Study Paper No. 5
Riding the Roller Coaster: Experiencing Transitions from HIV to AIDS

PART I 

EXPERIENCING DIFFERENCES BETWEEN HIV AND AIDS

ASYMPTOMATIC VERSUS SYMPTOMATIC

A number of questions immediately come to mind as one grapples with the key differences between living with HIV versus AIDS. Both signal a transitional phase, however HIV is more obviously the focus for hope and empowerment whilst AIDS is still associated with death. Why this continues to be the case in the face of improved therapies for PWAs is, at one level, somewhat puzzling. In the industrialised world, effective treatment regimes mean that the increasingly popular trope "AIDS may not be a death sentence after all" spells hope for those able to access these resources. For most however, AIDS still connotes terminal illness and inevitable death and remains readily distinguishable from HIV for this primary reason.

 Indeed, there would appear to be sufficient anecdotal evidence to assert that in the face of better treatment, an AIDS diagnosis has become even more a marker of approaching death. This belief is commonly based on the sometimes erroneous assumption that diagnosis with an AIDS-related condition is evidence of a failed HIV treatment program and/or an unresponsive immune system. More pertinently, confident predictions of an increasing survival time for those diagnosed with HIV may offer genuine hope but simultaneously bestows undue pressure on health professionals issuing an AIDS diagnosis. In other words, an AIDS diagnosis still has many PWA asking "Is this the beginning of the end?". However, this was a question that most people diagnosed with HIV would ask themselves during the first decade of the epidemic - now for those who experience an HIV and AIDS diagnosis separately, the stresses associated with this question appear to have irrevocably shifted to the point of an AIDS diagnosis. This is not to deny the persistent stigma that accompanies being HIV positive nor we do wish to buy into the highly questionable Duesberg argument doubting the link between HIV and AIDS. Rather, this shift signals arguably the most important psychosocial difference between HIV and AIDS: the transition from stigma to illness. Very rarely in the Transitions study did participants speak of experiences of discrimination and other acts associated with stigmatisation as a contemporary feature of their lives. Most participants had resolved any lingering problems about their identity as a PLWH/A and shared far more readily about the day-to-day, pragmatic difficulties of coping with illness.

So one of the first questions that emerges in discerning differences between HIV and AIDS, is whether AIDS itself is a useful term in analysing illness experience? It certainly has a pivotal role in the social construction of the disease. But how does a person understand the physical effects of illness in relation to an AIDS diagnosis?

A standard question put to all participants towards the completion of the interview was:

Overall, what do find are the main differences between when you had HIV and no symptoms compared to your life now?

 This elicited a variety of responses, many of which succinctly encapsulated the key differences between living with HIV and dying of AIDS-related illnesses. Overall, there was a more inward reordering of life goals and the very real confrontation with illness and dying produced a great variety and complexity of illness states.

Relief

 There were those that expressed great relief at having finally reached the final stages of illness having lived with the spectre of AIDS for many years. Daniel says: 

Part of me is relieved you know like I've been waiting for it. In 1988 I was diagnosed as having PCP wrongly and then, undiagnosed and then re-diagnosed and undiagnosed, and it was like the grass was green and the trees were sort of treeing, they were doing only what trees can do, um, and the flowers were just this intensity of colour and there was this feeling of um, I've got to take it all in. For me, I think that I had to complete the process. 

In Daryl's case, this relief triggered a more relaxed demeanour: 

Yeah, I'm more placid, a lot more placid. Ah, I can't hate anybody. If I dislike somebody I'd rather be nice to them and walk off. I can't be mean to them no more. 

 

Regaining control

Other participants spoke of their increased capacity to gain control of their lives through the more stringent management necessary to respond to AIDS-related symptoms. Indeed for some, confronting AIDS had proven to be powerfully liberating. Paul spoke at length about this process: 

I like the way I fit in the world now. When I compare it with the business, ravaging the planet type of existence I previously had umm.. I like who I am and the way I am now. The difference is so great that it is tempting to say 'I am glad I got the virus, because now I am a nice person'. That is crap. I would rather be a nice person without the virus but having the virus, becoming ill has created this circumstance where I can find out who I am, be that person and prepare for the end of my life. That is a luxury that not many people ever have. And in that way I feel quite fortunate. Also I feel a little bit fortunate that I have some rough idea about when all this may occur, which the rest of the world very seldom has. And for some reason that is important to me, I am very much a person who likes to be in control and to predict when something is going to happen. I don't like surprises and I certainly don't want to be surprised by death. I would rather be a participant in the death process than the victim. And I mean a participant, there, awake, knowing what is happening and voluntarily letting it go, letting go of this life. I think that this makes me a very lucky person. That I have this opportunity to do that, or at least have a shot at it. 

Paul is not alone in his sense of empowerment at having managed his health under such difficult circumstances. Bruce says: 

I think, psychologically I'm handling it better than I was originally because, the original stage, of course, everybody knew, or, all they knew was that people were going to die. There was a hundred percent death rate. And I kept saying to myself well, I'm alright... And I've seen my friends around me who are getting sick. Come out with Karposi's Sarcoma and spend three weeks in hospital and I thought, 'I'll be next'. I used to say to them, 'I'll be joining you soon', you know, all these negative thoughts. And it didn't happen, touch wood, you know. My aim now is to go and see the Olympic Games in Sydney. I still believe I'll still be here in six years time, so I've got a fairly positive attitude.

 

Anger 

For others, the experience of transition from HIV to AIDS was entirely different, as suppressed anger and resentment bubbled to the surface. Neil struggles to cope with the unremitting nature of his illness: 

I don't like having the feeling of being unwell all the time. I hate that sort of feeling and people tend to not ring you because they're terrified you're going to say 'I'm not really well' so I usually lie and say, 'Oh, yeah I'm fine you know and things are fine' ah..even though you've just thrown up. 

Charles lucidly articulates the need to share the burden of AIDS with others whereas HIV had been far more easily self-managed: 

Being HIV was sort of more of an inconvenience and an embarrassment and you had to sort of play games with people and suss people out before you could be honest with them. Um..and then still people would be shocking, write you off even when they made out they were ok about it. That was HIV. Now, having AIDS related conditions, it's um, very very terrifying ...you know, you don't even give a stuff about telling anybody anything I mean I'll tell you anything you like, I'll tell the person across the road anything that he likes because you have a real need to let people know what this is like.

 

Physical differences 

The physical impact of the final stages of AIDS clearly differentiated this phase from earlier asymptomatic periods for Jeff who died six months after the interview: 

Well I don't do a lot more, because I haven't got the energy to, I get very tired easily, I sort of pace myself with what I do and when I do it.

Previously, Peter felt he "could do as he pleased" but now he says: 

..if I get my strength back just to be able to go away on a holiday, I'll be happy. 

 

The "Roller Coaster"

 Others who did not experience such a clear transition from asymptomatic stages to debilitating illness spoke of the "roller coaster ride" experience. Despite a fairly rapid decline in health, Tony describes this succinctly: 

Well, it would be how debilitating I have become, in that period, that short period of time... I can't believe that this could happen to a body so quickly. And it's not just me giving in, because I just don't give in. It's just the way that it is and the hardest thing is to accept that it is happening. And once it starts it's like a rollercoaster ride, up and down. Well it feels like you are on a rollercoaster ride because you can't get off now you are on it. You can't get off until it stops and when it stops, you stop with it, sort of thing. I think that's the hardest thing, and the fact that so much change has happened in such a short time. Your life is just not your life anymore. Although you feel in control of a lot of it, it's out of control and you don't have control of that.

And Kim is also aware of the fluctuations in her capacity to maintain self- control: 

I think well with me, the head thing's the biggest. Just trying to deal with that and trying to stay and talking to people and being without losing it and like there's times when I feel like I have lost it and then I'll be walking around apologising to people and they'll say, 'No you were fine'. 

 

The Ticking of Time

 The constancy of the presence of AIDS evoked an urgency in some about the precious nature of time: 

John

Well I've got AIDS now, I'm not just HIV positive. Even though it was only PCP... you tended to think well, how much time have I got left now? 

Barry

I can't ignore it. It's like the mirror is right there. I never get a chance to sort of say....I don't get a half hour off. It's there all the time. 

In Gerry's case, time had emerged as an important issue only very recently: 

Sometimes I feel like I have missed out on a process, going through some sort of process of accepting it. I have had to sort of find out and say 'Yes, well I have to get my shit together and do it straight away'. You know what I mean, the time is a lot more urgent I suppose. Sometimes I feel I have missed out on something. 

For some participants, like Roger, this necessitated a revision of what was important in their life: 

You know, you can die at anytime. All you know is that you may die sooner, therefore if you're putting things off all the time you should do it now. So, going stage four [of AIDS] is pretty much the same, you sort of say 'Oh, maybe there might be less time. Maybe I should review my priorities and change things'. And that's ok. 

The sense of limited time however must be juxtaposed with, in some people's cases, the sudden availability of free time when work and other physical duties are no longer viable. Marcus says in response to the question about the difference between HIV and AIDS: 

Um, I mean, the presence and absence of work I suppose and then with that this thinking time thing. You know, like so much time to think about yourself, you know? 

And Don is conscious of the emotional baggage that having this time might evoke: 

Emotionally it's harder because all of a sudden you're not well enough to do anything and so you've got a lot of time of sort of internalising what you're feeling and thinking. Um..I've always been um a relatively good talker but I'm finding that just about everybody that I encounter I can't just say hello, I'm fine, but sort of [a] can of worms comes out {laugh} each and every time I'm asked how I am.  

Derek also speaks of the stresses associated with confronting time: 

The biggest thing is stress...I mean you don't wake up happy. Like, before you had AIDS, you had every day to live for, every day's a mystery, an enigma. But now, it's just another day you get up with, actually every day, you want it to take another twenty-four hours. 

 

Different Eras

Although we have used AIDS as the entry point for this study, in some ways we were reticent to use the term once the interviews were underway. We were especially careful not to use the term in a universalist, assumptive way that might have precluded a range of meanings and signifiers potentially bestowed by the participants themselves. Nevertheless, some interesting patterns emerged. Those who fought hard in the early days of the epidemic to confront society's awkwardness about the ravages of AIDS and render the disease visible, were determined to emphasise the very physical differences between HIV and AIDS. Marcus' story is interesting, however, as it demonstrates how the experience of AIDS can blur strongly held convictions: 

..several times actually I have come out with the comment "I have AIDS' and it is only really the last six months, or less even, that it actually flows out easily without catching in my throat. Because, in the past, I have actually confronted someone, a young fellow who was very very ill, and everyone from five-hundred paces could spot him as someone with AIDS, and he kept talking about how he was HIV positive. He was staying with us when he was very ill, he moved out of his place. And I ended up screaming at him one day and saying 'Look [NAME] you have got AIDS. You are not HIV positive'. So when I sort of knew that I was officially AIDS, I knew I had to say 'I have AIDS'. But in some ways I don't feel that different, you know what I mean. It is not like the colour of my skin has changed or someone has printed it on my forehead or something, I am still [Marcus]. 

In some instances, especially for those who seroconverted in the late 1980s in the midst of a complicated system of HIV/AIDS classifications, an AIDS diagnosis was not necessarily "the beginning of the end". Participants spoke of a "premature" Category IV AIDS diagnosis and/or an improved capacity to cope with AIDS-related illnesses through better treatments. Anthony, for example, was diagnosed with encephalitis (an AIDS-related condition) when he first discovered he was HIV+ but he positions himself differently to other PLWA, particularly those with a lower CD4 count: 

I had thought 'Oh shit I think I am stable at my count' 180/200 for 6 years but knowing that maybe it may drop real quickly for some unknown reason and then I go 'Shit, that is a really different state to go into'. That next point again from an AIDS-related condition to going to full blown AIDS. And I am not sure how I will cope when I get to that point. 

 

Illness Trajectories 

Our research shows a clear relationship between diagnosis of AIDS and the self-construction of an illness trajectory (see Nokes 1991 for more on this concept). However, the time and social context of that diagnosis critically altered the sorts of trajectories constructed. In turn, there was a great diversity in individual perceptions of a sense of mortality. 

Robert, diagnosed with HIV in the very early years of the epidemic, speaks of his response to his first AIDS-related illness (in 1991): 

I got a really big fright in that first illness. I think we all do, I know that I did. Had this idea that 'I was going to be one of the survivors and I am fairly invincible and I will be around to tell the tales to generations to come' and all that sort of shit. And it bought up my mortality, like a slap in the face. When I got out of hospital, every encounter was the most important encounter in my life. Every hello had to be heartfelt, I really needed to sit people down in my life and tell them how important they were. And I had to value everything. I was also very overwhelmed, it was the first time I had been on the receiving end of physical support from other people. 

And Frank (diagnosed HIV+ 1985, first AIDS illness 1994) expands further:

There's a certain arrogance that I think I had when I was HIV positive, the arrogance of being well, looking fine, can't tell that I've got it, and a sense of um..maybe I'm going to be one of those ones who doesn't get sick, there was that whole sort of percentages and figures when I was first diagnosed that hey, there might only be twenty percent of those diagnosed that will go onto full-blown AIDS, so you sort of kidded yourself in the mid-eighties...and um..the big difference is suddenly 'Ok, I'm mortal, I'm not going to live forever and let's hope it's not an ugly infection. Let's hope it's sort of clean and simple'. 

The strength of conviction then amongst long-term survivors must be contrasted with their difficulties in coping with the first signs of AIDS. Particularly for those who had overcome very serious seroconversion illnesses and periods of hospitalisation, the return of symptoms was a poignant reminder of the terminal nature of AIDS. 

For those who seroconverted much later, there was a tendency to be more philosophical about facing AIDS illnesses, with the improved treatment outlook possibly enhancing their coping capacities.  

David

I've just been able to accept the condition and my aim is to make the most of the time I have left, and if you like thinking of it as early retirement is probably a good way around it for me because then I don't have to chop off aspects of my life, and say - there's no point in doing this because who knows how long I've got... 

Whilst some differentiation can be made between the onset of illness depending on the year of HIV and AIDS diagnoses, what we particularly sought were those influences and processes that determine how an individual conceives and then perceives themselves on the illness trajectory. A sample of participants highlight the variety of responses: 

Jacob

I guess it took me, maybe..three or four months after I was diagnosed and a couple of months after I was um..sort of being treated for PCP to actually realise that being infected with HIV and having AIDS were two different things. 

John

[Was there a point when you realised, before you got sick or around the time you got sick, when you realised that you didn't just have HIV but that things were more serious?] 

Well, only when I got PCP. And uh, one of the research nurses said, 'Oh has the doctor told you that your category has now changed?'. I said 'No', and she said 'Well, it has. It's changed from HIV to AIDS'. And she was a bit annoyed that the doctor had not told me that my classification had changed. And that sort of, gives you a big fright then because you think 'Well, ok, I'm on the AIDS um list now, sort of'. And uh, it did sort of shock me at the time. 

Brian

It wasn't clear to me at that stage what they were really trying to say to me... what do you mean, like you've either got HIV positive and you're going to get sick and die or you haven't got the virus and you're going to be alright? ..um and what do you mean it can sit in your body like ah a dormant cancer or whatever for years and years? 

The differences between HIV and AIDS then cannot be easily reduced to the point of diagnosis as the original hypothesis might have presumed. Living asymptomatically with HIV and dying from AIDS-related symptoms merely denote two stages in a continuum from point of HIV diagnosis to the final death. Even these end points lack precision. For some of the participants, diagnosis with HIV came as a major surprise but many also had a sense of their serostatus prior to diagnosis, particularly those who received a dual HIV/AIDS diagnosis further into the epidemic. Thus, the importance of social context cannot be stressed too highly. The brief but rich history of AIDS has already given rise to a vast assortment of sites and stages on which people living with HIV/AIDS respond to the socio-political, cultural and economic circumstances surrounding them. 

Experiencing AIDS is a complex mix of physical, social, medical and emotional processes, and individuals respond in diverse ways. In focussing on the differences between HIV and AIDS in the first hypothesis, we have already witnessed what a complex mix of psycho-social processes are involved in individual's responses. Not only is there a diversity of responses within an individual - the variations across different personalities and groups are striking. Even the relatively homogenous group of Transitions participants demonstrate the difficulties in attributing a particular response to any specific sociological category.

PHYSICAL RESPONSES TO AIDS 

Sex

 One of the more obvious physical ramifications of AIDS is its impact on sexual desire, performance and identity. Much literature has been devoted to the impact of AIDS on sexual cultures in a preventative context but little attention has focussed on the sexual lives of symptomatic PLWH/A. Green (1994) and Sandstrom (1996) both provide credible exceptions, even if the majority of their research subjects were still living reasonably well. 

Body Image

 Many of the Transitions participants spoke of the difficulties in dealing with a declining body image. For some, this affected their whole capacity to engage in a physical relationship. 

Patrick

I mean I miss it, and I grieve it and all that stuff and that would be lovely, but what I miss is the intimacy. The sexual part of it is so, so with that. And probably the biggest thing that gets in the way with me is the stuff around body image, because that's changed, and how I perceive how I look, and whether I'm attractive or not, and certainly in the last six months in particular, I've felt really ugly, and really "AIDSy" and really unattractive to the point where I imagine I'm just not giving out any of those sort of vibes. I sort of have had a major crush on someone a while back, and it didn't work out, and it was so painful, the rejection stuff in it, that now I don't even know if it had anything to do with my HIV status, but part of me thought that it possibly did, and that was just immensely difficult. 

Ian talks despairingly about his appearance: 

And I look in the mirror sometimes and I think "Oh my God!" and I feel so gaunt and I think that that is the only thing that really gives the whole thing away. If I didn't have to worry, not that I worry about it, I couldn't give a shit about it now, I have got to the stage where I don't care anymore. 

Louis also finds his attitudes have changed about the need to appear "impressive" in the prevailing sexual culture:

Well, what I have noticed since the illness was there is - the other thing that really comes to mind is that - I can't be bothered with a lot of things like you know, how you get yourself all dressed up and ready, and go to one of the pubs and travel there and go to all the hassles... 

Desire

 Gerry and Tony both openly encapsulate the debilitating impact of illness and its immediate effect on sexual desire. 

Gerry

Obviously after being so sick I had no sex drive at all - it just went, and I had a fairly healthy sex life before that,... it sort of came back slowly, the libido sort of came back. I probably went to a couple of Club 80 [gay entertainment venue] type things, once or twice, to see if it still worked or not, and that was o.k. but I didn't really enjoy it, I was really worried about meeting people. 

Tony

Well, it has been zilch since I got sick, these four months. And the strangest thing of all is I've had no sort of sexual urge in that time. I can't even remember getting an erection for...months. You know, I had spoken to the doctor.. it's probably I'm so concerned with just surviving, getting through treatments, everything that's happened in that period of time, that sexual side of things seem to be way down there and just coping and coming to terms and trying and get your life back on some sort of track seems to be the most important thing. You know people say 'Well is it because you feel you got this through having sex that it's....?' Well for me that's a lot of crap. That didn't turn me off, I mean I knew years ago that I had HIV. I still had, you know, a sex life. At this point in time it doesn't even sort of enter my mind. 

For others though, AIDS brought up the challenge of confronting what it was that they were really seeking through sexual experience: 

Damien

..since then [HIV diagnosis] I have practised safe sex, in that I've only sucked penises but whether they were safe or not I don't know and I've just masturbated but I had a huge libido. Um...which was a problem and I probably should have had counselling. 

Marcus

And just some guys that I have known, right to the end of their diseases have gone down to the saunas and managed to have sex and you know even... well I have been swimming at swimming pools an awful lot as well and there are a lot of disabled people go to swimming pools, like amputees and paraplegics and... I started to see people like that and you know.. you can be sexy, you know just because.. But it is still a battle, you know even the purple spots. They are visible during sex and when we are sitting in bed together naked.. you know. You know, [PARTNER] and I try and joke about them and stuff but.. yeah, it is hard. 

Age

 Certainly, the older participants were conscious that their age was a factor in downplaying the role of sex.  

Robert

But in terms of sexual practice and getting laid, basically, and my confidence in negotiating that, that goes through big slumps and often it is hard to decide or determine whether that's intrinsically tied into my status as a person with AIDS or whether I am getting old. 

Anthony

There is not so much of a desire for it. I don't have, don't have a fear of it, just the urge is not there as it was. And that could be partly because of the AIDS, I don't really know the medical/scientific side of it, maybe because of AIDS that the urge is not there. It maybe partly because of treatments that the urge is not there and partly because of being 40, and there is probably a whole range of factors that have diminished my desires to go out and bonk, bonk as much as I used to... 

Paul

I am now what I think I would have been at about 68 or 70 or something like that and that is not pleasant. I also, at time feel somewhat unclean because of this contamination and I think that those two things is [sic] the reason that I have not had sex with anybody. I feel contaminated and able to contaminate and I just don't think that my body is anything like desirable. 

For the bulk of the Transitions interviewees then, the importance of sex had substantially decreased, even for those whose health was sufficient to sustain active sexual relationships. The significant amount of time and energy required to maintain sexual contact was simply not possible for so many of those living from day to day with debilitating illness. Again, it will be interesting to view the impact of new treatments in relation to PLWH/A's sexual lives over the next few years. 

Pain 

All participants were asked specifically about their experience of pain. This question was deliberately placed towards the end of the interview so participants could place their understanding of pain within a framework they had already constructed during the interview. The research team was particularly interested in how pain was linked to their notion of debilitation. More specifically, we wished to gain more understanding of the relationship between one's experience of pain and one's conception of themselves as a PLWA. 

The most obvious distinction to be made between the responses to this question concerned those who addressed the physical dimensions of pain versus those who had been more affected emotionally. This distinction could not necessarily be drawn between those who had experienced more painful AIDS-related symptoms versus those who had experienced very little. Julian, for instance, has experienced severe toxoplasmosis and bone marrow cancer, but in response to the question concerning pain, he answers: 

Well there's been times where I could almost scream. One of my biggest problems is loneliness, and it drives me around the corner. Mm. I get angry... 

Charles also focuses on the non-physical dimensions of pain: 

Pain, um..I just get very tired a lot and I think that that's because I'm mentally exhausted from the whole bloody trip. 

Others, like Bruce, interpreted pain more laterally: 

Probably the main pain I have now is that I s'pose I'm a bit negative about my financial situation, even though I've still money that could probably last me about ten years. I don't know whether I'm going to be here for another ten years, you know what I mean? 

Acute Pain 

Most respondents, however, chose to concentrate on episodes of acute pain. In terms of physical pain, responses tended to be divided according to the type of symptoms experienced and their chronicity. For those who had suffered temporary AIDS-related symptoms and acute pain and were only very recently re-experiencing mental illnesses like depression and dementia, the following comments were typical: 

Paul

I had a lot of pain at one time, terrific amounts of muscular pain which just disappeared, after months and months, just disappeared overnight and God knows where it has gone. 

Gerry

I think I've been fairly lucky. When I was in with PCP, I ended up in the intensive-care one evening, I don't remember any of it, but that was the second night I was in. I was having unbelievable muscle spasms so I suppose I can say that that was really severe, that was almost life threatening. Other than that, I haven't really had any physical pain except for just a circulation problem that's not really a pain, so I've been very lucky so far. 

This feeling of relief is evident too amongst those who have experienced a particularly harsh episode of pain but remain relatively pain-free: 

Ian

This pain thing really was when I had this clot...you lay on a bed about this narrow and she got me up onto the bed, and I said 'I just can't go through any more, you have got to get me down, I just can't stand the pain'. I said 'I am not a complainer, I never complain about anything, but this time it has really got me'. But that was about the only time I have really known really bad pain. 

Robert

I still get episodes of really intense headaches that can last for three days of wipe-out with just no function. And then I have a regime of pain control which usually works itself up to thirty milligrams morphine tablets every four hours and often they don't work either and I have injectable pethidine in the fridge, and that is just like the 'phone goes off, the lights go down. But you know, mostly I function really without much pain, but I do get these episodes. 

Rationalising Pain 

For some participants, their experience of pain is rationalised along with all the myriad of other emotions they encounter. To them, bestowing the label "pain" elevates it to a status they do not wish to grant: 

Bill

Well, I haven't really had a lot of pain. I have been bloody lucky. It's probably been more the hideous discomfort which some people might construe as pain, I would consider it more discomfort because there's an expectation of it,  

You were able to make that distinction between pain and discomfort I mean..? 

Yeah. It helps I think if you think no I'm not in pain, I feel like shit but I'm not in pain! 

Neil

I like to get on with my life. So I tend to ignore it. But then, I haven't had chemotherapy like many of my other friends. But I had quite a lot of chest pain and just lung pain. But I tend to ignore it. I just manage it myself I think "Oh well it's there, I can't do anything about it, so let's get on with life a bit and..." 

Tony is able to acknowledge the severe pain he has experienced but like all his responses to coping with AIDS, he sees it as a challenge: 

But while it [chemotherapy] is doing me good, I lie there and think "Well, no gain without some pain, I guess" but umm.. for how long you can go through with that, I'm not sure. I always get upset when I have the chemo because I don't like that toxic poison going into me. I know what it is but it's my only chance at having a bit more time. So I take that positive outlook to it. 

Other participants cope similarly with pain by recognising its uncomfortableness but trusting that it is a momentary experience: 

Derek

Oh, I was getting cramps through the body, severe kidney aches, liver aches, bad chest pains, but that's all from anxiety. So it comes and goes, you know. Just little things, things you wouldn't believe... they can be just so small. You know, they can come one week and go the next, just little things. You know when you're healthy, just by the way you feel inside. With HIV I find that. You know if you're healthy or unhealthy. 

Brett

You do go through incredible pain sometimes with some of the procedures. Well, a lot of them are very uncomfortable, shall we say, rough, extremely but, I just close my eyes and think of England. I hate having my blood taken. I just loathe it, I really just hate it! And that's only you know blood letting. But all the endoscopies and the sigmoidoscopies and the colonoscopies and [laugh] everything else they shove up and in your body..it's uncomfortable. 

Illness Settings

 Acknowledging pain, for others, was triggered by the illness setting. Kim, for example, directly relates pain to her hospital stay: 

You look around and you're in hospital and you think shit, you know, this is where you come when you're in pain so..{laugh}. Yeah..it's just been a really really big head spin for me. 

Whereas for Daniel, the process of hospitalisation is actually an opportunity to relieve himself of the burden of coping with pain: 

I quite like being hospitalised in a sense... because I'd actually got so ill, you know and it's been an opportunity to let go. And um..to be looked after you know and to say 'Look, I don't want to fight this fucking thing any more!'. And I really do get sick of it, you know, the whole HIV psyche of the virus. 

Combatting Pain 

Like many of the other areas investigated, it was vital for many of those interviewed that there was some certainty amidst the complexity of AIDS, particularly when experiencing pain. For Jacob, it was important that his pain be labelled:

I was just feeling basically ratshit, you know the couple of weeks leading up to going into hospital. Um..and sort of getting headaches and stuff and then, I was one of the small percentage of people I guess who can say that ended up getting what's known as lumbar puncture headaches. 

Others coped with acute pain more actively, especially those eager to nullify its debilitating physical effects with recreational drugs: 

Frank

But the worst definitely was the histoplasmosis. Like extraordinary pain, and again I'm not big on pain you know personally so, apart from the morphine I was chain smoking joints just to sort of smooth it out. And that works, that works. But again I'm unconscious practically and to me that's not a life. Ah..I don't really like getting stoned every day but that's my experience of pain. 

Marcus

Because I was using recreational drugs, I was able to sort of rationalise away pain and stuff like that and so it probably wasn't until... maybe even until I got the K.S. [Karposis Sarcoma] diagnosis, or several months later, like six months later, I started to realise the pain was in my legs. But even then I kept thinking that 'Oh, this will go away. It will go away.' 

Jake

But I don't want any pain... they're going to give me morphine. I keep asking. I think it's sensible. I've seen enough people go through pain. I don't mind the occasional eccy. But I don't drink much any more. If I do, I sometimes collapse.

John

It's more nausea and stomach you know that's one of me biggest things is nausea and they're working on it, the federal and the state government at the moment to try and import a drug which has cannabis in it. 

Again, many of these participants did not have a sense that their pain was permanent. Indeed, even Jeff, so clearly in his final stages of AIDS with recurring viral meningitis, speaks of pain in the past tense:  

I can't describe pain but oh, very intense, yeah. It just drove me crazy. You thought you were going to go mad. 

 

Choosing When To Die (Euthanasia)

Of course, any discussion of pain for those in the terminal phases of their illness is likely to raise the topic of euthanasia. However, it was surprising that so few of the participants raised euthanasia or suicide without prompting [interviewers pursued the matter only if it was raised by the participant]. In an era of improved treatments, even participants hospitalised and very sick were able to picture some relief from their pain. Patrick's experience is illustrative: 

When I've been really sick and I've been in lots of pain, I suppose it's interesting, it's such an odd way of being. I mean it affects so many things in your mind and your brain and what you're thinking about. I was quite ill with this stomach thing I had, and I was just cramping constantly with this shooting pain, and I wanted relief, but I don't think I was thinking 'I just want to die'. I wanted the pain to stop. 

Roger also has suffered excruciating pain but his comments below should not be interpreted as a serious plea for euthanasia assistance: 

Pain, to most people is, oh 'I've got a headache!' but to me, pain is when you grit your teeth and scream. You know, and that's since the chemo. Twice I've been back to [hospital] with this nausea headache and you do get to the point where you beg to die. 

In this respect, Louis' comments are unrepresentative of our sample: 

I've got a low tolerance to pain. I don't whether that's interconnected with what you're actually asking but I don't like the thought of being laid up in a hospital bed, and just being kept alive to suffer a whole lot of pain, when there's no future in that, sort of thing. If it's just a prolonged existence, then I don't see a great deal of point, when it's just really to suffer. 

Nevertheless, this study should not be interpreted as one advocating against legalised euthanasia. Rather, it is more likely that it reflects the improved pain management amongst PLWA, and the fact that so many of the participants, even those hospitalised at the time of interview, could still imagine a pain-free future. To this extent, suicidality was only a very minor issue amongst the Transitions participants⁶. 

SOCIAL RESPONSES TO AIDS  

Relationships

 The very limited role that sexual activity played in participants' lives cannot be solely reduced to a lack of sexual desire and poor body image. For a range of reasons, only five (5) participants in the Transitions study were involved in a permanent relationship at the time of interview. Several had lost lovers and partners through AIDS but many simply felt incapable of sustaining an ongoing relationship. Some acceptance and intimacy was possible in a setting where serostatus was known: 

Mick

I suppose at the end of the six months I was seeing him I felt a little bit better about my body but at the same time I do sense there were tensions to do with the fact that I had AIDS and um well he was pretty together about sleeping with someone who was positive but there were issues um to do with sores, um... 

Family

 However, more prevalent was the fact that most spoke of a need for more fulfilling relationships with friends and, in some cases, family. Mick, again, expresses this succinctly: 

Since '89 I have had a remarkable transformation with my relationship with the family. I mean, I know it's partly because they think I won't be around for much longer. But it's also because they now appreciate how important that relationship is to me. I've made it quite clear to them that um I do want them around. 

The affect that families had on participant's capacity to cope with the transition from HIV to AIDS in many respects reflects the pattern established earlier in the relationship, particularly with issues about disclosing sexuality and HIV status. In other words, few experiencing difficulties in sharing feelings about their sexual preference and HIV status with members of their family prior to becoming ill with AIDS, were able to fully resolve these issues in the terminal stages. Derek offers a typical example: 

I don't like to go near the family too much now. Or me twin sister and her kids and we're very close. It's because they don't believe I've got AIDS, they reckon it's a sympathy story from the alcohol. Because she still doesn't believe the fact that I have AIDS. But it worries me that if I get sick down the track that it's going to freak them all out, like losing weight and going up there and looking like death. So that sort of has a lot to do with not going up seeing the family much, and staying away from them. 

And Barry's difficulties in coping with recent AIDS illnesses have only compounded an already dysfunctional relationship: 

Even though there was only three of us and I was really tight with me Mum, there wasn't really a lot of love lost, between us. I'm pretty selfish and so are they. But [you get] that "you got that disease" [quote from father] as if I did it on purpose, to annoy him, so he couldn't hold his head up at the bowling club. My son's a "poofter" [slang for homosexual] which I'm not but I mean it's a tiny country town, if word got out, Dad would be totally...I don't want that to happen anyway. I mean I don't like the man, but I don't want him to go through any pain you know. I don't point any fingers, and I don't expect any retribution. 

Nevertheless, whilst patterns of emotional response to disclosures about sexuality and HIV status tended to follow long-established family behavioural norms, it is clear that the onset of AIDS-related symptoms was a catalyst for the expression of deep-seated convictions. For some families, this presented possibilities of "burying the hatchet": 

Brian

It's one thing that I've noticed also in the last couple of months... in my case and in the majority of cases that I've seen, it brings the family back together. I'm a real classic as far as that's concerned, um, [with] my mother and father. 

Indeed, for Charles, other relative's discriminatory approach to AIDS became a bonding experience for his own family: 

My cousin was [HIV] positive for two years and he just hated me bitterly because I'd been positive for so long and there wasn't anything wrong with me and he'd led virtually a pure life compared to my purely hedonistic life {laugh} and he couldn't deal with that. Some of my other family, cousins and aunties and that can't deal with that either. But my own family know, we're much closer than what we ever were. They've shown a lot of care, they've shown a lot of interest, they know more about new treatments than what I do. 

For other families, it was more a pragmatic issue where they felt they could only contribute effectively once obvious symptoms emerged. Julian and Lindsay's responses are apposite: 

Since your illness, how's your relationship with your family, with your parents? 

Well, they've actually improved... they became more understanding I think, compassionate. 

Lindsay

I think it's made it easier for my Dad to show his feelings, because he can give me a hug anywhere now - it doesn't worry him. 

However, the arrival of AIDS symptoms in Con's life triggered an opposite reaction from his family, particularly when details about his will were discussed: 

There's friction there because, you know my parents are saying 'Why go to a solicitor, why not approach us or whatever?' but you know the relationship has never been too good anyway between me and my parents. So I thought well bugger this, I'm not going to put up with any more of this shit and um you know I separated completely from the family really. And that's the way it's been really for um for the last seven or eight months or so. I haven't heard from them. I just go about and live my life and if they don't like it, well they don't like it.

Interestingly, where participants had experienced AIDS symptoms but had subsequently improved, opportunities for confronting family difficulties were more easily avoided. Gerry disclosed his HIV status soon after diagnosis but speaks of more recent circumstances: 

But since telling them, since the diagnosis, I suppose the relationship hasn't changed that much. I'm still a bit of a loner and they tend to not pry or interfere too much and they haven't really told me all that much about how they feel. The eldest member of the family, one sister, seems to know what the rest of the family say and stuff so I still don't think they are sure what to say so they still let be on my own a bit. But I think it has improved, it is a lot more relaxed than it was and family get-togethers I sort of enjoy. There was never any problems but I just used to think 'Ooh, not another family get together!' but it seems to be a bit more relaxed. But we are probably still not really talking about it, it has gone back into denial a little bit because I am actually looking well and I think they are happy with the way things are and don't really want to talk about it. 

These comments merely add weight to overwhelming evidence about the immense difficulty that most modern cultures have in publicly discussing issues around death (see Kellehear 1984). Rather than perceive this discomfort as a deliberately calculated lack of support, some participants were able to acknowledge the broader context in which their relationship with their family was occurring:  

Marcus

Our relationship is improving. I have heard some people with AIDS that express a lot of anger towards their parents that they, y'know, like 'My mother won't talk about it, she changes the...'. I mean because those things happen, my mother does change the subject quite often and doesn't want to talk about it and sometimes my father says really stupid things like he is not acknowledging that it is happening and my brother doesn't even acknowledge it at all. But I feel like I have got to appreciate it in context of their environment, like they are all quite suburban people living in the suburbs, like I was. 

Patrick

I feel enormous pressure from the networks, and from my friends and my family in a whole range of ways, particular members of my family who have difficulties in actually talking about IT, it's not that they want to reject me, they just find the death stuff really, really hard. To some extent I include my mother in that, and that's probably one of the most significant relationships in my life... If I raise the big, dark, black things, she says things like "Well, you shouldn't think about that, dear" - stuff like that - now she does that out of her own stuff obviously, but I get frustrated.  

An inability to articulate feelings associated with death certainly placed a strain on participant's relationships with their families, particularly as the affect of AIDS and immanent death heightened emotions from both sides around attachment and reliance on one another. For someone like David, such awareness could even defer disclosure: 

Naturally, I was a bit reticent about how the family would receive the news because I'd never said anything about my sexuality or anything like that. They could suspect that if they wanted, but that's my business. It's never actually been stated at any stage, but the main thing is the family were shocked and worried, not that I had AIDS, but that AIDS is a death sentence. And I suppose we're all conscious of that. We want to make the remaining time as good as possible. 

"Making the most" of the final months can amount to a very pressured atmosphere and linked to these sentiments was often the guilt that accompanied many parents' thoughts that they had outlived their children. Our interviews saw the concept most candidly expressed in relation to parents who had little exposure to their son's involvement with the gay community: 

Bill

Their difficulty is that parents don't outlive children and I'll be the second son that will die so they're coping as well as they can, Mum and Dad and my two brothers and my sister. Obviously it's far more difficult for them because, for them, it's an alien situation whereas for me it's a lot more commonplace and I've been to many funerals and seen people and helped them through this current situation that I'm in, so it's no great shock for me. 

Tony

My mother is a great supportive person. I have never ever had any problem, from telling her that I was gay to HIV to finally this. She naturally is, I can tell, very upset and distraught. Because, I guess, as a parent always assuming that your children will outlive you and not vice-versa and the fact that she knows that I am in pain, that things aren't so good. 

Disclosure 

For those infected at a later age, there was a tendency to resist telling elderly parents for their own "protection". This resulted in a range of deception tactics when illnesses first appeared: 

Louis

My parents don't know that I'm positive - they're in their 70's. I asked doctors, etc. about who to tell and he said there's not a lot of benefit from it. For them knowing, they'll get stressed out and there's not a lot they can achieve. My sister knows. 

Do your parents know that you've been ill? 

Oh yeah, they know I've had pneumonia. And the thing was - as soon as they found out that I had Sarcoid - they already wrote that off as being AIDS and I was going to die anyway. All they were concerned about was that they got at least a mention in my will, which I thought - "Yep, my father, he is financially so miserable", and that was his main concern - that they were mentioned in my will, that they weren't left out. So the relationship like that with my father is more strained because of his approach all the way along.

Damian

No, I haven't told them yet but again, they live down in [country place] which is down near [place] and I want to go down. This is what I am terrified of, because if they find out before I tell them, it'll kill them. And, my brother's got Parkinson's disease, and my mother's just been diagnosed with cancer and she's got the most terrible osteoporosis. So, when I get better, I am going to go down for a night and just tell her. I may not even stay the night... 

Roger too is able to rationalise his inability to tell his own children and family about his latest lymphoma attack because of more urgent medical crises: 

Because they have a number of personal problems of their own... my mother she has bone problems, and she really can't be by herself. My eldest sister has a back problem which has been operated on. She can't do housework like she used to. So, her and mum have decided to sell both their places and move to another one where they'll be next to each other, together. To do that, Mum has to borrow fifty thousand dollars. Now, a seventy-eight year old pensioner lady who has difficulty doing...that's something that's come up for the family which has caused a very significant strain, within the family. And, on her. So I don't want to them to find out. They're the only ones I wouldn't tell in sort of, my generation. 

A younger man like Jacob has not experienced as many illnesses or long-term hospitalisation and thus has not been forced to confront disclosing his AIDS diagnosis to his family. Nevertheless, he still frets about the timing of such disclosure and tries to pre-empt their response:

Well that's another sort of a nightmare I guess. I actually haven't told them that I've got a problem. My mum knows that I've been in hospital. I was going to be going up [north] and had it in mind to sort of spill the beans then, so to speak. I think they would.. obviously they wouldn't be pleased. But I think they'd be reasonably level headed enough to, ok, if that's it, that's it, then let's get on with it, sort of thing. 

For Frank, a willingness to disclose has failed to narrow what he perceives as an enormous generational difference between he and his mother: 

My mother, who's 82, I made a decision about four years ago to call her every Sunday morning because I'd lived out of the country for about twelve years and I'd speak to her every three months or something. But I thought, 'Hey she's old, I'll make that commitment to her, just to let her know I'm in her life and appease her a bit' and that's ok. But I find it a bit of a chore because her attitude is that we've got very similar situations in our lives. She's coming to the end of her life and so am I. I really resent her making those analogies. I don't agree and I leave that conversation alone as much as I can. I don't think she really understands the whole significance, the context of my friends dying, the stress involved, a whole sort of culture, a generation gone, she hasn't a clue what that means but she never knew what gay meant to me, you know gay community, gay identity and all that. 

This search for honesty and integrity in family relationships was vital to a process of healing and restoring relationships in the valuable remaining time. For some participants, such a search necessitated a demanding standard of honesty but offered a more authentic relationship: 

Robert

The really difficult part this time was going to see my family. Because it was my expectation, that I was not going to recover, even when I started this drug therapy. And that this could be the last time I might see them and all that stuff. And I looked like garbage, it wasn't a good look. So I got someone to put me on a plane because I was still really weak and I was still on a walking stick. One of my sisters picked me up from the airport and she looked at me and she burst into tears. Which is never like, never an encouraging sign. But it is more honest and I appreciate it more than "Gee, you look well", which I actually got from some people and you just look at them and say 'I look like shit. You don't have to pretend that this is not going on'. 

Brett

Once again, because you're able to be honest with them and to share it, it's not such a daunting process. I mean it's like anyone who is terminally ill, I mean why should we be scared to say we have AIDS? I mean I'm no better off than anyone or worse off than anyone with cancer or multiple sclerosis or leukaemia or whatever. And, most of my family live elsewhere not in [Australian city], but phone once a week or once every few weeks and they know the progress. 

The roles of families in the lives of people living with AIDS is so central it virtually warrants another study paper⁷. Even here, where so many of the interviewees had experienced difficult relationships with their families of origin, most families played an increasingly vital role as the impact of illness took affect. 

Friendship 

Friendships have long been recognised as a critical factor in sustaining the health of PLWH/A (see Zich & Temoshok 1987; Grief & Porembski 1988 and Hays et al 1990). For our participants, these relationships became even more important as their health declined and reliance on care increased. Certainly many had delineated a close circle of friends during their asymptomatic years of living with HIV but an AIDS diagnosis further intensified the role of friendships. Gerry suffered from AIDS related illnesses immediately following his HIV diagnosis but was reasonably well at the time of interview. He speaks about his experiences: 

In terms of other things, relationships and friendships it seems to have helped. I suppose if anything I've gotten to know about my sexuality as well, I wasn't very comfortable about my whole lifestyle, I was living alone and didn't have any interests before I was diagnosed, but when I was diagnosed all of a sudden I've got friendships and I have a relationship, it has been a bit of a turn-around. 

Brian also talks about an HIV diagnosis as the dividing line for the future of particular friendships: 

Well, you soon find out once you let people know that you're HIV positive or a carrier of hepatitis, where their loyalties lie, or where your strengths of friendship lie. Um, so you don't really have to weed out the good friends from the bad friends, they weed themselves out with how they view things. 

Bill, on the other hand, died only a few weeks after his interview (the shortest period between interview and death of all the participants). His comments on friendship are salient: 

I think they've become more and more helpful and friends, the real friends, have really intensified that friendship and the assistance they give me just in chatting, laughing and physical assistance. Like this morning when {name} came around and cleaned up shit everywhere - that's a rare help and it's just the most comforting thing, you think "Well look, someone wants to do that!". 

Relationships with friends tended to follow a similar path to family relationships following the transition from HIV to AIDS. In other words, those whose friendships were strong prior to the transition invariably spoke of solid friendships as they coped with AIDS and vice versa. Louis' story is apposite here: 

I've only got a small group of friends, most of those know, but people that I used to work with outside of that don't know - so it hasn't changed anything with them. Within the group of friends, they're more supportive. I think to some extent they make the effort to see that I'm involved with the things that they're doing. A lot of the time when I was at work, I was working odd hours anyway, so if I wasn't available for something, that was fine. Now they make a point of letting me know what's happening, so that I can be involved with them. 

However, this did not preclude significant shifts in the way that many of these friendships operated, as both sides adjusted to dealing with illness. 

Patrick

Fundamentally people have stuck by me, which has been great, but they've all had to go through significant changes in terms of accommodating the practicals - when I've been in hospital and when I've been not well, and then not being able to function as I used to, they've had to accommodate in that way, just in terms of time and stuff, but it's a real split because when I'm feeling sick, it's not that I don't want people around, I do want them around, but I have not a lot of energy to give them and for me that's been a really painful process in trying to change them, feel comfortable about this new relationship, that no, I'm not [Patrick] that they used to know.  

Indeed, Patrick's fear about placing unfair demands on his friends was shared by many of the participants who had experienced long bouts of hospitalisation and/or feeling unwell. For some, this meant acknowledging the frustration from both perspectives: 

Frank

With my friends now.. we're just running out of friends and people we can count on. In fact, my support network at the moment is eighty percent women, who are fantastic but I try not to put demands on my friends. But at the moment, we're sort of eating each other up alive. You know like we can't step back and say "Maybe we're really stressed here!". We're just like "UGGHHH!!!" [scream which nearly deafened the transcriber] with the anger and the pain and all of that. 

Peter

With my friends, I've probably been a bit touchy towards them because I don't feel they understand. At all...you know I have a lot more straight friends than gay friends and the gay friends I do have are negative anyhow and I don't think they can truly comprehend what's happening to me in my mind and how I'm feeling and sometimes they're a bit callous when they say things, they just don't think. They walk too quickly, they won't slow down. And I need people to do that. I can't walk at the same pace I used to be able to. 

While for others like Neil and Paul, this required a recognition that lives had changed irrevocably: 

I do feel a little bit ostracised by my friends to the extent that I don't feel like I've got any, you know? Or the people who I thought were friends were probably more associates. But I think that's their defence mechanisms - they've helped nurse various people through 'til death and it sort of drags. I ring them occasionally if I'm in hospital and I say "Look just say here's my phone number". I don't want them to come and visit because they'll see me going down like everybody else. 

Paul

Most have either died or got their own concerns. I do keep in touch with nowhere near as much as I should, I think. But, you see I spend so much time in another place now, and some people react to a situation like this by, for instance, they take to the piss or they start running around whoring and all this sort of stuff. My pleasures are more cerebral these days. I seem to spend more periods alone in contemplation. 

The recognition that friendships have taken different paths is neatly articulated by Don: 

Illness strikes not at the right time and not between nine and five and it's been my experience that once I started getting sick then a couple of my friends also started getting employment opportunities which changed the availability that I'd had with them in the past. So they weren't available when I expected them to be, but there were other people that entered my life. OK, I have got a different relationship with them but at the same time it's still support. 

Rejecting and Accepting

 Like many other characteristics of the transition from HIV to AIDS, the whole notion of friendship may be questioned as PLWH/A consider how to utilise their remaining time. Daniel expresses his regrets that in this process, he rejected sincere friends: 

I began to question who were my friends and friendships saying "What is the quality of this friendship, why is this going along? Why is this person being so kind to me? And I'd just wish they'd fuck off". And I began dropping friends. There was a cleric and he [said] "Well you must admit that you haven't got years left". You know, I said "I don't need to hear this, go away!". But [to] people who had been incredibly kind, I left instructions for them to be told. You know, these people had been really kind. 

However, as identified already, PLWH/A may reach a stage where friends become not only critical to their ongoing health but essential to their ability to accept what friends can offer: 

Ian

I don't know whether a selection is the right word, but I have a small group of friends, who are very supportive and that's all I really feel that I need. I don't want twenty people crawling all over me, I am quite happy to have two or three good friends who come in, and when they come in you know that they are genuine. 

Some friends had deliberately sought to adjust their lifestyles to accommodate PLWA in the latter stages of their illness: 

Jeff

They keep an eye on me more. Keep in much closer contact. Not mainly just because I was sick but since I lost [lover's name] as well. They moved in closer around me I think, for support. They're lovely friends.. I'm very lucky I suppose. 

Although others found it difficult to contain their friends' desire to provide hands-on care: 

John

I've found that they have to look after me more like inviting me out for dinner to make sure I eat and I presume that they'd notice you know when I'm losing weight...more of a mothering type of thing. 

And Tony is angry about how his friends' overbearing attitude tends to patronise him:

I have other friends too that, for some reason, I mean I am treated with kid gloves. And I said to these people, "I am still conscious of things and I can see what you are doing, and I can feel what you're doing and I don't want you to do that. Don't treat me like an invalid, and like a different person. Because I am not a different person. Eventually, I may change but in me I am always the person that you have always known, and I want to be treated as such".

Survivor Guilt

 Not surprisingly, many Transitions participants had already suffered a great deal of loss of friendship through AIDS deaths, particularly gay men living in the heart of Sydney. Survivor guilt is a phenomenon identified across a number of disasters and fatal epidemics and has been particularly poignant in large urban gay communities worldwide⁸. Robert capably explains the sociological impact: 

I run this theory currently that HIV community and gay community members, particularly in Sydney, we are dysfunctional just like the nature of what has been going on for ten years, that the responses that we are having to losing our friends are not normal, that this has had a deep effect on our collective or our communal psyche. And so it would be nice to be well and to be in a community or to be somewhere that is a bit more optimistic about what is going on.  

Brett is not from Sydney but talks openly about his sense of loss: 

Most of my best friends are dead, which causes a very strange feeling within me because, on the odd occasion I actually feel guilty, which is very hard to explain... more and more people come up [and say] "How come you've gone on for so long? You look so well" and you think "Are they angry or what have I done that they haven't done?". 

There is also a deep sense of bereavement in Bruce's words: 

The sadness of it is that you know, we were a close knit group of friends, and basically about eighty percent of them have gone, have died. And it's very hard, even though your family's there, you know like, if I ring up now and had a dinner party, I'd be lucky to get three people here. Whereas five six years ago there'd be seven or eight. And that's the sad thing because you know you can't get on the phone and have a giggle and talk about your life. 

Other participants were very aware of the difficulties of negotiating friendships amidst such uncertainty. For Marcus and David, there is a distinct reluctance to form friendships for fear of what they might lose:  

It has been strange in some ways, I suppose I am scared to form new friendships because I don't think that I am much of a viable proposition for people. In [HOME CITY], I guess I knew a lot of people there and I was very superficial and I thought that "These are just the people that are around me at the moment, there's no point in me forming any endearing friendships or long term sort of thing here". 

David

I think these friends, they're just continuing on with their lives and there are so many things that will happen. I have some very good friends [including] a young family - they have a young baby and I know that I just won't be part of their future. They're part of my life now, and I'm very much part of their life, but I do think about things like that. 

 

Relationships with Health Care Providers 

The nature of AIDS dictates that illnesses will require regular interactions with health care providers. However, the complexity of AIDS also affects the type and incidence of contact with the medical profession. Neither does the patient-service provider relationship exist in a vacuum - the importance of the relationship is defined primarily by the beliefs, values and life experiences both bring to their relationship. Given this assumption, it was to be expected that our second hypothesis in relation to this issue would be confirmed. To a large extent for the Transitions participants, coping with AIDS did evoke a complex mix of emotions with respect to health care providers. 

Nevertheless, it is interesting to note the central role that doctors play for the Transitions participants, particularly when AIDS symptoms emerge: 

Patrick

Often it's doctors that'll say that "your stage is Category 4", whatever, whatever, but it really does bring it home to you... it's a bit different to being someone who's positive, I think. 

For Patrick, it is critical that the doctor-patient relationship acknowledges the need for the patient to retain a sense of control, particularly when one is feeling increasingly less control over their own health management:

I think I want a doctor who'll care - that's what I want - now I don't know whether that's reasonable any more or not, but I actually want someone who really cares in a sense, that may or may not be appropriate for a doctor/patient sort of relationship I don't know but that's what I want. I want accessibility, I want quick service, I want to be able to see them the day that I feel shithouse - that's not usually the case, they're busy. 

David also is very clear about where his doctor fits in the management of his health: 

I was a little bit worried at the start about how efficient this particular man was - but I've sort of resolved those worries. I don't think he is the most efficient of doctors but he has done everything he can and because he is one of a team now, as opposed to the person, the specialist who is in charge of me, that's OK, and he's also an extremely caring man, and that also makes up for a hell of a lot as well. 

Many of the participant's comments with respect to the relationship with their doctor bear witness to the notion of patient empowerment. Though this is a characteristic long encouraged by promoters of the new public health and now well noted amongst the political movement of people living with HIV/AIDS, there has been very little distinction made by both advocates and service providers between asymptomatic and symptomatic PLWH/A. Our interviews provide some clear evidence that PLWA are determined to retain their sense of empowerment despite the physical burdens and limitations. Don reflects these sentiments: 

[B]ecause until you are actually faced with um, an AIDS defining illness everything else is relatively ok to cope with and sort of so long as it's explained to you and I find that this is my life, I'm in control of it and so whatever the doctors are wanting to do, I want to know what they're doing. 

and Gary expands further: 

Generally, if there's a query, I will ask, or challenge them on that. For example, they started talking about the MAC [Mycobacterium avium complex] treatment after the fourth attack, and yet they didn't take it to the start of the trial until after the ninth. And I said, "Why not - why not try it - I'll try anything". 

Understandably, many participants sought ongoing assurance from doctors about their health amidst coping with such a turbulent disease as AIDS. For some, this necessitated finding a doctor prepared to offer definitive statements: 

Ian

Well the doctor I have got, I was only saying to [Hospice Dr] yesterday or the day before when I was talking to her that [Ian's GP] is a very direct person, a spade is a spade, no pussyfooting around with him - a spade can't be a half a diamond and half a heart, you know. And I like that, I like that. 

Brett

...and I ask the doctor a lot of questions and if they say "I don't know" and I don't know then I give them my opinion. 

Anger 

Sometimes the medical profession's failure to fulfill the patient's desire to keep being properly informed generated a great degree of anger: 

Frank

I think '91 I had my first bout of shingles. And, that was pretty sobering, so I embraced the medical profession um..I had a GP, HIV specialist and I went to a clinic at [name], and I tried AZT and it made me feel sick, so I stopped, and that started off a real sort of battle with the doctors because they almost.. I got the feeling that they just lost interest me if I wasn't prepared to take the drugs they were giving me, so I gave them attitude and said "Fuck you!". 

Neil

Ah..but I'm forgotten by the medical people. "So I haven't developed cancer", I said to them the other day, "I'm terribly sorry I haven't developed cancer". You know? I just feel I'm forgotten by them, you know? I mean when I asked, I had to really get that on bended knees, to find out what my t-cell count was this last time. 

Marcus

..the doctor I had in Perth, like I ended up having quite a anger reaction to him. 'Cause he was the one that gave me the KS diagnosis and was treating me while I had the myopathy and the sciatica and I don't think his level of knowledge... really what I would have liked him to have said to me was 'I don't know what is going on with you [Marcus], there are lots of things happening, maybe it could be something to do with HIV. It seems like things are falling apart for you physically'. But instead he was saying things like 'Oh, this isn't anything that serious'. 

Many participants spoke not only about their uncertainty as to what it meant to get an AIDS-defining illness, but they spoke about this illness experience in the context of their doctors not being able to provide them with an understanding as to what was going on. 

Robert

I was really delirious and really sick, and he [the doctor] had this very annoying habit of walking into the room and standing at the end of the bed and just going 'Tsk, tsk, tsk, shocking, shocking' and leaving again, which doesn't really instil confidence. They had no idea, and to this day they still have no idea of what the underlying infection was. It became a game of 'Let's just try the different therapies for the major opportunistic infections as they stood at that point in time'. 

Tony

They are constantly telling us that there is no reason to be in pain these days as there are drugs and stuff. Well it is not really so true, because we are in pain, and sometimes that pain is hard to define for doctors and so forth. Some doctors are more in tune with you and what is going on. We are not medical people, we find it sometimes hard to explain where the pain is, or what kind of pain there is. Over in the AIDS ward, where I have been for instance, I find some of the younger doctors not so in tune with the patients that are there. Some of the professors, the specialists are so very, very clever but aren't so clever in their explanations to patients as to what's wrong. 

Diagnostic Uncertainties 

Patrick and Louis also express the frustration and stresses that can be a part of the diagnostic process:

You go to the doctor and you say "I've got this, this and this", and they say "Right, yeah, ok, well clearly it'll be HIV related", and you think, "Yes, and big deal, I know that", and often you're left with no answers and you then have a choice of, "Well, you could try this, you could try that, no guarantee, may help, may not", and I think that frustration, that limbo, of not having the answers, is driving me mad. Sometimes I feel I'm just going crazy with it - and so I get to this point where I can't make a decision, it feels just too hard, and I want someone to come in and say "[Patrick], I'm taking over, and this is what you have to do", and then I'll do it. 

Louis

I was still getting over coming out of pneumonia - I was confined to bed, hooked up on intravenous drips, all of that carry-on, so when they told me, I felt very much as though the doctor was getting at me sort of thing. He'd done all these tests for so long, and they'd come back negative.. I think that part of that was anger and resentment that they hadn't come up with a true diagnosis earlier, and the new doctor that I was being treated by. I had the hates for about 3 or 4 days. 

Another participant described his regular intense fevers that, although they could not be diagnosed by specialist doctors, were predictable and were able to be managed by this man and his carers. The fevers were uncommon and were not on any list of AIDS defining illnesses, so the participant was learning to accept that they would continue to occur but were unable to be diagnosed. 

Gary

They can't [diagnose], and the stupid part about it is - technically - I've got a T-cell count of 60 at last count. My P24 antigen tests are coming back positive, I've had MRI which indicated that - I mean they've done all those tests, done the CAT scan and the MRI, and the MRI indicated that I'm toxo-positive as well. And he'd asked whether I'd had an AIDS-defining illness. 

Oh really, because they can't find a name for this sweating thing? 

Yeah, and its technically not an AIDS-defining illness, they've never come across it before.

Despite the fact that Gary technically did not have AIDS, he died shortly after the interview. 

One participant had seven HIV tests that were all negative, but discovered that he had PCP. This ended a long period of confusion where standard HIV tests were inadequate to diagnose the presence of HIV in his body. Through the two year period of being treated for cancer, a connection was finally made with HIV. Louis discusses the reluctance of the treating doctor to fully develop this uncertain scenario: 

..he never educated me as to any connection with HIV, because I now believe that it's quite common that 99% of the people with sarcoid that have died and in those today that are white, it's HIV-related or AIDS-related. He made no point of that to me, and I use the term 'educated' because I believe that was his responsibility to tell me what the connection was. I'm not a medical person to draw the connection. 

Conversely, another participant describes the significance of being diagnosed with an AIDS-defining illness by a specialist:

 Marcus

I went to see the specialist, the neurologist, and he said to me "You have got neuropathy and myopathy" and I knew that he was the absolute number one specialist in the whole world, this is [name] who is a neurologist, and I had been told already that "Whatever [name] tells you, you can bet your bottom dollar that it is an accurate diagnosis". So more or less, when he said the words to me that: "You have got neuropathy and myopathy", I thought "This is it. I am symptomatic". 

Indeed, the presence of a specialist or more generally, a specialist care team was a vital factor for many of the participants. 

Mick

I went over to Dr X as a Fairfield [specialist infectious diseases hospital in Melbourne] visiting doctor so I had him as my hospital doctor and my GP which was a great advantage. He understood my case you know ..regardless and uh that's not the case for a lot of people and I think that duplication causes a lot of problems.

Bill

...the crew at Wattlebrae [specialist infectious diseases hospital ward in Brisbane], they had registrars coming through, so there have been several registrars that I just got on super well with and they've been so, you know, caring, they've followed everything up and it's a close relationship. Person to person. Yeah, the specialists up there are great but obviously they're flat out busy. 

Brian

Well, over the last four years I've spent the majority of that time in prison... once a month, a doctor from Fairfield would attend to mainly check up on each and every HIV positive person and to clear up any problems they may have or any queries they have about their treatment. When you're talking to the medical people that work at Pentridge you feel that they are working for the system. When a Fairfield doctor came over you thought that he was independent from that and he was there wholly and solely for your well being and for your health, so that was good. 

For Jacob and Kim, frustrations have arisen from their hospital experiences and particularly their perceptions of a lack of consultation time:

Jacob

Certainly I asked them questions and I guess one of the problems I find is that they, doctors themselves, never have time to sit down and talk to you. About things. You know they're just too busy. You know you can't catch [Drs name 1] or [Drs name 2] or that. You just can't sit down and have a chin wag with them for half an hour or something. 

Kim

I get really pissed off with the doctors here. I think you know, tell me what's happening. Just explain to me what, you know, what is actually wrong with me. I asked doctor {name} what's happening with me and they just come in and sort of, "Hi, how are you going?" and I say "Good good, fine" and, that's it, really. No sort of real in-depth stuff. 

Others who had experienced a long period of living well with HIV and a more gradual onset of AIDS-related symptoms tended to be more pragmatic and philosophical in their understanding of the doctor-patient relationship. 

Paul

If you take into account that they [doctors] are learning as they go and that can be a terrifically frustrating thing for them.. umm, I think that it has been pretty good. I think that there have been a few that have gone by the wayside here in Sydney, but that doesn't matter, they can go back to general practice and not be overly concerned about HIV. I don't think their technical expertise was questionable at all, it is simply that they have got an exceptional load of terminal cases, potentially terminal people constantly sitting in their waiting room with no let up in sight. It is a dreadful drain, and the ones that survive tend not to be in for terribly long, kind of after a few years there is a new face. Where one time you would have a doctor for life.... 

Stewart

I've found the healing or the treatment by doctor is a co-operative effort, you've got to want to be helped and co-operate as much as they want to do it to you, you know. 

For virtually all the Transitions participants, each of these friendships and relationships altered significantly from living asymptomatically to coping with illness. To understand more about the rich tapestry of emotions accompanying AIDS, we turn now to more individual responses to coping with AIDS from day to day. 

Endnotes

6. For more on this topic see Rabkin, J.G.; Remein, R.; Katoff, L. & Williams, J.B.W. (1993) 'Suicidality in AIDS Long-term Survivors: What is the Evidence?', AIDS Care, 5:4, 401-411. 

7. For further research in this area, see Atkins & Amenta 1991; Brown & Powell-Cope 1991.

8. Arguably the most prominent contribution to the AIDS literature in this area is Walt Odets (1995) In The Shadows of the Epidemic: Being HIV-Negative in the Age of AIDS, Durham: Duke University Press.