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HIV

People's stories

Aged 36-40

Interview 03

Interview 03

Age at Interview: 37
Sex: Male
Age at Diagnosis: 24
Background: Has only recently returned to full time work. He was diagnosed with HIV as a university student, and in 1997 he very nearly died from HIV-related illnesses.

Brief outline:Has slowly built up his strength since his illness, becoming highly expert in HIV. He did extensive self-development work on himself. He has 870 CD4 cells and currently takes nevirapine, abacavir, and lamivudine with minimal side effects.

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To a certain extent he dealt with HIV by becoming informed.
Print My way of dealing with it was to try and inform myself. Once I got a diagnosis I spoke to my friends about it, and told my friends, the people I was living with who was supportive. I told another friend who was incredibly practical and said okay let's go and find out what we can about this, let's go and research and meet people and talk to people about this and… which is exactly my way of dealing with things as well. And so that is what we did, we went to a drop-in centre, and chatted about everything and took away a whole load of information and leaflets and brochures and things. And then I kind of having… I guess having informed myself to a level where I knew all of the fundamentals about it, I decided that I really didn't want to think about HIV anymore. And there was nothing I could do, and so until there was something I could do I should just carry on with my life and get on with it and do what I needed to do.

Talks about what it is like to get your life back on the new HIV treatments after facing death.
Print What threw me almost as much as having the choice taken away. When I was in hospital, was the sudden realisation that actually, I am going to have to live a life again, and I don't know what I am going to do with it. And that was terrifying… Certainly for the 6 months before I did anything, when I was just recovering from illness, I was thinking, what am I going to do here, you know what what can I do with my life? Am I well enough to… To do anything. Should I go to work? All of those fears about if I start to work will it make me ill again like it did before. I don't know it was really scary. It's one thing to slowly accept that actually my life is being taken away from me, and I have no control over it really, all I can do is choose how I feel about it. But then to have that all given back to you… completely let go of it in the end. And then to have this happen for you to be told, actually now you are going to live, and now you have got to decide what you are going to do with your life. That is one the only way I can think of it. I have been doing my best not to swear, but it is one hell of a mind fuck!

He was used to collaborating in treatment decisions with his HIV consultant and felt his oncologist did not treat him as an equal.
Print And then my oncologist came in. Now the oncologists at that time, unlike HIV doctors, were still on rotation. And so I'd had this particular one for six months and he was very much an old school doctor where I prescribe - you take. He didn't really work very well with me on the level that I had been used to. And he said well you know the one that you have had hasn't worked and we are going to switch you now to this one other option. I cannot think what it was called, but it was something that had been used in the States. I think it had been used for ovarian cancer, it is highly aggressive and he said you know, he said we think that it may work for KS, there have been some trials in the States and it does seem to be working for KS. Now it is much more aggressive than the other ones you have, he said. So you know it will have quite a negative impact on your white blood cells, and you will lose your hair, and this, and he went through this list of side-effects… these are the possible things that could happen. And he's standing there telling me this at my bedside and my clinic doctor is there standing next to him making notes. And he finishes up and [name of HIV consultant] my doctor turns to him and says what, and you really think he is going to take that? And ugh [name] the oncologist says 'Well. Yes' He looks at me and I look back and look at him and I just laugh and [name of HIV consultant] laughs back, and I said, 'No I won't take that.' He said that you have to because it's your only choice. I said, 'No, no, no it's not the only choice.' What I will take is the medication you were giving me before. But I will take it again at three weekly intervals, not four weekly. He said that doesn't make any difference, he said, me moving it a week wouldn't have made a difference. I said you moving it a week made the difference, I tell you. I know my body. I know how I felt after every three weeks when I had the chemotherapy, the soothing effect of that I felt.

He stopped taking his anti-HIV drugs and his T cells quickly fell to the low level they were before treatment.
Print My CD4 count has been in the five hundreds for the last few years. And I had once it went up to 680 and then I went on a drugs holiday because I was going to be going away, and I had a feeling my body said 'No you need a break. You have been on drugs for at that point I think it was about 4 years, you need a little rest', and so I went on a drugs holiday. I went through a whole seroconversion illness and my viral load went up to one point something like a million within a two-week period. My CD4 count dropped from 600 and something down to 80 and I was in, I was ill. And so I went straight back on to the medication, it didn't work for me. That was an awareness for me. It was just at the time when they were starting to look into drug holidays and I spoke to my doctor and as far as he was concerned there was nothing to show that it could be a problem. So I did it and this happened, and it was the first time that… that reaction had ever been seen. And then of course what happened over the next year's was they started to realise that if you have a drug holiday, you need to, you need to have started your combination therapy at a time when your CD4 count was high enough. Because what happens is when the HIV comes back, your CD4 count will often drop back to the level it you started at. So of course we didn't know about that at that point, it wasn't… the research hadn't been found out about. So since then it has been a matter of slowly building back up from that 80, and it was a long slog.

Living with a life threatening illness helped him to focus 'on the present' and what he needed to have a better quality of life.
Print And then when I got the (Aids) diagnosis I thought okay I have spent these last three years learning how to live with something that is life threatening. And how to have a good life and I had, I had a fantastic, you know they had been the best three years of my life ironically. And why was that? Because I lived I was so present in my life. What do you mean by present? Well when I was at college, and I was drinking and clubbing and having fantastic fun, the focus of my attention was going out getting drunk and dancing all night. That was where my attention was… Secondary to that was trying to get a bit of study done so that I could finish my degree. No concept about what I was going to do with that, or why I was really doing it, because it was just what was done. College was what you did after you finished school for me. Whereas once I'd stopped drinking, and I'd made a few decisions when I've stopped drinking that all of the money I used to spend on my cigarettes and on my drink would be put towards things that I wanted for myself, whether it was holidays, theatre, opera, cinema, galleries anything that inspired me and made me feel good and enriched my life. That was what all of that money was going to do for me now. And that is how I lived my life, on a daily basis that you know everything was for my advancement, everything was for my enrichment, that really you know… if I was going to have a good quality of life for what ever time I had, it had to be done there and then. And you know I can recommend it as the best way to live, with responsibility, not thinking that this could be the last day I live, but to think of well if it was, how would I want today to be for me. I would want to be productive, I would want it to be enriching, I would want it to be happy. So what is the point in living through a crappy day that gives you nothing, that only gives nothing to anybody. There is no point in that… it is a waste.

Compares negotiating with doctors in the earlier days of HIV to what it is like for him now.
Print (He was) an older doctor and was very much 'Whow! No this medication will be good for you it is the only thing we have.' And I said, 'Yes, it is the only thing you have but it is not doing people any good.' 'Agh well it could prolong your life this much.' I said 'Well prolong at what cost? I don't want what the people I have seen taking it have. I am OK at this point.' And this was say in the early Nineties still before I became ill, and so I refused it and then the doctor changed. But at that point you had a new doctor every six months practically. Because I was at a teaching hospital and as most of the hospital's were with the HIV units attached… they were teaching hospitals and so the doctors would be on rotation, they would do six months in paediatrics, six months within sexual health, six months here, six months there, sometimes maybe a year. But generally you did not see a doctor on a regular basis, so you couldn't develop any kind of relationship really. But what happened was then as younger doctors came through they seemed to be a little bit more respectful of my choices. And really after a couple of years a particular clinic I went to started to ensure that the doctors that they had were there and that they stayed there. That those people who chose sexual health and HIV in particular, that there was their choice for their career.

Talks about how he reacted to the news of his Aids diagnosis given his belief in a higher power and the work he had done on himself.
Print And so that was the tough one when he (the doctor) said, 'You know it is KS.' So I said, 'This means then that I guess I have got a new diagnosis.' And I couldn't even bring myself to say the word. And I asked him to give me the diagnosis and he said, 'Yes, you know you now officially have Aids.' And that was the worst. The HIV diagnosis was a shock because I was not expecting it. But this was worse because I had spent the last three to four years fighting not to be in that position. And determined that HIV was not going to equal Aids. In my case. I was going to beat this, I was going to be a long-term survivor, I was going to be healthy, so getting that diagnosis for me was, was such a horrible feeling of failure. And I was really angry, and I felt like I was being punished. And you know I kind of had this whole thing with… I use the word of God very loosely, because I don't have any kind of religious background. But I developed a sense of some kind of a power for myself, that I felt I had something to trust, something that was bigger than me. And I have this kind of thought that you know that this was not right. I have done all of the right things, why the hell should I have to put up with this now. When I have looked at my diet, I've stopped drinking, I have stopped smoking. I am doing this, I am working on… I have been a good person and now I have got this and it is just not fair. I was furious absolutely furious. It sounds like a grief reaction? Yeah and because… you know… there was… I spoke about that kind of the borderline between denial and healthy scepticism and I you know, I was closer to the denial side than the healthy scepticism obviously.

Says there is no need to rubbish either the medical or alternative approaches to health.
Print It was interesting because all through the Nineties there was the theory that you know Western medicine actually is bad it is just poisoning… AZT is terrible. And they were right about AZT, but those people had very much… had that, it was that crossover between scepticism and denial where in saying that this is bad, they have to then, they felt the need then to rubbish everything that the medical establishment was doing. I didn't believe that. I couldn't believe that. I didn't want to believe that. I needed to be able to trust in my doctor and the fact that I was always treated with respect and given my opinions and allowed to do what I needed to do for myself. It was proof to me that actually the doctor was a good person. When then I actually took a combination therapy and it was working, I thought okay well there you go that is fine, but that doesn't mean that I have to then rubbish any of the alternative therapies, why not both of them. And the herbalist friend I had was very much about you know these are complementary therapies, these can work in their own right, but I don't want you to come off any medication, that medication is getting rid of your HIV. This won't. But what it will do is boost your immune system. He was giving it to people who weren't on combination therapy and he was giving it to people who were. Now with the studies that he did at the time seemed to show that it worked for everybody and it did make a big difference. So I stuck with the combination therapy and I took the complementary therapies as well, and I started to get better.

Doing aerobic exercise helped to reduce his cholesterol and minimise lipodystrophy.
Print I was already starting to lose weight in my face… I never had any fatty deposits anywhere else, but I accredited that to the exercise I was doing… But is only going to do you good anyway, it is interesting last year my lipid levels had been quite high because of the combination therapies, the fat levels. And my levels have been around 5.8, the cholesterol levels which is borderline high. Over six and it is medication time to try and get those down. Now the one area I don't like in terms of exercise is cardiovascular exercise, which is very good in terms of keeping your heart healthy keeping your blood at good levels in terms of the cholesterol, it tends to cleanse through a little bit more and so on. But it is the one thing I don't like doing. I find it very boring, but last year having got to the point of qualified to personal trainer, I started to recognise actually it is one of the best things that you need to do for yourself. So last year finally I decided to get myself to a programme of regular exercise on an aerobic capacity. So I trained three times a week and over the period of from April to September, I did three times a week, and I worked out and I trained and I jogged, I rode I did all of the things that I could. My lipid levels had always been about 5.8 up until then, when I have my results in September it was 3.2. Which is fantastic, and it proved to me that actually it was the only thing I changed last year. So for me that was proof enough that it had worked.

He was referred to a physical exercise program involving Pilates that helped him regain strength after illness.
Print I got another referral in 1997 for a programme called the Positive Health Scheme and it was a clinical referral programme for people with HIV. And so I went along there. Now at that point I had obviously I had KS for several years in my lungs, walking was just a real chore, it was very difficult to walk at any length. I was breathless very easily because my lung capacity was massively reduced and I was very weak after the pneumonia and all of the rest of the things. And it was you know… I was in a bad way. So I went and did this programme and they started to try and get me to exercise a little bit, and they got me to do Pilates which was great for me at the time because it was on the floor I didn't need to be standing and running around or doing anything. It was very mind-body orientated as well, that of the great thing for me. Given the fact that I am a great thinker a lot of the time, I spend a lot of time analysing and thinking over things... the fact that actually of having an exercise which was about focusing your attention on the areas that you were working on and really working with the mind and the body I really liked, and it is what got me back on my feet physically… and for the first time I was inspired by exercise! I was one of those kids that avoided sports at all costs. Pilates really worked for me it was one of those things, no this makes sense to me. I can think my way through this exercise.

Believes that getting support from other people with HIV is the best way to help yourself.
Print For me the most important thing is peer support. That is why I am doing this now, because I believe that other people's experiences are the key to finding out what you need to do for yourself. I've gone to therapy, I have done personal development seminars, but the thing that really help me most was being in different kinds of support groups where people who had been through the same experiences talked about their experiences. And talked about ways that they had found to get out through the other side and feel OK about themselves. So peer support was the main thing for me.

Work stress coincided with his illnesses and he decided to retrain for work that interested him.
Print And so I started to… think Okay. I am getting better, I'm getting physically active what do I want to do now? I'd left the job I'd been in for the previous five years which was in the film industry, which was very stressful and the year before I had been hospitalised for three times and after the third time I said okay that is enough. I am quitting I can't work any more this is too much. The three hospitalisations also coincided with very busy periods at work… we would have a very big rush on with a very big film. I would get everything done I would do all of my job I would it perfectly and then the week after the film was released Bang I would be in hospital. And that happened three times and the third time I said no this is silly, this is no good… and at that point it was like well you have got to stop here anyway. So I was out of work, I was on full benefits I did not know what to do with myself. And so I sat down with friends and said well what can I do? What is going to be good for me? What do I want to do? And I literally sat down with Floodlight, the listings for all of the adult education things, all the courses are on it, and I went from A-Z and I crossed out all of the ones that did not interest me and then I took out… I had made a list of every single subject that was in there that appealed to me on any kind of level, and I whittled that down to eventually about 20 subjects. And then thought about okay what when I see it, what just makes me smile just the thought of doing that?

He had a difficult relationship with his parents while growing up, but it has improved over the years.
Print To be fair they'd really been fantastic, they had always been there for me. I just hadn't always recognised it that they were there for me. I always felt in my head that actually there what judgements about me being gay, there were judgements may be about me being HIV positive, which actually there weren't, but my mind told me that there were. And that was my negativity not theirs and that was the difficulty. What they weren't particularly good at was expressing themselves, and so because they didn't express themselves, I always thought that they were thinking the worst, whereas they weren't. They just weren't very good at expressing themselves. Which is exactly the way I was of course. So you know parents who don't express themselves very well, it is kind of natural that the son is not going to end up growing up being very good at it. And what happened of course as I started to develop the where with all to explain how I felt and talk about what was going on with me, and talk about those things with them, is that they have actually changed with me, and they're very different now than they used to be. In terms of the things that they will talk about… in terms of being physically affectionate.

As a self confessed 'control freak', there was something liberating in facing death.
Print On the other hand, it [facing death] was in some ways liberating again because actually well there's nothing I can do now. There was nothing. I had already taken the medication I had said okay now I'm going to do this because I think it is the right time and it did and I suddenly felt better but then this happened and it was worse. It's like well actually I have no options here now, it is not like I have not taken the medication and I could say do you know, I know its late, this is really last minute to say this, but now I am taking the medication. Too late, you are already taking it.

Although his HIV negative partners said they had no problems with HIV, HIV did create problems.
Print And they all had issues around it and you know they all said no, no it is fine it is not a problem you're HIV positive. And over a period of time with one of them it was the urge to then have unsafe sex… He would push towards that… Until it would freak him out completely. And the other ones, with the other one it was a case of them just drawing away from having safe anal sex, and then suddenly thinking I don't know if I am comfortable with oral sex now, over a period. And is like why what is different now? I am healthy things are great. And with the other one the fact that it was new to him, and it was just like, 'Oh no, hold on, I have just done this twice', so I ended that one quite quickly. And so for that that one, the HIV was just an added thing. I mean the fact that he knew… because he'd only just come out, and he just knew nothing about HIV, and so I was educating him as well, and I thought do I really need to be doing this at this point in my life? And so we broke up.

Living with a life threatening illness helped him to focus 'on the present' and what he needed to have a better quality of life.
Print And then when I got the (Aids) diagnosis I thought okay I have spent these last three years learning how to live with something that is life threatening. And how to have a good life and I had, I had a fantastic, you know they had been the best three years of my life ironically. And why was that. Because I lived I was so present in my life. What do you mean by present. Well when I was at college, and I was drinking and clubbing and having fantastic fun, the focus of my attention was going out getting drunk and dancing all night. That was where my attention was… Secondary to that was trying to get a bit of study done so that I could finish my degree. No concept about what I was going to do with that, or why I was really doing it, because it was just what was done. College was what you did after you finished school for me. Whereas once I'd stopped drinking, and I'd made a few decisions when I've stopped drinking that all of the money I used to spend on my cigarettes and on my drink would be put towards things that I wanted for myself, whether it was holidays, theatre, opera, cinema, galleries anything that inspired me and made me feel good and enriched my life. That was what all of that money was going to do for me now. And that is how I lived my life, on a daily basis that you know everything was for my advancement, everything was for my enrichment, that really you know… if I was going to have a good quality of life for what ever time I had, it had to be done there and then. And you know I can recommend it as the best way to live, with responsibility, not thinking that this could be the last day I live, but to think of well if it was, how would I want today to be for me. I would want to be productive, I would want it to be enriching, I would want it to be happy. So what is the point in living through a crappy day that gives you nothing, that only gives nothing to anybody else. There is no point in that… it is a waste.

Describes how he reacted to - and tried to deal with - the sudden prospect that he might die.
Print And I said to the doctor at the time… and the ward doctor was my HIV doctor at that point, because he was the head of HIV services and so he did the wards as well. I said, 'What is the scenario here, what is the worst-case scenario here?' And he says, 'The worst case scenario is two months to live.' And I thought okay, okay, what do I do here… And I said okay now get me one of the counsellors, I need to speak to one of the grief counsellors, because when I was admitted, they do it as kind of a standard you know. You had… if you needed to speak to you know a chaplain or a grief counsellor or any of those things… any psychological support that you wanted and I have always said no. I'd been hospitalised before and I have said no, no, no I will deal with this with positive thinking. And I said no, get me a counsellor. And I think it was only the second time I'd ever cried over the situation. I cried when I got my AIDS diagnosis… And I cried to that counsellor and I just have to accept the fact that at that point, it was quite likely that I would die. It is quite a shift from hope of going out dancing just a few weeks ago… Ugh hum. To moving into a new flat, and then bang and it being kind of… Yes. I was angry as well obviously. I went back to the anger that I had got when I'd got my AIDS diagnoses. When I talked to the counsellor she asked me how angry I was. And I used some choice words. And it was… Yes, it was, it was for me finally like okay this finally maybe the end. And I did that thing of actually getting in touch with people and saying come and visit me because I thought I don't know, I don't know whether this is going to be okay or not.

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