Interview 25

Age at interview: 63

Age at diagnosis: 48

Brief Outline: He currently takes didanosine, ritonavir, lamivudine and saquinavir for HIV. He has suffered from non-painful peripheral neuropathy and some lipodystrophy. With treatment, he now looks forward to a long retirement.

Background: A retired GP living with his partner of 9 years in London. He was diagnosed in 1990 after unprotected sex at a time when he assumed he was HIV positive.

More about me...

Age at interview' 63

Age at diagnosis' 48

Sex' Male

Background' A 63 year old retired GP living with his male partner of 9 years in London. Diagnosed in 1990 after unprotected sex when he mistakenly assumed he was HIV positive.

Outline' A 63 year old, retired GP living with his male partner of 9 years in London. He was diagnosed in 1990 after unprotected sex at a time when he assumed he was HIV positive, although he was actually negative' His previous partner had died from Aids. He currently takes didanosine, ritonavir, lamivudine and saquinavir for HIV. As a hard working health professional, it was difficult for him to consider his own health needs, become a patient, and retire when he needed to. Nevertheless, with treatment, he now looks forward to a long and rewarding retirement. He is active creatively, and in making and keeping social networks. Happy in retirement, he believes it is important to give up the esteem of a valued work identity and gain personal esteem from himself. He has suffered from non-painful peripheral neuropathy and some lipodystrophy. He has used Testogel to treat low testosterone levels, low libido and low energy.

A simple ceremony helped him to grieve for his partner who had died.

And he (his partner) died not very long afterwards. And depression is funny but' It was a year later when, it was my fiftieth birthday. And oh it was absolutely wonderful and it started, the 50th year was probably the best in my life up to then. 51st year. And I realised that I had been depressed for a year.

In retrospect I realised that, it had been a very low year. And I was going to Venice with a few friends for my 50th birthday. And we took his ashes, and took a gondola out into the lagoon and left them. And I'd arranged, I had made a little speech and I thought it would all be a bit sombre. So I'd arranged with one of my friends in the gondola and said... when I said certain words, I said I want you to let off the cork from the champagne bottle. And it broke the ice and it was lovely, because it was a year later. And but it was a perfect little ceremony, he'd shown, taken me to Venice the first time I went, and we both loved it. And so his, his ashes are there in the lagoon.

He finds his lipodystrophy hard to accept.

And I don't really have to modify my diet I think. It is uncomfortable sitting on hard seats for a long time because I've lost all my natural padding. My partner says that I had a nice bottom once but, but there you are... You can't have everything.

And how do you feel about that?

Well. I suppose again it's an unpleasant thing that I block. But I don't, I would like to… I'd like to look great, to be wonderful. Stunning. Handsome, I've never been, I've never felt that I was, though looking back at photographs of 30 years ago I, I would have fancied me! But, there we are, at the time you don't know.

Although his routines are usually stable he has to plan his medication ahead if he travels.

It's a bit of pain, the medication. It's tough because I' you do have to be obsessional about taking it, absolutely. Well probably forever, and on time. And there are a lot of pills, but I'm lucky that I have a fairly predictable domestic, not very wild life. People who are out all night or all weekend dancing I can imagine it would be very difficult. I mean when I go on holidays it's, it's tricky. I have to think hard in advance, you have to remember to count out all the tablets before going, and take enough plus some for cancelled flight say. Work out the affects of time changes which' Which as I, as I get older I find more and more muddling. In fact sometimes it's better just to make a switch and start the new regime when you get there, even if it means a longer gap for one, for one occasion I think. But I do try and compromise a bit and elide the two time zones.

It helps to talk about HIV, but it can sometimes be difficult to anticipate other people's reactions.

I' it helps me to be able to talk about it, but some people do find it difficult to cope with I think. I haven't had anybody' no hysterical reactions, nobody's run away, or not wanted to know me any more, ever. But some people have been more, more distressed than I might have anticipated I think. Of course in those days, people did expect you to die, and indeed most, almost, most of our friends did die, it was appalling carnage, I was very lucky. 
 

Although not religious, he found the ceremony at his partner's funeral an enormous help.

But it's an enormous help in saying goodbye I think. I mean when [name] the Rector of [hospital], of [church] at the, towards the end of the service says, go [name of partner] go join the angels and so on. Well you don't have to believe in the angels, but actually physically saying go [name of partner] go, is, is a very helpful way of knowing that, that he has gone. And to say goodbye I think, especially with so many people there. So although I'm not religious, I do think these religious ceremonies have grown up to, to fulfil very necessary human needs.

Explains why he will put up with side effects and stick with his current medication.

And my CD4 count has been creeping up year by year and my… my doctor said last time, when I'd said this is the highest in my life. The time before last that is, and 380 I think, he said, 'Well don't, it might go down.' He said, 'I like to warn people because these are, things are variable.' So when it was done the next time it was 410! And viral load undetectable, so I'm, I'm very cheered by all that. But I'm… I do have some problems with treatment, there are side effects which are not in considerable, but I'm fearful of changing because I just don't want to give up… if I'm going to live another 20 or 30 years like a lot of my family, then I don't want to have given up things that still work if I might need all the options in the future.

He is enjoying his retirement and has enrolled on a full time pottery course.

I mean I love retire, retirement. I've got lots of interests, in the arts and the garden in the house and friends too. I do a lot of cooking and entertaining and travel to visit friends. We have friends come to stay with us here in London and we go to visit friends in lovely places in the world. 

And I'm going to pottery classes and, and I'm really enjoying that, I've always loved and collected ceramics and, and I thought well, I could go to an evening class and the tutor when I went... said well if you're retired, why don't you come to a structured course that lasts all day. And I thought, that's a bit brave but yes, and I've been doing it now for two years.

Oh I want to make something beautiful. A thing, I want, I want, I'd love to... do things that I'm proud of, I haven't yet. I'm being good and doing as I'm told and following the course and so on, which isn't always things I think are, even potentially beautiful. But yes I, one day, I shall get my own wings and, that would please me enormously to do something I was proud of. I've done a few things I like, but nothing I'm proud of yet.

He assumed he had got HIV from his long-term partner and so had unprotected sex with a HIV positive man.

I said about the way I got HIV, and we're going back over 15 years now, and to a different world. I had a friend who'd been looking after his partner in the [name of Charity] for a long, long time as he died. And we were, young, much younger. I found him very attractive. I went to the funeral finally of his partner, and we had a fair bit to drink at the party afterwards, then the two of us went out for dinner nearby here. And we had more to drink and sort of came home between the two of us on three legs here and' and it was a sort of' And remember of course I assumed' I knew, I assumed that I had HIV at the time. And I knew he had, and we were sort of comforting each other really, it was a sort of' Very affectionate, very intimate session of comforting after the funeral of his partner. And actually we had a lovely night! But I was certainly exposed to infection and' and in' of course in proper time afterwards I had my seroconversion illness. I never told him that I'd got HIV, he died not all that long afterwards. I felt very much that it was certainly nothing that I could blame him for. That it was a joint misadventure and it had actually been lovely, being together that night. The HIV was a most unfortunate consequence.
 

His thoughts on disclosure of HIV status in casual sex are shifting.

First of all I think you have to have safe sex, secondly I think it's not one person's responsibility. And I would never, I mean if anybody asked me I'd say immediately, yes. So people are free to ask and everybody should have safe sex if they're concerned, either... Getting it or giving it. Even so it worries me a bit and I'm beginning to move towards the idea that you should at least provide, I should at least provide people with the opportunity to find out.

I'm just concerned about people being appalled if they find out subsequently. And I don't feel that if I've been involved sexually with somebody then I can be' that I'm the right person to be a counsellor, to explain to them what the risks are and so on. I mean they'll see me as... special pleading and all of that sort of thing, so I'd rather they did that first really. I mean I can give other people help and advice about other, their other partners still. I mean I'm always happy to talk to people about HIV and it's problems and complications. But I don't think I can tell, easily talk to somebody I'm intimately involved with about it. Because I'm not the right person to do it in that situation.