Study Paper No. 5 PART IIDISCOVERING MEANING and SELF-UNDERSTANDING of AIDSWe have seen then that AIDS elicits a tangled web of responses, all of which are again indelibly shaped by their surrounding social context. Many of these responses are immediate and transitory, dependent on the nature of the relationship at the moment of interaction whether it be with a health care provider, a family member or the experience of pain itself. While each of these responses can collectively amount to a greater sense of how PWA construct a personal sense of meaning and understanding, they still leave questions unanswered. How does one make sense of having AIDS in between the times when an external force triggers some form of response? When pain or a difficult relationship is not present, how does one conceptualise AIDS? In essence, how does one live with AIDS? CONSTRUCTING MEANING AIDS may be a useful term in understanding the social construction of the disease. It has significant cultural and metaphorical baggage attached to it. In relation to stigma we can only understand this by looking at the way AIDS is understood. However, in relation to illness and sickness, how far does the veracity of the term persist? Strong claims can be made that common understandings of what we know about HIV/AIDS are generally shaped by scientific/medical knowledge. Given that HIV/AIDS is a relatively new phenomenon, and that it has such devastating consequences, a great emphasis is placed on this knowledge as the key to understanding the epidemic and its personal and social costs. Scientific and medical knowledge are seen as being the arbiters of reality through their technologies - tests, treatments, etc - but this reality is a constantly shifting one. The lay patient then, who is experiencing AIDS-related illness, seeks a sense of what is "real" in relation to their health, illnesses and prognosis. The inability of the scientific community, as represented in this instance largely by the GP or HIV specialist, to give certainty in relation to major health questions causes a range of dilemmas. In a culture that is accustomed to receiving answers from doctors, the inability of science to provide patients with answers is central to respondents' sense of uncertainty. Other sources of knowledge were explored by the Transitions participants, eg natural therapies and unorthodox medical treatments, because this occurs in a community where a constant variety of knowledges are available through communities informing themselves. The range of knowledges available to people with AIDS amounts to a range of theories, as distinct from truths, as to what a particular illness or its treatment means. Individuals then construct personal theories or beliefs based on personal summations of this range of knowledge. These personal constructs are often precarious. The research conducted in the Transitions study was an attempt to focus on the individual construction of meaning around illness. As such, meaning generated before symptoms will be relevant in terms of changes that occur during and after illness9. The question here is how are asymptomatic meanings about disease and the predicament of being HIV positive sustained or changed in the face of illness? SPIRITUALITY One of the traditional sources of meanings about disease has been religion and the research team were eager to investigate the degree to which spiritual interest affected the way in which participants constructed meanings of living with AIDS. It is clear from many of the quotes already that the transition from HIV to AIDS evokes a range of thoughts associated with confronting issues around death. The research team sought to understand how participants placed their thoughts about spirituality in the context of approaching the final stages of their lives. All participants were asked about their religious beliefs and while most reflected the general Australian trend of little involvement with organised religious institutions, very few expressed absolutely no interest like Patrick:
In fact, only four (4) of the participants expressed no religious/spiritual beliefs and practice. More common were the experiences of Louis:
and Paul:
In a similar vein, others expressed a wariness in their approach to religious matters. Bruce
Brett
The Impact of AIDS While there exists a general assumption about a gradual increase in interest and awareness of spiritual dimensions in the lives of PLWH/A, the impact of an AIDS diagnosis may suddenly illuminate these issues. For Stewart:
whereas Daniel's initial AIDS diagnosis had an entirely different effect:
Re-Entering Faith Some participants found that religious or spiritual faith had re-entered their social world through directly confronting an approaching death, whether it be their own or that of someone else. Tony (living in an AIDS hospice):
Mick
Family Faith Participant's family involvement in religion was very common and many spoke with reference to their parents, or siblings beliefs. John
Con
and Anthony
The Non-Aligned Others were content with their own personal faith not cluttered with demoninational idiosyncrasies: Damian:
Don:
and Marcus:
Exploring Alternatives Certainly, the experience of living with HIV/AIDS had forced many participants to already address the spiritual aspects of their lives10. In some cases, this involved eschewing a traditional western religion for a more personal spiritual discipline. Julian:
For Barry, this process was an intensely personal exercise involving a highly conscious move from the religious to the spiritual:
Brian too has put his personal stamp on the sort of religion he wishes to identify with:
Determinism For some participants, spirituality was deliberately compartmentalised as one tool in a coping strategy kit. This tended to take two different forms. Robert expresses a pragmatism about his spirituality that was typical of those very active and prominent as PLWA:
On the other hand, Paul has deliberately limited his activities to allow for more spiritual input which has had a profound impact:
It is perhaps not surprising that the profound experience of living and dying with AIDS fosters a climate of contemplating non-material issues. Certainly, the willingness of participants to speak so candidly about spiritual matters is strong evidence of the importance it plays in developing their capacity to cope with AIDS. In conclusion, it should be noted that Australia's relatively high levels of religious freedom allow a diversity of experiences to be nourished without oppressive intervention from religious and/or state institutions. UNDERSTANDING OF THE FUTURE Many of the responses in this study to the question How do you see your future? can be read as participants striving for a sense of meaning and personal security. In the face of such powerful odds - the uncertainties present in our biomedical understanding of AIDS; the uncertainties prompted by loss of job, loss of independence, loss of control over health and bodily functions; the uncertainties inherent in changing personal relationships and diminishing sexual desire and sexual attractiveness that accompany illness; plus the challenges to sense of self prompted by identification with a stigmatised illness - the ability to find meaning and describe a range of possible futures is remarkable. Sense of Future It is the variety of responses to the notion of sense of future that reflect the variety of possibilities people with AIDS-related illness see as available. Uncertainties The uncertainties evoked by the cyclical nature of AIDS as a medical disease is reflected in Barry, John and Robert's respective responses to how they saw their future. Barry
John
Robert
Denial For some, the abiding sense of uncertainty has bred a conscious process of denial, an effective coping strategy for Jacob and Marcus: Jacob
Marcus
Others base their capacity to cope with the future by focussing on the present, perhaps a form of denial but more pragmatically a response to lingering unanswered questions: David
Gary
Timelines/Desire Lines A question about the future is likely to elicit a range of views about how one assesses both their prospective survival time and the use of their time within this period. Certainly, there were participants who simply expressed relief and even gratitude that they had been able to live as long as they had. Ian and Gerry speak of this in direct comparison to PLWA with a greater number of symptoms: Ian
Gerry
More common, however, was the determination of so many to "make the most" of the time remaining. Daryl's comments were typical in this regard:
Other men resolved to spend their immediate future being busily active: Lindsay
Damien
Roger
The Strategists Some of the participants had thought very strategically about their estimated length of time available. For Mick, this involved talking to peers:
Neil has concentrated on reaching a certain age:
Whereas Brian eschews the notion of life expectancy:
For Jeff, the whole notion of planning is problematic:
The Philosophical Another set of responses to this question about the future involved a more philosophical, analytical assessment of what living and then dying with AIDS might entail. Participants in this group were more inclined to reflect in greater depth about contemplating a necessarily limited future. Indeed, the question invoked memories for Patrick:
Paul, a much older gay man than Patrick, is able to link lessons learned from the past with what could be offered in the future:
Daniel regularly describes his transition from HIV to AIDS as a process and in contrast to the bulk of the responses to this question, answers in terms of feelings rather than strategies and plans:
However, for Louis, it is the very fact that he can see stability and order amongst the uncertainty of AIDS that sustains his sense of future:
Present versus Future Tony and Con are also contrasting examples of how PLWA reflect on their sense of mortality, in part illustrating the enormous variability in one's perception of a sense of future according to their current state of health. At the time of interview, Tony was extremely unwell whereas Con had long recovered from his first AIDS defining illness: Tony
Con
As we might expect, most of those closer to approaching death had already resolved feelings about their limited futures. Bill died only a couple of weeks after the interview was completed:
Nevertheless, the pain that accompanies such a process of acceptance should not be underestimated. Kim is also resigned to her fate, wryly saying "Doomed!" in initial response to the question but follows up the matter:
These comments were most noticeably different to those PLWAs who had been asymptomatic for several years after experiencing an AIDS-defining illness in the first few years of the epidemic. Charles, for instance, identifies as a PLWA rather than HIV and yet has been living well for nearly a decade. His comments bear witness the salience of the empowerment model amongst PLWH/A activist groups:
Of course, improved treatment prospects emerging during 1996 and 1997 mean that hope is now based on a more solid foundation. What effect this might have on PLWH/A's sense of future is still unclear. For the meantime, it has re-energised PLWH/A's sense of the present. But as we have seen through the words of the participants above, these perceptions are constantly being culturally constructed and reconstructed. Researching the illness experience of people with AIDS means entering a complex maze of personal, institutional and culturally generated understandings, where knowledge about the disease and the experience is manufactured. COPING WITH UNCERTAINTY AIDS is not one illness. It is the medical shorthand for a range of diseases and conditions resulting from the damage inflicted on the immune system by the Human Immuno-deficiency virus. Information regarding how long a person can remain well once they become HIV positive ranges from below 10 to above 20 years. How an individual experiences HIV related diseases and conditions will depend on some known factors (social, political and physical) and many more that are unknown. The complexity of illness states that arise because of AIDS presents some problems for researchers. Indeed this issue is hardly touched on in the literature. We cannot fit people neatly into a category assuming that because they have AIDS we can rely on a least one constant among all the variables. The organisation of medical care around people with AIDS influences this picture considerably. Generating medical consensus about such things as the proper course of treatment (or even the illness or disease causing the sickness), the likely prognosis and the eventuality of death is a complicated process. That serious illness usually involves some measure of uncertainty then is not really in doubt. The uncertainty involved in forecasting and treating AIDS related illness, however, moves beyond that for most other diseases and is a feature from diagnosis to death. Uncertainty Even in this broader sense, such a conceptualisation of uncertainty still stems from a biomedical response to AIDS, framed as it is around the fluctuations of the patient's physical wellness and is another example of the powerful influence of biomedicine on the social construction of AIDS. The Transitions study sought to place notions of uncertainty within a broader framework beyond medical/scientific constructions of disease by deliberately asking participants what issues gave them a sense of uncertainty. The existence of uncertainty in the lives of people with chronic illness, and specifically people with HIV/AIDS, has been identified as central to the illness experience (Brown and Powell-Cope 1991, Weitz 1989, Mishel 1990, Mishel & Braden 1987). Mishel develops a theory of uncertainty in illness as part of a discussion of the cultural context in which uncertainty exists:
Mishel describes how these unmet expectations biomedical knowledge effect individuals - that individuals find their sense of control over their situation and direction in life jeopardised. She argues for adaption as the desired end stage of uncertainty, which encompasses a capacity to change at different transitional stages. Weitz (1989) describes the different conditions that give rise to uncertainty in the lives of people with AIDS, based on a study of 23 people with HIV/AIDS. These include uncertainty about the meaning and treatment of symptoms, uncertainty as to how an individual will feel each day, uncertainty about living with dignity as illness progresses, uncertainty about whether AIDS will kill them, and on acceptance of death as a probable outcome, whether they will be able to die with dignity. Weitz argues that people with AIDS face greater levels of uncertainty than other seriously ill persons, but that participants in her study were developing ways of coping with it in their daily lives. Sandstrom's notion of "liminal status" - that people with AIDS occupy a symbolic relationship with a disease of difference and transgression - gives rise to what he calls "ambiguity". It is argued here that this ambiguity is another description for a particular type of uncertainty, and is responded to in a characteristic different way. Many people interviewed in this study had extensive experiences of watching others die of AIDS and developed "certainties" for themselves based on these experiences. These "certainties" are often precarious and sometimes reflect desired possibilities rather than possibilities measured by other means, for example, scientific calculations. These scenarios, coupled with the relative young age of participants in Transitions, provide the point at which participants in this study differ from other illness groups, particularly older people. In response to the broad range of uncertainties in Transitions participants' lives - uncertainty in relation to medical knowledge, enormous changes in bodily integrity, changes in social role from well person to invalid - a wide variety of styles of coping with this change and uncertainty were evident. These included not making plans very far into the future ("I've learnt to take one day at a time"), recognising the changes that are occurring and responding to each as it occurs ("I'm in a paddock and the fences are shifting"), coping with the likelihood of death in the near future ("I know my time is limited") and focussing on internal, personal processes. These different methods of responding to change and uncertainty can be read as the formation of tentative "certainties" in order to create workable, meaningful frameworks. One participant describes this process in relation to his relationship with his doctor: Paul
Another participant describes the personal transformation that occurred that prepares him for further illness: Don
And another participant describes how he copes with the certainty of his death: Barry
The uncertainties present in the lives of people interviewed for the Transitions study are often reflected in other studies mentioned. But other uncertainties exist for people with AIDS that are responded to in unique ways. Given advances in treatments for AIDS, there remains a possibility that not everybody will die of AIDS. Indeed, there remain many long term survivors of HIV and AIDS who defy biomedical estimations and conclusions. Endnotes 9. For more theoretical work in this area, see Gerhard Schussler (1992) "Coping Strategies and Individual Meanings of Illness", Social Science and Medicine, 34:4, 427-432 and Doris D. Coward (1994) "Meaning and Purpose in the Lives of Persons with AIDS", Public Health Nursing, 11:5, 331-336. 10. For more studies in this area, see Carson 1993 and Kendall 1994.
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