Interview 05

Age at interview: 52

Age at diagnosis: 42

Brief Outline:

His current T cells are 600 and he is not on anti-HIV medication. He is happy to be alive now, does voluntary work (non-HIV) and training courses. (Video and audio clips read by an actor.)

Background:

A retired gay health professional with a grown child, who was diagnosed in 1995. At one stage in 2000, he did not want to go on living, and took an overdose.

More about me...

Age at interview' 52

Age at diagnosis' 42

Sex' Male

Background' A 52 year old gay male, retired health professional with a grown child. He  was diagnosed in 1995. 

Outline' A 52 year old gay male, retired health professional with a grown child. He  was diagnosed in 1995. He found it difficult adjusting to the role of patient when diagnosed, and he felt that he was put on the 'scrapheap' after doing a job he loved. At one stage in 2000, he did not want to go on living, and he took an overdose. Although his T cells have gone below 200, his current T cells are 600 and he is not on anti-HIV medication. He has had a number of illnesses which are not clearly related to HIV (e.g. heart attack), but is now well. He is happy to be alive now, does voluntary work (non-HIV), training courses, and has a long-term partner. Although comfortable financially, he would have preferred his career was not cut short by HIV.

(Video and audio clips read by an actor.)

Has moved away from formal religion and feels that his spirituality is about the way he is...

But spirituality is [sigh] it's that being, belonging sort of [pause]… knowing there's a reason but you don't know what the reason is. It's a sub-conscious thing, it's knowing, knowing that [pause] even though we've got a brain to think, even though there are people out there, there are killers, there are terrorists, there are… but the majority of us don't do things like that. 

I think, I think that's what spirituality is. It's that feeling and that being able to live in harmony with everything else, not just human beings, but the world itself. I suppose that's the point I've come to with my spirituality, it's… it's… well it's quite important to me I suppose when I really, really do think about it, although I don't think about it very often. 

As far as organised religion is concerned, I've come away from that now. It doesn't mean anything to me at all. It's just a way of keeping the population in check.

The point I've come to [pause]. Because I haven't just got this virus, my son's got it, my partner's got it, although they're negative, you know, in that sense of the word. But they're living it the same way as I am. We don't talk about it very much , but it's as… it's as much with them as it is with me. That's my spirituality associated with HIV I think. That's the only way I can describe it.

For this health professional and his colleagues it was difficult for him to become a patient. ...

I suppose it's drummed into you [sigh] in nursing, or it used to be, that you didn't go off sick unless you were very sick, unless you were really ill. Otherwise you, you come on duty. I, I was able to… to sort of do that because having been in the Navy that was the sort of discipline we had in the Navy. So I was able to carry that on really. 

So I used to go into work on my dying knees sometimes, but but it was always instilled into you that you don't take time off unless, unless you're really ill. And I couldn't come to terms with the fact that I'd looked after…. my speciality I suppose was the terminally ill. I couldn't come to terms with the fact that this virus was threatening my life I suppose. 

I couldn't come to terms with the fact that I was now a patient and that I had a potentially fatal illness. Maybe I didn't want to, maybe it was denial, maybe… I don't know what it was, but, but I was still in, in professional mode I suppose. In fact, I gave the nurses and the doctors hell for quite some time because... and then in the end I had to admit, and I used to say to them, 'Look, I'm the patient now, I'm not a member of staff', because it worked in reverse. Where you get the doctors and the nurses not actually telling you the whole story, because they think you should know it already. 

And that used to infuriate me, because I'd say, 'Well look, I've come to the… I've come to the realisation now that I am a patient, I'm not a member of staff any more.'

Following on from his adoption he struggles to cope with the loss of people in his life. (Read by...

Ah yeah, well that is something I've never been able to come to terms with. People [pause]… there might be something in my psyche that pushes people away; this is an individual thing. It's got nothing to do with anybody else, you know, but I have never been able to cope with the fact that people leave you, people who are supposed to be close and special, and role models, all sorts of things. 

The first one, of course, was my own mother. Although I don't really… it's not, it's not high on my agenda really, I don't think, think about it or anything, I do get a little bit upset when people are talking about their families, and I've got no real family as such to talk about. 

[sigh] I get a little bit sort of, I show a little bit of angst when a doctor says, 'Is there any diabetes or anything in your family?' and I get a little bit aggressive sometimes and I think, 'No, no, well of course not, I'm fucking adopted' you know, so there is no… there is no particular roots there, there's nothing that I can fall back on, nothing I can look at, I've got no past. That is a problem. Although I, you know, it's not, it's not, it's not a big problem in my life, it used to be.

One of his partners did not want to use condoms for anal sex because he thought he either already...

I have had sexual experiences where people have, knowing what I've got and didn't want to use any protection… There was one guy in particular who, who I went back to his place I think. I'd already told him that I was HIV positive and he shrugged his shoulders [sniffs]. 

And you know, the proceedings start and he said, 'Let's not worry about the protection.' And I said, 'Well, you know, you're putting yourself at risk.' So he shrugged his shoulders and said, 'Well, who the hell knows whether I've got it or not.' He said, 'I know I'm going to get it.' 

That's going back to what I originally said, you know, you, because of what happened to me you psyched yourself up in the realisation that because you're in that category you're going to get it anyway, you know. So it's inevitable yeah, and then, and then when you do get it, it's not so much of a shock. And I think there's a lot of gay men out there like that, and I think he was just one of those people.

Believes there is too much complacency that anti-HIV drugs will always work and death can be...

It's being drummed down their throats now that, by their peer groups, by, even by people like myself I suppose that have got different views on it, [pause] they're, they're not going to die. 

They seem to… there seems to be this culture of, 'Well if I get it, the drugs are going to be there and it's just like getting diabetes or something.' And I think a lot of medics actually think that that's the way, that's the way it is, like a chronic disease, you know, it's not just a chronic disease, it's a death sentence. There's no two ways about it. 

And the virus is still mutating itself; it's a very clever thing, you can't argue with this damn thing, once you've got it you've got it. But it keeps mutating and keeps changing and keeps, the doctors have difficulty in keeping up with the medication. So I would say to them, you know, 'Don't be that complacent.' But I think if you're going to teach them you've got to be brutally, brutally honest. I used to think when the Sun had the skull and crossbones on the front page how horrific and awful that was. The gay community said it was an affront to them. No it wasn't, it was the truth. I didn't think that at the time, but I do now.