Interview 38

Age at interview: 46

Age at diagnosis: 27

Brief Outline:

Although he has developed a lot of resistance to anti-HIV drugs, he is currently doing well on T20, TMC114 (as part of a trial), FTC, tenofovir and abacavir, and has an undetectable viral load.

Background:

A 46 year old gay man who lives in a small village in the midlands. He was diagnosed in the early days of the epidemic.

More about me...

Age at interview' 46

Age at diagnosis' 27

Sex' Male

Background' A 46 year old gay man who lives in a small village in the midlands. He was diagnosed in the early days of the epidemic.

Outline' A 46 year old gay man who lives in a small village in the midlands. He was diagnosed in the early days of the epidemic. He works voluntarily in the HIV sector. Although he has developed a lot of resistance to the antiviral medications, he is currently doing well on T20, TMC114 (as part of a trial), FTC, tenofovir and abacavir, and has an undetectable viral load. He has had to deal with a lot of death in his life, including family, friends and partners. Counselling has been very helpful to him. He is highly informed about medications and health care.
 

It can be hard to maintain friendships when people expect you to die early.

They might perceive that because you're HIV positive there is no time to' what's the point of investing any effort into getting to know you. Because you're going to die, you know so you still have that to deal with. I remember [name]... that's one thing [name] said to me after [name] died, that she has a great deal of difficulty in dealing with death. And she said, 'You know, I've, I've, I have problems.' She was honest about it, 'In, in that if I don't want to get too close to you, because I can't deal with you dying.' And I must admit, in my last email I sent her I said, 'Went for an MOT today, doc says I've got 30 years... God.' Question mark you know. To say that I'm still around and' That was in '85 so 90, ten years ago, ten years ago, so I'm still here.

Describes how difficult experiences may be buried in the mind and how talking helps.

But as human beings we do things in our lives and we have interactions, some good, some bad, things happen to us and we don't deal with them, right. We store them in little boxes and we bury them in our subconscious' Whether that, that could be break up of a relationship, as complex as that can be, or it can be something that you perceive as being very embarrassing. Which might not be embarrassing to anyone else, but it's embarrassing to you and, and you bury these and they're like skeletons. And you need to exorcise them. You need to expel them' 

And it's the talking about it and how it made you feel and why you went down a particular route, using your logic. Whether it was correct or not is really irrelevant, it does help in talking to an individual' a counsellor. They will not have the answers. You have the answers. And it is getting at those answers.

Believes that basic sex education in schools is failing many young people.

And we're not educating people. I mean that's the' that's the frightening thing is that schools, although they've got to cover HIV, they're not doing it in sex education, they're doing it in biology. And the point is not getting across. And we know the point's not getting across because we have something like 100,000 cases of Chlamydia every year. Which is a very easily transmittable infection, we have, teenage pregnancies are running out of control' I think we had it right partly towards the late 80s. We frightened a hell of a lot of people, with the government's campaign, but it kept it in people's consciousness that there is a disease out there and you can get' you can get it from unprotected sex. 

There's an interesting guy I spoke to who basically said, 'Well, if the girl wants me to use a condom I know she was safe, right. But if she didn't want me to use a condom, then I'd put one on [laughter].' I mean using that weird logic, I was saying, 'What about pregnancy? Have you ever thought about that?' 'Well I withdraw,' and I was saying, 'Well you can still make them pregnant.' So basic information like that is not getting through' And you are not taught about gay sex in school. 

Says that we need to be clearer in educating people about which body fluids can transmit HIV.

I think the press had a lot to do with hyping it up and people they have this fixation with bodily fluids. Oh my God bodily fluids are infectious. So it's only when you actually sit down and say, as I do with social workers. 'What bodily fluids are infectious?' 'Are we talking urine are we talking sweat, are we talking tears are we talking blister fluid? What bodily fluids are we talking about?' And, and basically it just comes down to three which are, potentially could cause an infection which would be blood, vaginal secretion or seminal fluid. The' us human beings that are not in the medical field come into contact with, you'll also find it in cerebral fluid and lymphatic fluid and things, but, trying to explain to people that it's not all bodily fluids' that's the wrong word to use but a lot of people say bodily fluids. And basically what the, it should be more specific yeah.

People need to live life in the present, but responsibly.

(It's about) enjoying the moment now as opposed to thinking well, if I work hard until I retire and then I'm going to have some fun, right. It's a case of do the things you want to do now. Because you don't know what's going to befall you whether it is another disease, being HIV positive is no protection from acquiring another disease. Being HIV positive is no protection from being, being involved in a car crash or being in a fire or whatever. You don't know how long you've got so, you've got to say' live life for the moment (but not) to hell with the future, because you've still got to plan for the future. As we did in the early days saying, max your credit cards and enjoy yourself because when you're dead you've got nothing and they can't take it away from you. I remember one consultant was saying to one particular guy, you've got six months, and so he had a fantastic time, thoroughly enjoyed himself, maxed his credit cards, and of course two and a half years later, he's still alive. With a big debt that had to be dealt with. 

Not everyone has access to effective medication, and the consequences of not taking medication can be fatal.

When I talk to people newly diagnosed, or people starting medication, they talk to me about' 'Oh this tablet's too big', or 'This is the wrong colour or it' I can't take that.' And I'm thinking Jesus I know people who'd snatch your hand off for it, and you're whingeing about taking a tablet. Do you know what the consequences are of not taking those tablets? I know what the consequences are of not taking those tablets. There's another guy tha, tha, that, that I gave a positive result to, two and a half years ago, he died the beginning of this year, with PCP. He didn't stay in contact with me much, but I got a message to say that he'd been admitted. And I went to see him and I was talking to him and I was just saying, 'For God's sake, why didn't you attend your appointments?' and, 'You know this can, this is all avoidable.' And he said, 'Well I just wanted to see how sick I could get.'
 

Gives advice on caring for the self and balancing HIV with the rest of your life.

HIV is a lot like the NHS. Nothing happens fast. Your future's in your hands, if you listen to the doc' take his advice, and do everything in moderation, then there's no reason why you will not die of something else. The future's not guaranteed to you, so when you make decisions in your life, bear that in mind. That something else could kill you. HIV's not a shield. Not, everything, not every illness that you will have is related to HIV. So don't use HIV as a coat peg. If you care more about yourself than what other people think of you, you'll cope quite nicely, with being positive.

Some of his neighbours in a small English village are still ignorant about HIV.

Well I live, I live in a, I live in a small village and with small village mentality. Even though there is a fair few gay people in the village, predominantly lesbians. I've lived there for 20 years it's a' I know all my neighbours they know my sexuality, it's not a problem, they know the work I do. But [sighs] I don't know how some of the less well informed would react if they found out that somebody was HIV in the village. I'm sure I'm not the only one, but I'm not aware of any others that actually live in the village. And although it's now in the commuter belt of [city] and house prices have rocketed, so we've got a lot of new people coming into the village, the true village people are still, as I would say, require enlightenment about HIV. And they'll have the old stereotypes and' and fears... just as in the general population. You know that HIV is a highly infectious disease, you can get it from sharing cups and things, we still have all that sort of crap even though we're 20 years on, and we know that's not the way it transmits.

Talks about how people need to live life in the present, but responsibly.

(It's about) enjoying the moment now as opposed to thinking well, if I work hard until I retire and then I'm going to have some fun, right. It's a case of do the things you want to do now. Because you don't know what's going to befall you whether it is another disease, being HIV positive is no protection from acquiring another disease. 

Being HIV positive is no protection from being, being involved in a car crash or being in a fire or whatever. You don't know how long you've got so, you've got to say' live life for the moment (but not) to hell with the future, because you've still got to plan for the future. As we did in the early days saying, max your credit cards and enjoy yourself because when you're dead you've got nothing and they can't take it away from you. I remember one consultant was saying to one particular guy, you've got six months, and so he had a fantastic time, thoroughly enjoyed himself, maxed his credit cards, and of course two and a half years later, he's still alive. With a big debt that had to be dealt with.