Interview 20

Age at interview: 38

Age at diagnosis: 35

Brief Outline:

He started treatment soon after diagnosis (efavirenz and Combavir) and his viral load quickly became undetectable and he had few side effects. He resists blaming his life problems on HIV. (Video and audio clips read by an actor.)

Background:

A gay man who works full-time in job he loves, and is in a long-term relationship. He was diagnosed in March 2002 when he presented feeling unwell.

More about me...

Age at interview' 38

Age at diagnosis' 35

Sex' Male

Background' A gay man who works full-time in job he loves, and is in a long-term relationship. He was diagnosed in March 2002 when he presented feeling unwell. 

Outline' A gay man who works full-time in job he loves, and is in a long-term relationship. He was diagnosed in March 2002 when he presented feeling unwell. He began medication soon after sero-conversion because his T cells went below 200 and his viral load was high. Although he did not give up work, he found he initially needed considerably more rest than usual when he first started treatment (efavirenz and Combavir). He 'listened' to his body and so rested and avoided certain foods when he started medication. His viral load quickly became undetectable and he had few side-effects (e.g. vivid dreams, tiredness). Although he did not receive the love he wanted as a child, he has created a life where he feels socially supported, confident and optimistic. Here, HIV does not play a central role. He consciously decided against what he terms the 'victim route' of blaming life problems on HIV.

(Video and audio clips read by an actor.)

He found out there was some flexibility in his medication regime. (Read by an actor.)

And because I have contact lenses. Taking them in and out, I just sort of time it more or less with that. Putting my contact lenses in… So it's a kind of a similar rhythm. I mean I… When I spoke to the, the guy that did the medication he said, 'You've got to take them every 12 hours, you know. It has to be 12 hours.'

So I said, 'Well, what happens… you know, times, is it 11? Or is it 10?' And he says, 'No, I have to say 12, because people will take liberties.' I said, 'So you mean it is 10? Is it…?' And he said, and he said… I mean he told me basically as long as you're within 2 or 3 hours each time, it doesn't matter. But he can't tell people that because then they'll go 5 or 6 hours.

He believes that resting and avoiding certain foods helped his medication to work better. (Read...

I mean some of my friends have said that they think that's because I didn't fight it at the beginning. So when I, when I took the drugs, I just, I just kind of accepted that for a few weeks I wasn't going to be going out a lot. I wasn't… I mean I, I don't want to make it sound as thought I was in bed all the hours. I wasn't… It wasn't that bad. 

But I wouldn't, I wouldn't be going out late. I wouldn't be going out drinking. I didn't want to drink. I think when you're… you have those drugs your body's kind of saying what it wants to have. Maybe the reason I didn't like to have milk or yoghurt's because my body just didn't want, didn't want anything too fatty. 

It didn't, did not want any alcohol. Just the thought of it was kind of make you feel sick. So it's probably those things your… I know your liver and your kidneys trying to deal with the drugs, it didn't want any… dairy products and alcohol being added into the mix. It'd just be too much. But after 3 weeks it started getting better... 

And I think, because of the quick response, it showed that I was, I was right not to fight it. Because other friends of mine have had medication, and thought, right, I'm not going to let these drugs take over my life. So they're taking them. And even though they're really tired and… they're going to… they insist on going out clubbing. They're going to go out. And it's taken them 6 months or so to come down to undetectable. Really long. Like really slow. And not feeling good. 

The HIV clinic nurses went out of their way to help him feel at ease and cared for. (Read by an...

And they were real- they, they made you feel… ma- made me feel  very welcome. There's some really nice nurses there. And there's one in particular, I can't remember her name, one of the older nurses there. A Spanish woman. Well she's almost like a kind of a mother. 

And then she… you know, she gave me her mobile telephone number. You know, 'Even out of hours, if there's anything wrong just give us a call.' Other numbers. Even any questions. It was very… You know, it made you feel like nothing you asked was stupid. Noth- no question you had, no, no feeling you had was stupid. It was… They couldn't do enough to make you feel at ease. Well, and they still do. And they're, they're fantastic there. I've no… I can't say anything… I don't want to say anything bad because I have nothing bad to say.

He loves his work but thinks that some people with a HIV diagnosis opt out of work or become...

And then some of friends, when they had the HIV diagnosis… they were able to… really abdicate responsibility in some way, and just push it all over onto that. And some of them went, went down the… the benefit route and kind of opted out. 

So they were able to say, 'I'm not doing my job anymore, I'm not doing that house. I'm going to go and get some social housing, get the car, get everything else, just kind of opt out of that.' But no, that, that's not something personally I would want to do. I don't see, I don't see the taxes as being a savings plan [laughs]. It's be quite nice if they were, but no. 

But there's sort of some who kind of opted out altogether. Which I think is… nowadays is harder to do. Because of the changes. Other ones went into this kind of anger… It's a bit like a grieving, I think. I've seen… Well, I've seen my friends, and when I've had… family die, it's that kind of… you know, the, the disbelief, the acceptance, the anger, all these different phases. 

And that… I think it's very similar. I think any shock is probably the same. So there's lots of friends who have come out of it. But some friends seem to be stuck in it, and haven't been able to move on from, from particular, a particular stage they've got in to. But because I've… I'm really… I love my work. I'm really happy in my work. It goes really well. I love doing it. 

He can't cope with the idea that his partner might be upset by his HIV. (Read by an actor.)

I have found and I still find the most difficult thing… The mo- thing that I, I really find most difficult to deal with is not how I feel, it's how the other person would feel. So I'm having a long term relationship at the moment for… oh, it's been in fact 2 or 3 years. And that's very strong. 

But the, the thing I find the worst is the… kind of the sadness when they think about it. Or when I think about it. There's that kind of… Even though my doctor has told me that… He says, 'You're not going to die of this anymore. You know, you're going to die of a heart attack or be run over in the street.' It's that kind of… It's that… It is a, it is a rather… When I think about it, I find it, I find it rather sad. 

And I've found that issue I do dodge a little. The sadness of the HIV… I don't actually like seeing things on TV about HIV when I'm with my partner. It just makes me feel like oh my God, how can I… why did I… how did I become HIV? And how does it affect, you know, the person that I'm with? It's upsetting them. Because, you know, they're upset that I've got it.

He has found a way to relate to the virus that makes sense of his experience. (Read by an actor.)

Some people I know, HIV is part of their life and it almost becomes… It becomes part of your identity in a way. Be it the people that they hang out with, the only sexual partners they'll have. The, you know, the tattoos on their body. It's all… It's very much they are, they are in that. 

But they, they're HIV, and they're almost like a professional HIV person. Like it becomes a key part of their life and their identity… And I just… Like I said, with the, with the drugs, I forget I'm taking them. I just like take them automatically. The way I put my lenses in or brush my teeth. It's becomes part of my life and it just… I don't think about it. 

I thought it would have more impact on my life when I was diagnosed. You know, I was thinking, oh, you know, it's going to be changes and this and that. And then I found that it, it wasn't. I didn't, I didn't need to… You know… All my friends know and stuff, but it just isn't an issue. Especially now since my health has stabilised.