationships. If I don't feel that sometimes I'm the centre of attention, it won't work for me, because Ian's the centre of attention virtually all the time. And he is fantastic and everything, but it's just like, oh God! So, we have to make sure that I don't just feel that this is all about Ian.

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Intimate relationships: I was in my late twenties kind of talking with, with other partners, or having weekends away in effect having sex education lessons. So a group of women in their twenties, thirties, forties, having lessons on what was safe and what was not safe. It was excruciatingly horrible, because nobody was being particularly honest about what they were doing. Because it doesn't make any sense why would you take risks? Why would you do that? Why did I do it? Because I hated the thought of somebody telling me that I couldn't. I hated the thought that, that suddenly this disease meant that we just couldn't do what we wanted to do.

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Testing: I didn't want to be tested, and I didn't want to know. My thought was, that if Ian only had a short time to live, then I didn't want to know. I don't mean this to sound really altruistic, but I didn't want us to have to think about me as well. I just wanted us to think about Ian. And he never ever put me under pressure. The doctors were great. They'd offer it, they never put me under pressure either. And I just didn't want to know. I didn't want to know.

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Secrets and stigma: Well I couldn't have lied to people that I care about. But they didn't ask. I just didn't feel maybe strong enough. I just didn't want to take on all of their concerns, and to have an altered relationship with them, that went from being friends into the primary focus being Ian's health. So, in some ways it was protective for me, because it meant I could have a life out in the world where the focus of attention wasn't on Ian and his health. But bottom line is nobody asked.

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Disclosure: There was just a gradual Ian fading away, and being less and less able to kind of cope in the world, and none of the dramatic dashes to hospital. People wouldn't maybe necessarily know that there was anything. He looked unwell, he looked ill, but, not with anything in particular. Our disclosure would probably have been significantly different if Ian had ever been in hospital. And he never was. Because if he'd been in hospital, we would have told his parents he was in hospital, you know, that would have happened.

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Anger and blame: In that time there was stuff going on in my life, and I was quite clear that he couldn't have all the attention, that I needed some attention. But if we had a row, he'd have a bleed, he'd get ill. And so there was a real cycle that happened that made it feel that it was very, very difficult for me to be the one saying, 'I'm not okay', because it was almost like the physical reaction in Ian, which he couldn't control, meant that we had to stop talking about me, and get attention for Ian. So that was really hard. That was really, really hard. But I couldn't bear being a martyr. I had to let him know that I was pissed off and angry.

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Expectations: We still don't talk about having a long-term future together, we never talk about growing old together. I don't expect Ian to be around in my old age. And the way that we discuss that is, that maybe after the liver biopsy, the conversation we had was, 'So you're going to be around then?' 'Yeah I think I'm going to be around for a little bit longer.' 'Oh. Cool.' It's that simple. And then, 'Right, cup of tea then.' You develop a way of communicating with each other which is pretty special actually, where you can say stuff like that. Which is really nice. I can't trust that he'll be here. So we still don't make plans for the future. We don't make any plans for the future.

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Children: Diane and Ian tried sperm washing but it didn't work:
It never happened. And I don't actually, I don't blame HIV for it. I think it's one of those things where there was an ambivalence on my part, and maybe on Ian's, and HIV was part of the picture. Ian being HIV positive is not the reason we don't have children. And for both of us it's really important that it doesn't get blamed on the HIV, because that's only part of the picture, it's not the whole one. It's quite sad sometimes at Birchgrove, you look round at this whole generation of really strong women, and lots of them just don't have children. And I'm not the only one who's tried sperm washing, but it just didn't really seem to work for lots of us.

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My own space: But one of the things I did to help me cope with the challenges of not having had a baby and everything that's going on, was I impulse bought a surfboard. And it became something that I just did on my own, went off and did surfing. Because I didn't want anybody to say they wanted to come with me. I just wanted some time on my own in the ocean, doing whatever. And I didn't want to have to talk to anyone else about it, because it was just my own space.