Interview 17

Age at interview: 39

Age at diagnosis: 34

Brief Outline:

He took time to work out who to disclose to and to make treatment decisions (he currently takes Combivir and efavirenz). He initially suffered mental health side-effects (e.g. trouble sleeping, irratibility) but now has few problems with medication.

Background:

A gay man born in France who immigrated to the UK 19 years ago, and is in a long-term relationship. He was diagnosed following a period of poor health.

More about me...

Age at interview' 39

Age at diagnosis' 34

Sex' Male

Background' A 39 year old gay man born in France who immigrated to the UK 19 years ago, and is in a long-term relationship. He was diagnosed with HIV 5 years ago.

Outline' A 39 year old gay man born in France who immigrated to the UK 19 years ago, and is in a long-term relationship. He was diagnosed following a period of poor health. He feels he was probably infected through oral sex at a time when he was having multiple partners and was run down. His T cells were as low as 80 at one point, but have now increased to 500 with treatment. He took time (and used counselling) to work out who to disclose to, and what treatment decisions to make (he currently takes Combivir and efavirenz). He initially suffered mental health side-effects (e.g. trouble sleeping, irratibility) but now has few problems with the medication. While he was once 'burning the candle at both ends', he now sleeps and eats well. He has accessed talking therapy that has been valuable in helping him cope with significant life issues. Whereas once he felt his libido was in control of him, he now believes he has choice and his sex life is a more rewarding now.
 

Incorrect information is available on the Internet.

Because all sorts of material is available, especially on the internet. And you, you end up reading things and you' The problem is that you don't know who wrote them and, and where they came from, whether the person who wrote them was sane! And you know I remember coming across websites, I mean there was, there, I remember coming across this website by this man who, he was dedicating his entire life to campaigning against the use, any use of AZT. And he was a, you know he was a doctor and he was speaking with all the authority of a doctor. And these are things which can sort of really lead you astray, because AZT is part of my current combination. I mean God, you know it kept me alive.

He is grateful his doctor allowed him the time to find out for himself - and decide about - his...

And when I was diagnosed, the current treatment I am on, which is Combivir and efavirenz was' I think it was' either had only just been fully kind of released or it was still on large scale clinical trial. But up to then, I think, you know that, you, you, you kind of you were hearing all these horror stories about, about treatments failing, or treatments with horrendous side-effects. Not a very good success rate, even, even back, back, even in 2000. So you, know it is a complex, it is a difficult decision to make. 

And I am very, very grateful to my, to, to my doctor, because he let, he allow, he allowed me the time to make that decision. Even though when I was diagnosed my, my tests were pretty low and' and I have heard since of other instances where the doctor said well you must really start treatment now because' But he, it was a full, a full, and I think it was eight or nine months before I started. And I was determined to, first of all to establish whether I... whether I definitely needed to start treatment now. Because I felt that you know the, the treatment itself has probably some bad side-effects in the long term. And so I, if that's the case, I want to start as late as possible.

And the other thing that was going through my mind and which my doctor mentioned to me at the time. He said sometimes when you, when you have just been' when you have just contracted HIV you can go through a short phase where the HIV count is, is, is very high, and you can recover from it and keep going for quite a while without actually needing treatment. So I also wanted to establish that' that I wasn't, that wasn't the case. I also wanted to, to take time to understand the various treatments available, what they do, what good they do what bad they do. And talking about' about life instinct and about death wish and about all these things yeah, it's actually a very ambiguous position to be in because' You, you read all the, all these horror stories about, about the treatments and you know a few years before then, monotherapies had been used and with disastrous effect. And anyway so, so you carry' and it's very difficult to kind of decide where your life instinct lies.

Talking freely in counselling can lead to changes, such as taking control of decisions.

I suppose where' what came out is that, is that... I had to take charge of, you know of my health. I had to take charge of treatment decisions, but also I suppose I had to take charge in other aspects of my life like my, my relationship, my sex life and, and all that. So it was in that way that it that it helped. I think, somehow, I reached' it was, it was a fixed period of three months of therapy and somehow by the end of the three months I reached a point where I was ready to, to make a decision. I think a part' perhaps the way in which it helped is that, is that it was a structured process in a way, because I knew there were, I knew I had these three months. I was seeing the' the therapists once or twice a week and I can't remember now how, how often it was, but there was, it was, it was a structured process. And I, I, knew at the end of it my aim was to, was to make a decision about treatment. That's right, I had two aims. One aim was to make a decision about treatment and the other aim was to make a decision as to whether I needed to, to look into doing longer term therapy. And the' and at the end of the period the decision about treatment is that I would go on treatment, and the decision about the long-term therapy is that I didn't feel that it was essential for, at this stage.

Explains that you can take responsibility for treatment decisions using the advice of trusted...

You have to take responsibility. I leave the like the medical expertise' to my doctor in a way, I mean I, I kind of understand how it all works, a little bit but' Usually when I, when I'm, in, in doubt about anything or I, having to make a decision about something, I will ask my doctor's advice. And then I, I will make my own decision based on his advice. But, my God if you start obsessing about, about understand, understanding the minute detail of the medical things' Not only, not only is it extremely complex, but I think that, I found that in the initial months after being diagnosed is that if you' you know so you look things up on the internet and you, there is a danger that you fall' in a way you fall in the wrong hands.

He wanted to tell his parents about his HIV and he prepared them for the news.

It was a' a few weeks after I'd been diagnosed, I decided who I was going to tell. And my family was top of the list, and I basically set aside a weekend, I went to spend a weekend with my parents in Paris. I spent most of the weekend just socialising with them and doing things I' you know, sort of walking around Paris and' And once we had kind of re-established a bit of a relationship I sort of' I told them and' I wanted really, I wanted to' to' first of all I wanted to let, let them see that I was all right, before I told them. So that's why I didn't' I let sort of a couple of days go and then at the end of second day I, I did tell them. So, that went well.

Taking your time and developing a relationship with your doctor is important.

And it's a…. it's a relationship which, which happens over time. And I think that that is something actually that I would really recommend to, to someone in this position is that, is that, if you feel unsure, just give yourself some time. And, in kind of developing a relationship with your doctor. I mean I have a friend who was, who was diagnosed, well an acquaintance who was diagnosed recently. And he was kind of put on treatment two or three weeks later and it really wasn't, a helpful situation for him at all because he basically ended up having to come to terms with having being diagnosed HIV positive, having to absorb all the side effects, and the effect that Sustiva has on your mind. Cope with a bit of depression and it was all that together, where, not trusting his doctor, feeling his clinic is not sort of looking after him well. And it's just, you know, not, I think time is very important in those situations, and very much so.

Delaying telling people about your HIV diagnosis has benefits.

And I, I think, having that gap between the diagnosis and when I started telling people was very important because it also enabled me to' I think it's also important for the, for other people because it enables you to' to rationalise the whole sort of situation in your head enough so that when you do tell people' well you, first of all you have gathered enough information about it so that you can explain it to them. Because one of the things, when I told my parents is that, you, you realise that there's quite a lot, you, there's quite, there's quite a lot that you have to explain actually. Whereas if I'd told them the day after my diagnosis, I wouldn't have been able to explain anything in terms of' you know the implications on my health, on what was going on medically, or anything like that so' I think it's, I think it really is important to' to take great care to prepare yourself mentally.

At the time of his diagnosis, despite a strong bond there was too much else to think about to...

Well at the time (of HIV diagnosis) it (sex) was obviously, it was kind of out of, out of the question really. And we had anyway more or less given up sex at the time. But I mean since then, since then pretty much we, we, we, we have given up sex, com, completely. I think mostly because of the risk involved. Which in a way it was quite' it's quite ironic because we, we were in a way, our relationship, our relationship was maturing in something more honest, closer. And perhaps was getting to a stage where we probably would have been able to have a' a bit of a revival in this respect. But it's' it's' certainly in the first few months after my diagnosis there was too much going on to kind of think about that. Too much going' too much going on' Too much ri' too much risk to think about, too many things to adjust to' in our own, in our relationship, to kind of' add this additional layer of, of complication in a way. 

I still do have a sex life. It is' I suppose what you would describe as, sort of one night stands or anonymous encounters.