Interview 12

Age at interview: 38

Age at diagnosis: 24

Brief Outline:

He suffered from severe diarrhoea and peripheral neuropathy while taking an earlier combination of anti-HIV drugs, but he currently takes nelfinavir, 3TC and abacavir with few side effects. He has had to cope with HIV-related illness, depression and mania at various times in his life.

Background:

A gay man of British/Irish descent who works full-time and is in a long-term partnership.

More about me...

Age at interview' 38

Age at diagnosis' 24

Sex' Male

Background' A gay man of British/Irish descent who works full-time and is in a long-term partnership. He had a sero-conversion illness and was subsequently diagnosed at the age of 24.

Outline' A gay man of British/Irish descent who works full-time and is in a long-term partnership. He had a sero-conversion illness and was subsequently diagnosed at the age of 24. He suffered from severe diarrhoea and peripheral neuropathy while taking an earlier combination of anti-HIV drugs, but he currently takes nelfinavir, 3TC and abacavir with few side effects. Although his health is excellent now, he was very ill with HIV-related illness in the pre-HAART era. At one point he faced the possibility that he would die. He now runs marathons but is less financially secure than his peers due to spending many years out of the workforce. He has also had to cope with feelings of difference, low self-esteem, depression and mania at various times in his life.

He felt different, anxious and isolated from an early age.

I think it was just like as early as like four, and things like that, I really liked dressing up. And you know there was a real' I did have a real sense of not being quite the same as the kids in my class at school and things like that. I mean part of it was because I was left handed and that made me stand out. I had to wear glasses, again that made me stand out. And it was like you know back in the 1970s and it was like National Health glasses and which' break so often. But you know, they would, it made you stand out even further. I was very nervous, and didn't find it very easy to integrate either with like sort of my peer group at school, that's another memory. We lived out, we didn't live in a sort of urban area, we lived slightly outside. I come from [small city] and we lived about six or seven miles outside [small city], and there weren't many other kids around my age to associate with and things like that.

He put up with diarrhoea and painful feet on his new combination because it worked so well.

And then I went and… the then standard was d4T (stavudine), 3TC (lamivudine) and nelfinavir. And I thought right that's what I'm going to take, I changed a month later to d4T, 3TC and efavirenz. But there we were, I went on it and I took it and my viral load went down to undetectable very quickly, my CD4 count started to climb up but I started to get side effects. The first thing was terrible diarrhoea from nelfinavir, appalling diarrhoea, like you know, it really was like having a… it's like a tap turned on in my bowels. And it wasn't, it didn't lead to incontinence or anything like that but it was like whenever I went to the toilet, it was increased frequency. And then pain in my feet which I thought might initially have been sort of a running injury or something like that but then it just became unbearable and I had to go and see a palliative care doctor for. But I was so reluctant to change my medication because it worked, it really did work. Look at this, my CD4 count was higher now than it had been when I was first diagnosed, it was 550, it had never been that high, my viral load was undetectable. I'd go back the next time, your CD4 count's 700, your viral load's undetectable. So you know, this carried on for ages…

An irregular heart beat and high cholesterol were treated as potentially serious side effects.

I mean there are still biomedical issues actually. One of the big ones was that… and actually it did turn out to be very benign but I had a couple of elevated cholesterol results and I think they were just probably because I had a croissant or a fat cake before I went in to have my blood taken that morning because I was starving so I'll take my tablets. And I also developed a very, for some reason I developed an irregular heartbeat and it was taken incredibly seriously. And I felt as though I needed to go and see a cardiologist and things like that, like they do, you know not just ECG, the ECG picked up on the irregular heartbeat as well and then having to do like exercise ECGs and have this 24 hour tape on me. You know it was like Jesus you know, I'm in my early 30s and you know, and I'm very fit and I shouldn't actually be having to walk around with a 24 hour tape measuring my heart rate. And it turned out to be something called bradycardia, which is actually a function of having a low heart rate, a resting heart rate from exercise.

He was shocked that he progressed to Aids so quickly but he found ways to avoid thinking about...

And when I'd seen an HIV consultant for the time he'd said to me looking at your immune profile I wouldn't expect you to get in the least bit sick for five years. And I can remember saying, thinking it's only three years, this is wrong, it's not fair, it's only three years, it's only three years. So anyway, after two weeks I was discharged with TB and you know, which again I thought' I remember these jokes I made about it, I actually made light of it, oh I've got to write a great novel now, I've got consumption you know. And because I was historically minded, you know oh God, you know, as long as I had consumption rather than TB you know. But I thought it was quite a glamorous AIDS defining illness to have, and it was also an AIDS defining illness as well. And that was another' you know it was this kind of thing that I thought that means that I'm' well I know it sounds, again it's, it was such a' it means all my benefits are secure and things like that you know. And there's nothing, you know, my little world is walled off now. It's almost like a trigger for the next set of you know' OK it's got its bad implications but I sort of found these things that could go with it you know'
 

Counselling validated the anger he had previously skipped over, and he realised the seductiveness...

And also I realised yeah, actually I do have things to feel sorry for myself about. It's actually perfectly alright for me to be furiously angry about the way I was treated at school' about having HIV. You know that these are' but I mean how unfair it is as well' it was this you know. I had a number of friends I would talk to' I was talking to about that time and you know they've had loads of unsafe sex and they hadn't got HIV and I did! And then there was this sort of thing it always happens to me doesn't it. I got bad luck. Actually it can be very seductive place to be, self-pity actually. 

Initially he believed he could restrict his sex life because he was not aware of the full range...

I would never have dared to admit I had unprotected sex actually. But the reasons why would have been even more taboo as far as I was concerned. But it' no one had ever said anything about the pleasure aspect of it. And I can remember actually, there was just one 'I can remember seeing, there was a very, an elderly sexual health doctor at the [sexual health clinic] Clinic and I can remember seeing him in '90. I mean I was very good, I went to get my Hepatitis B vaccinations and get these regular sexual health screens. I mean what the fuck was I going to get? You know. It's like you know. Anyway you know, I was very good and went to get all these screens when my risk factors for getting anything was zero essentially. And I can remember him saying, you know looking at what, the sort of sex I was having and he said, 'And do you enjoy this? And do you think you can sustain a lifetime of this?' I said, 'Oh yes', you know, I was only like 21 or 22 and I can remem' you know it stuck in my memory and I can remember him just nodding his head. And he went, 'Fine, fine.' And then you know, I know who, I mean, I actually know it was a guy called [name of historical figure] who established the [sexual health clinic] Clinic and was a very human, a very, a very compassionate doctor actually. I subsequently found out and very, really realised what's involved in the realities of human sexual relationships and what feeds into human sexuality and things like that.

Compares an encounter about treatment with a HIV consultant and a counsellor.

I can remember him (the HIV consultant) saying we did another test and we've measured your T cell count, your T cell count is 400, that indicates that your immune system is on the brink. Now I clung to the fact that it took ten years for' ten years for you to progress from initial infection to AIDS and death. But here was I finding my immune system was already half gone' and I was like oh my God, I didn't have a clue what a T cell count was. And then he said you'll probably have to start AZT immediately and then it was explained you know' then I was like out of his office and there was obviously the counsellor who was actually completely different you know, he was much more sympathetic and human. He took some time to explain things and make an appointment, a follow-up appointment for me. And you know I mentioned the AZT and he just said don't worry about that you know'

Describes his seroconversion illness.

I was reading a sort of Ian McEwen novel in bed' on a Friday night in late April and I had a bit of a sore throat. And the next morning I woke up and I felt a bit tired and I still went off to the gym and I really noticed that I you know, I wasn't anywhere near' I didn't have anywhere near my normal strength. And then the next morning I was very, very fluey and I though you know, it is probably just flu, and it carried on for a week' I was in bed for a week. Hearing this program on radio 4 about HIV and it wasn't about seroconversion illness or anything like that. And it had this doctor on about how easy it probably was to catch and how, the' couldn't rule out it had been spreading saliva kind of thing and this Swedish doctor. What a load of bollocks that was. Anyway, but then anyway I started coughing and it went into the second week of illness and I still wasn't getting any better. And you know looking back on it I had all the things, it was a sore throat, I got a terrible headache and I sort of got slightly better and then I got' it's like a sort of pain in my chest and I started coughing incredibly badly, really, really deep coughing. And you know vomiting big thick gobbits of blood because I was coughing so badly. And it was a bank holiday weekend and all my fucking friends went away. Which it was like you know, and everyone thought I was getting better so they all went away and I couldn't swallow because the pain in my lungs was so bad. And I ended up going back home to my mum and dads'

Was facing multiple problems and was very angry.

And then, it was then that, it wasn't just the sort of reaction to the HIV, the denial about the HIV coming in, that so many other issues came up. I was just furiously angry. I just' anger, the anger I felt and'

It was all this bottled up' as much as I hate to use the term, it is a very accurate, it was sort of self loathing. You know all this bottled up aggression against myself, about being gay actually you know, and about then my failure, what I perceived as my failures. Seeing as I've been such a failure in so many ways. And then just like fury at people who I thought should have been there to protect me and I'd perceived as not doing it. And just yeah, real, real anger. 

And I was just like I haven't got a job, you know I've got no money, and I've got a terminal illness you know.

Felt he was badly advised and so missed out on medical retirement in 1990.

And you know' and it was certain I was going to get made redundant, and I'd been there three years, and I was going to get a month's salary for each year of completed service plus '2,000 plus all my pension contributions back because hey what did need a pension for, I was going to die, I had AIDS. In actual fact it was, you know, what I should have been was medically retired, and I had no idea of this at the time, that you know' I fulfilled all the criteria for medical retirement because what happened was when my sick pay ran out, they told me we're going to make you redundant. And in fact what they should have done and even though I was a member of a union' crap that was. I should have been referred to an occupational health doctor and been medically retired because I would have got a very, very good pension from' which I'd still have now, you know. It's retained for life because it was based, well it was a final salary pension scheme and I was on, in, that was 1990, I was already on '22,000.

When he was diagnosed with HIV early on in the epidemic he had good sickness benefits from work...

Because it was the first summer in my life I'd never had any responsibility. I'd never had to like revise for exams or think about getting work. It was the first time in my life actually that I had a sustained period of time off. Another thing, you know, during my summer holidays at university I'd worked you know and I'd' from when I was 16 I'd had a Saturday job and I'd like done, you know and it was like I don't have to do anything, I have to do absolutely nothing. And work is paying me to do this because I'd like' you know I think I had entitlement to, I'd been there for three years, I had very good sick pay entitlement and it was just great you know. And you know I can remember that feeling on a nice warm summer evening of thinking this is great, I don't have to go to work tomorrow.

Argues that prosecutions of people for HIV transmission stigmatises him as a potential criminal.

But I think it's really' you know the criminalisation of the transmission of HIV, I think you know, it's' Irrespective of the rights and wrongs of the behaviours of people involved, it's a' it makes me feel like a potential criminal, you know, that I'm a criminal, that you know' That, the very act of me engaging in sex and that is potentially, you know the' and I feel like I fully, I accept full responsibility for my own HIV status, that I was a sentient adult you know. You know, whatever else was going on in my life I knew that there were risks involved in my behaviour. Sex inheritantly involves risk, it was recognised in the 19th century when it effectively became' up until now it was impossible to be prosecuted for the transmission of a sexually transmitted infection or HIV when it was recognised that sex could result in pregnancy. Pregnancy could be an unwanted outcome, pregnancy could kill the women or the baby. Sex could result in a sexually transmitted infection. Gonorrhoea and syphilis were less treatable in the 19th century than HIV is now, you know. And it's just this idea that you know, it's just we've now' I think we just live in such a blame culture now, it's never your fault, it's always someone else's fault.

He has not told his parents about his HIV status to avoid hurting them, but he wonders if he...

But I never told [my parents]' and so they were wonderful about me, they love and accept [name of current partner] but I never told them about my HIV status. And the reason for that I tell myself is because I didn't want to hurt them and that is true because I didn't want to worry them that you know' one of your children pre-deceasing you, that was' and you know. And I thought I'll wait until I really absolutely do have to tell them and there was a time in '95 I thought how am I going to do this. And then treatment came along and I just, you know, the worry is that' I mean I'm offered advice from various friends that you should tell them, no I think you're right in' But my instinct is not to tell them, why impose this worry onto them. That no matter what I told them about therapy, treatments, they'd just see HIV, AIDS, death. Then another side of me thinks am I really doing this because I am actually deep down quite ashamed of myself?

I think if I had been diagnosed with and treated for a cancer, which would probably' would now probably lie in remission with good treatment for a lifetime, I wouldn't worry about them finding out or telling them. I think that is definitely something to do with it. No matter how unPC this might sound and things like that, and no matter how much work I've done on this or how much I've lived through it, there is still part of me which is ashamed of having HIV. 

While they always had safe sex, using condoms felt like missing out on a reward.

I think it, it (using condoms) felt like it was an inhibition, there was an inhibition there because of that. But I mean there was sort of you know' I mean it was actually at the time as well when it was first being discussed that in' it was almost like a reward, that if you're both HIV negative and you're in a monogamous relationship your reward is that you can have unprotected sex. There you go, haven't you been good. And we couldn't have that reward. And I can remember he had a sort of HIV scare that he had sort of bad gums and his dentist said to him, 'Oh you ought to go and get tested for HIV'. And thinking on that level it would have made it easier if he'd been, if the' had been positive. I mean I'm very glad that it wasn't, you know don't get' don't get me wrong.

Yeah, there would have been no transmission worries and things like that. 

Believes that the high level of service he gets from the NHS will not last.

I mean I think one thing that strikes me is how good my services are, HIV services, HIV medical services. I mean I don't use' and very rarely use any of the other services that went along with it. And they are very good, I mean contrast it to the chronic, other chronic disease areas, like my parents have both got heart disease and just like' they treat you a load of rubbish you know, because the services just can't cope. And, but on a' I've never had to wait more than half an hour or so for' I mean two hours once because they lost my notes and they didn't know I was there. But you know, I'm seen very promptly, I've always had an appointment available, I've got the latest drugs, you know, everything met to my needs. And I just don't think that that's going to be sustainable, that' you know, the number of people with HIV in this country is rising exponentially and that's not a failure of prevention campaigns actually. I think it's how remarkable how steady the number of infections in this country is you know. And who's going to pay for it? It's going to become an issue sooner or later that so much money is spent on anti HIV drugs, it really, really is.

When facing death he comforted himself that an early death was not unusual in human history.

Were you afraid?

Yeah, definitely. I mean, well also... an anchor as well, and the anchor of human experience I suppose. And also I was looking for something that provided a structure for the insecurities of life. And that's another thing as well with studying history, was' very aware of how' it was unusual for my generation for me to be very ill in my mid 20s, but it wasn't unusual in the human experience. That only you know' 50 years before they didn't have antibiotics you know. And even, you know I don't' that within my parent's lifetime, there were no antibiotics. Within my parent's, both my parent's lifetime a war was fought which killed significant numbers of people of my age group kind of thing. So it is this sort of thing that you know, we have lived a very unusual' and in sort of human experience, a very unusual' or we've been encouraged and we've developed these set of expectations which have been that illness' that haven't accepted mortality first of all. Which haven't accepted illness' and we have actually grown up with an expectation of health, of happiness and of beauty actually you know. And I mean these all feed into other sort of' I think a lot of people's problems with self esteem as well, things like that you know. But' and it did actually help ground me about that, that how' what I was actually going through wasn't unusual in human experience.