Chapter Eight: Conclusion

Within this thesis I attend to the experiential voice of illness rather than the medical discourse of disease. This is important, for although hepatitis C is a medical condition, it affects many areas of life unattended to by the medical story. These include those of the day-to-day: employment, child-raising, poverty and intimate and general relationships. Individuals with hepatitis C are regularly faced with dilemma and uncertainty, particularly in relation to disclosure, possible rejection, future commitments, bodily contingency and treatment options. In order for the experience of individuals with the virus to improve I feel that hepatitis C needs an increased visibility within this country. At present the virus is characterised by silence, stigma, misinformation and discrimination, leading to a situation in which individuals have poor social supports and are reticent in disclosure. While public ignorance can be explained by a lack of accessible information, discrimination and ignorance within the medical profession is inexcusable and serves to drive those away from care who need it.

Such discrimination may be ameliorated with an increased recognition of the diversity of individuals with the disease. People with hepatitis C are not a homogenous group. They are more diverse and disparate than this thesis has been able to do justice. This research does not attempt to be representative; it is an exploratory study into the experiences and issues that affect twenty individuals. The time frame of this project (eleven months) meant that a limited number of people could be interviewed. Yet the wealth of material gathered during those interviews was immense. While a quantitative study could have covered a greater and more disparate number of individuals it would not have rendered such a richness of data and emotional expression. This wealth of data, along with the contrasting way the participants interviewed, brought me to my primary theoretical orientation – the work of Arthur Frank and his narratives of restitution, chaos and quest.
Narrative, stigma and biographical disruption.
Restitution, the dominant and socially acceptable narrative, was rarely found in the tales of my participants. The redundancy of this narrative for the chronically ill meant that, following Franks thematic, the narratives that were predominately utilised by my participants were those of chaos and quest. These narratives are not exclusionary: both were present in most interviews. However, quest occupies a more socially acceptable format and those participants who belonged to the Narcotics Anonymous fellowship were cognisant with its articulation. Common, particularly amongst ex-addicts, was a life of chaos looked back upon and framed in a narrative of quest. For those, however, who lacked such support frameworks, chaos was often ongoing, and this was the narrative that predominated. Chaos is uncomfortable for a society primed to the restitution narrative and the ideal of autonomous liberal subjectivity. The primacy of work and the negation of ongoing sickness meant that many participants chose to silence their narrative of illness in order to gain societal approbation.

The creation of narrative helps define the self and its relation to the experience and meaning of illness. Illness narratives foreground the experiential knowledge of the patient. In doing so, they unsettle the ‘truth’ of medical dominance and provide a point of reference to other ill people. When restitution is found to be redundant and the frameworks for a quest narrative are absent often all that remains is chaos. Within a neo-liberal context a chaotic life is seen to be the fault of the individual, requiring personal not structural change. However, as can be seen in this thesis, structural deficiencies can cause chaos: poverty, lack of adequate support structures, and a discriminatory medical system all add to individuals’ feelings of not being able to cope, of being subsumed by their disease.

For intravenous drug users a diagnosis of hepatitis C may be just one more aspect of a chaotic life, and faced by more immediate concerns, they do not often accord it priority. However, for individuals whose lives were more coherent with the ideal of liberal subjectivity, the diagnosis of hepatitis C came as a radical shock, precipitating biographical disruption. This disruption was often caused more by stigma than bodily contingency: a solution often enacted was one of silence. While stigma was an issue for all participants it appeared to be bound up in a larger framework - one in which the meaning of illness was related to the amount of social supports available and how open individuals were about their illness. Issues of stigma, narrative, support, liberal subjectivity, biographical disruption and disclosure are all intertwined. A neo-liberal environment places a premium upon personal responsibility; hepatitis C is framed within these terms. As a disease that is juxtaposed with intravenous drug use, it is seen as avoidable, a result of careless or depraved behaviour. Therefore, social supports are not prioritised; just as individuals are held responsible for contracting the disease so they are held equally responsible for coping with the consequences. The liberal individual is not socialised to ask for help and in New Zealand’s restructured environment there are scant resources to provide it.
Thesis aims, limitations and further research
Within this thesis I sought to give a voice to the illness narratives of individuals who are often marginalised by society. Secondary aims included recognition of my past as an intravenous drug user, and information gathering from a personal perspective as someone who has hepatitis C. I feel that these goals were accomplished - and more. During the research process two articles about my research and hepatitis C were published in local newspapers1. This publicity was minimal but is a small step towards enhancing public awareness of hepatitis C as an important health and social issue. The response from participants also showed that the interview process itself was of reciprocal value. Many of the individuals I spoke to had not previously had the opportunity to talk openly about their illness and expressed immense gratitude at the outlet that this process gave them. I was also able to pass on information in response to questions about the nature of the virus. A tangible result of this study was the linking together of two compatible participants, Elisabeth and Miranda. Elisabeth was isolated with her illness, having talked to virtually no-one. Being able to connect her with a peer who had the disease was one of the gifts of this research process.

This connection illustrates in miniature what I believe needs to happen with hepatitis C in New Zealand. Individuals with the disease are a disparate group, often isolated from one-another. A system for individuals to come together would provide a much needed format for the sharing of information, advice and support. I believe that the ideal of the autonomous liberal subject is a fallacy. As humans we are interdependent, dyadic rather than monadic bodies. Peer support is a valuable avenue for recognition, companionship and information, as can be seen through the more cohesive narratives of participants who were involved in an active support network. Medical and institutional support is lacking in this country, and even if it existed, this alone is not enough. Participants frequently spoke of the inability of the medical system to provide them with information on ways of managing the disease. What is needed is an acknowledgement of the veracity of the desire to live a good life while being ill, instead of a fixation on often unrealistic ‘cures’. Help with day-to-day issues could be provided by the medical system as well as governmental social services, but for the meantime it seems as if the most realistic place to begin is with the implementation of peer support networks.

This is beginning to happen in Auckland with an interferon support group initiated by the Hepatitis C Resource Centre. This signals the start of a much needed volunteer network of people who have survived treatment and are willing to support those currently undergoing it2. Research is needed in New Zealand in the area of social supports and interferon treatment. The beginning of the Auckland interferon support group provides a valuable opportunity to observe the effect of social support on the interferon experience and associated compliance rates. Also of interest will be whether the group sustains itself or is discontinued due to problems that have plagued the longevity of other hepatitis C peer support groups. Utilisation of CAM in relation to hepatitis C, both alone and in combination with interferon therapy, is also an area for further research. If found to be beneficial physicians may be encouraged to incorporate CAM into their recommendations, which would increase the likelihood of governmental subsidies. Related to this issue is the need for physicians to accord a greater recognition to the importance of contextual issues for individuals about to undertake interferon therapy. The risk of relapse is one case in point, as active addiction is invariably a more immediately life threatening situation than that of hepatitis C alone.

My research was limited by the small number of people interviewed. While for my purposes twenty interviews were more than adequate, it meant that various perspectives, lifestyles and geographical locations were not accessed. Of benefit to New Zealand would be a large scale research project which covered both rural and urban areas, to assess the needs and concerns of people living with hepatitis C in this country. This may be best accomplished by a triangulation approach: the use of a large scale quantitative survey as well as in-depth qualitative interviews with selections of representative participants. Such a study would be helpful in assessing the adequacy of the medical system in reaching affected individuals and whether particular social supports are needed to improve both individuals’ treatment compliance, and their experience of living with the illness.

Arising from this study is my proposed PhD project which aims to further utilise these interviews and conduct a comparative analysis with twenty individuals living with the disease in Sydney. Due to a greater public and political awareness in Australia of hepatitis C as a significant social problem, I am interested to see if this equates with an improved provision of social services. If this is so, and these services have a beneficial impact, New Zealand may be able to learn from Australia’s experience and implement similar supports. On a theoretical level I would like to further utilise Frank’s narrative theory and the concept of biographical disruption, especially in relation to a fuller range of people with hepatitis C; in particular those neglected by this research: current intravenous drug users and haemophiliacs. Issues that I did not have the space to attend to within this thesis involved interactions with the social welfare system and difficulties some participants had with limiting their alcohol intake. These would be given space and attention within a PhD project.

As social research involving hepatitis C in New Zealand is such an under-developed area any additional research on this subject would be beneficial. Of particular benefit would be further qualitative research into discrimination within the medical system and the impact this has on individuals’ utilisation of medical care. Of interest in such research would be the perspectives of health care providers, something which I am also hoping to incorporate into my PhD study. Also crucial is further research into hepatitis C symptomatology; with findings disseminated widely, particularly to medical professionals and those living with the disease. Research on how to raise public awareness of the disease (in a non-stigmatising fashion) would be valuable for those living with the illness. With an increased public awareness and understanding, incidences of discrimination and misunderstanding are likely to reduce. People with hepatitis C may feel more able to disclose their condition, thus opening up possibilities for receiving support.
Conclusion
One of the most powerful ways to reduce stigma is to humanise/personalise the disease. This can be done through the use of personal illness narratives. In allowing the voice of the ill person to surface the reader can see that this individual is not an ‘other’ but one who shares their common human experience – that of fear, doubt, love and the desire for human recognition. This is in part what I have tried to do in this thesis. While this work will not reach a wide audience, I hope it provides those who do read it with an increased understanding of the disease and of the human dilemmas that face all of those who live with it. As I said in Chapter One individuals with hepatitis C are much more than their disease, and their illness is more than a medical condition. Neo-liberalism emphasises personal over structural change. However, we as a society must look beyond notions of individual responsibility to work on affecting structural changes, including increased social supports and a different way of viewing chronic illness. This includes recognition of the chaos narrative as a valid part of the life story.