Chapter One: Introduction

One of our most difficult duties as human beings is to listen to the voices of those who suffer. (Frank 1995:25)
Narrative constitutes a mode of understanding appropriate for situations too variable and too untidy for laboratory analysis. (Morris 1998: 89)

In this thesis I seek to give voice to the lived experience of twenty individuals with hepatitis C in Auckland, New Zealand. These individuals, and others like them, are much more than their disease and this disease is more than a medical problem. Socially hepatitis C impacts upon individuals lives in a multiplicity of dimensions, an impact under-acknowledged by the medical disease model. Stigma, low social supports and the work imperative of a neo-liberally informed society can create a situation where marginalisation, isolation and/or secrecy are commonplace. In this thesis I prioritise the voice of my participants’ through the frequent use of direct quotation. While this has lengthened the work, it is valuable: humanising the illness and providing a richness of experience that my words alone could not convey. These participants were sourced from the Narcotics Anonymous fellowship and through the Auckland Hepatitis C resource centre. I found a striking disparity in the way individuals’ from the two groups interviewed and in order to articulate this difference I used Arthur Frank’s narrative theory of restitution, chaos and quest.

Frank (1995) and Morris (1998) use the term ‘postmodern illness’ referring to the rise of chronic illness in the post World War Two period. Postmodern illness also describes the intersection of biology and culture, in that it encompasses both the patients experience and the biological condition that initiates or accompanies it (Morris 1998:40). My rendering of hepatitis C as more than just a medical condition places it within this context. Typical of postmodernity, hepatitis C is a disease characterised by uncertainty: of symptoms, outcome, treatment efficacy and illness trajectory. Although biomedicine still retains authority, the postmodern era has heralded the rise of personal illness narratives, and implicit in these is the knowledge that there is more to the illness experience than medicine currently can describe. However, in this thesis hepatitis C could be more appropriately positioned as a neo-liberal illness. Its discovery in 1989 places it within the era of neo-liberal restructuring within New Zealand. The virus is framed within the liberal ethos of personal responsibility and those affected are encouraged to narrativise it in these terms.

Within this chapter I will firstly present the official discourse on hepatitis C: its aetiology, demographic and economic impact within New Zealand. Then I introduce my impetus for this thesis, how its focus has changed, my chosen methodology, themes, theoretical influences and a chapter overview. A primary theoretical influence is that of the illness narrative (Frank 1995, Kleinman 1988, Broyard 1992), stemming from the sociology of chronic illness. Illness narratives are, simply, the story the ill person tells – recounting the impact that illness has on their lives1. While this may seem self evident, narratives of illness are muted in a neo-liberally informed society where the primacy of work and of stoically ‘coping’ discourages talk of vulnerability, uncertainty and bodily contingency. Being ill renders one vulnerable: subject to the medical discourse of disease which in its authority defines the ‘truth’ of the body, as opposed to the experiential and social needs of the individual: articulated through the discourse of illness (Kleinman 1988, Morris 1998, Lupton 2003). It is to the experiential discourse of illness that this thesis will attend.

As well as containing a narrative impetus this thesis is arranged thematically. Particular themes recurred consistently throughout the interview process and to each of these a chapter is devoted. The chapters are entitled: the day-to-day, relationships, isolation and support, the medical encounter and treatment. While dividing material into themes may seem to erode a narrative impetus, by doing this a wider and more accessible story emerges. This is a story which illustrates how hepatitis C affects a diverse range of people and impacts on areas of life seldom attended to by the medical model. Experiential knowledge receives scant acknowledgement within the medical system: it is viewed as subjective, therefore untrustworthy. However untrustworthy, subjective knowledge is the focus of this thesis: it deals primarily with lived experience via individuals own accounts. I see this as valuable, for it has allowed individuals who occupy a marginal position in society to voice their experience and have it heard and recognised, at least by a few.
Hepatitis C
Official discourse, medical or governmental, is one of reductionism (Mansfield 1998). It focuses on the facts and figures surrounding a disease rather than its experiential impact. However, as public knowledge about the disease is scant, it is important that these facts and figures are outlined – they are a necessary background. Hepatitis C is a blood-borne virus, identified in 1989, that primarily affects intravenous drug users and people who were given blood products or transfusions in New Zealand before 1992. World-wide about 3% of the population, or 170 million people, are estimated to be infected with hepatitis C (Crofts 2001)2. At a conservative estimate 1% or 35 - 40,000 people in New Zealand have hepatitis C3 (NZ Hepatitis C Resource Centre 2003) yet it is a disease which receives very little media or policy attention. A primary reason for this may be that hepatitis C affects a marginalised population and is not perceived as relevant to mainstream society. Within the general population the prevalence of hepatitis C is low, as intravenous drug users account for around 80% of those infected (Ministry of Health 2002). However, prior to 1992 when screening was belatedly implemented in New Zealand many individuals received the virus through blood product or transfusions, including approximately 85 - 90% of haemophiliacs (NZ Haemophilia Foundation 2004).

Hepatitis C is, primarily, a chronic illness. Unlike other forms of hepatitis approximately 80% of those who contract it go on to develop chronic infection, with only a small percentage clearing the virus in its acute phase. Symptoms, addressed at greater length in chapter three, include fatigue, depression and nausea. Although various treatments are utilized these are debilitating and have a limited success rate. No vaccine is currently available. The New Zealand Government has begun to recognise the serious nature of this epidemic, with a Ministry of Health Discussion Document on Hepatitis C released in April 2002. The nature of this document is one of neo-liberal risk mitigation. It focuses on harm minimisation and preventative action to curb the spread of the virus, with young intravenous drug users a primary target. Hepatitis C is primarily posed as an economic problem; one of an exponential cost to the public health system and hence the taxpayer’s pocket4. The effect on people living with the disease is framed in terms of lost productivity5, addressing liberal market concerns rather than experiential and social issues. Policies promoting harm minimisation of hepatitis C were well in place prior to 2002; regional needle exchanges play a primary role in education and promotion of safe injecting practice. While this focus on preventative action is important, equally so, yet overlooked has been research into issues effecting New Zealanders living with the virus.
Thesis impetus
My impetus for this research topic was primarily of a personal nature. I have had hepatitis C since 1998, contracting the virus through intravenous drug use. At the time of the diagnosis I was heavily addicted to opiates and paid it little head; my life already contained enough chaos as it was. After many attempts at ceasing drug use I completed a six month rehabilitation program in 2000, and in 2001 returned to my long abandoned University studies. With the cessation of drug use the diagnosis of hepatitis C attained a significance that it had previously lacked. While within the drug using community hepatitis C was the norm, I found in the ‘real world’ it acquired the air of a shameful secret. Medical specialists urged me to undertake interferon therapy but were unable to answer my questions regarding depression, anaemia or relapse. With these issues in mind I was fearful of treatment, particularly the uncertainty of outcome and potential side effects. Frustrated with a lack of public acknowledgement or information available, I sought to talk to others with the disease to see how they coped with these and other issues.
Methodology
In March 2004 I gained approval from the University of Auckland Human Participants Ethics Committee to interview twenty individuals regarding their experiences of living with hepatitis C. This approval did not come easily. Problems raised involved the committee’s (mistaken) belief that hepatitis C was a sexually transmitted disease and the possible admission by participants of criminal acts (such as drug use). It was posed to me that in the circumstances of a participant disclosing unprotected sex or drug use, I would have an obligation to pass this information on to the “appropriate authorities, e.g. the police”6. The situation was ironic: it was such displays of ignorance which had in part, motivated my research. After sending the ethics committee ‘proof’ that hepatitis C was not a sexually transmitted disease, and assuring that no direct questions would be asked pertaining to sexual proclivities or drug use7, the study was finally approved.

Participants were recruited through the dispersal of participant information sheets (Appendix 1) to members of Narcotics Anonymous (NA) and through the posting of a letter outlining my research proposal in the Hepatitis C Resource Centre’s Newsletter The Chronicle. I also gave an information sheet directly to one woman who was associated with neither group. Many individuals interested in participating in the study contacted me. Once the cut-off point of twenty was reached I had to turn down expressions of interest, which was hard to do but necessary, considering time constraints. I was not surprised at this interest. Due to stigma, and a general lack of knowledge in society about hepatitis C, people with the disease generally keep it to themselves and therefore were very keen to talk to someone who was receptive and genuinely interested.

Of the twenty participants eight were members of NA, eleven came through the Hepatitis C Resource Centre, and one was affiliated with neither group. Participants were aged from 25 to 64 and had lived with the disease from two years to approximately 35 years. The method of transmission was primarily through intravenous drug use with four participants having acquired the virus through other means8. Eleven of the participants were women and nine men9. I had aimed for a gender balance as initially I was interested in exploring if there were gender differences in how individuals coped with this illness. However, unlike other research which did find differential gender responses, this was not evident among my participants10. My research is not representative, due to its small sample size as well as the ethnic makeup of the participants. All but two of the participants are Pakeha New Zealanders (one European Australian, one Chilean). This is unfortunate, but as no other ethnicities expressed an interest in being involved, there was little I could do to remedy the situation, given a limited time-frame. Apart from the issue of ethnicity I feel that the twenty interviews I conducted were more than enough. While I did not interview to the point of redundancy, I had a wealth of material and in a thematic sense redundancy had been reached.

Interviews lasted from one to two hours. These were generally free of incident apart from various problems with tape recorders which resulted in the loss of several interviews. Luckily I was able to re-interview these participants, and from then on I took two recorders to each session. Interviews were held in a place of the participants’ choosing, which was usually their own home. Before each interview, I went over an outline of the study and answered any questions the participant had. A consent form was given (Appendix 2) for the participant to read and sign, in which permission was asked to tape-record the interview, and an assurance of confidentiality given. The interviews were structured around central themes, with leading questions and additional probes noted (Appendix 3).
Theory
The central theoretical perspective utilised in this thesis is Arthur Frank’s theory of three narrative types or ‘listening devices’: those of restitution, chaos and quest. These are outlined on page 9. Frank’s theory as well as other writing on narrative (Kleinman 1988, Brody 2003, Broyard 1992) helped me to understand and articulate the differences found in my participants’ attitudes to illness and their modes of expression. This interest in narrative was fore-grounded by the theories that informed my methodology and before I address narrative, it is to these theories that I wish to turn.

My methodological approach was influenced by the principles of grounded theory, feminist theory and interpretive interactionism. These theories utilise a qualitative inductive approach which emphasises the importance of reciprocity in the interview process and the use of open ended questions to allow the participant to tell their ‘story’ (Charmaz 1997, 2000, Denzin 2000, Glaser and Strauss 1967, Oakley 1981, Stern 1995, Tolich and Davidson 1999). A grounded theoretical approach eschews the need for a prior hypothesis; here the conceptual framework is generated from the data, and analysis begins and continues throughout the study (Glaser and Strauss 1967, Stern 1995, Charmaz 1997, 2000). This approach fosters following new leads and issues: it is an “iterative and reflexive process” (Tolich and Davidson 1999:108) whereby each interview builds on the other, generating better questions. Hence, my methodological framework involved conducting interviews and being guided by this material in research formulation. Therefore the thesis was not bound to a definitive research question or outcome, but attempts to give voice to the research participants and elucidate repeated concerns and themes expressed throughout the interviews.

Interpretive interactionism (Denzin 2001) and feminist theory (Oakley 1981) both view the ideal interview process as reciprocal. Stressed is the importance of establishing a human relationship with the respondent; seeking to understand rather than explain. To this end I was open about my status as an individual with hepatitis C, and found this approach to be beneficial. Participants frequently asked questions about my experiences with the virus, and appeared to be more open and trusting than they may have been with a non-infected academic researcher. In analysing and incorporating the interviews into my writing I placed emphasis on the lived experience of the participants through the frequent use of direct quotation. I feel this to be important as these are voices often silenced within mainstream media and academic research. Faithful to its broad epistemological and methodological approach, this thesis provides an interpretive rendering of the interview material. I acknowledge that any such rendering is situated within a particular point of view (Charmaz 1997) and acknowledge my positionality as a Pakeha woman from a middle class background who is also an ex-intravenous drug user with hepatitis C.
How my theoretical orientation emerged
Aware of incidences of hepatitis C related discrimination, both through the literature11 and personal experience, my research project initially began its life with the working title of ‘Discrimination and Disclosure: Individuals’ Experiences of Living with Hepatitis C’. Hence a primary theoretical interest has been that of stigma (Goffman 1963). Using the principles of grounded theory I aimed to approach the interview process with no prior hypothesis in mind; however, aware of discrimination, I expected that this might form a large part of my thesis. While stigma and discrimination did surface as pertinent to participants’ experience, what I found more interesting was the discrepancy in the way the different groups of participants interviewed. This divergence arose through the use of a semi-structured interview format in which participants were able to talk as long as they wished. I noticed that on the whole, participants who were members of NA exhibited lower levels of distress and were more concise and restrained in their answers, while participants sourced through the Hepatitis C Resource Centre were often voluble and emotional. This disparity led me to look at the role support groups played in the participants’ lives and the way narrative functioned in articulations of distress. Evident was a distinct need for support, articulated primarily by individuals who were not members of NA. Thus, my reading focus moved from works on hepatitis C, stigma and discrimination, to that of chronic illness and narrative theory; in particular that of Frank’s three narrative types: restitution, quest and chaos.
Restitution, Quest and Chaos
Frank’s restitution narrative is socially accepted and normalised; it fits well within a neo-liberal and medical environment. It is a narrative which, like Parson’s sick role, positions the ill person as being able, post-intervention, to return to the labour force. The medical system is the heroic interventionist; the restitution narrative is the story of sickness, medical treatment and recovery. This narrative is one of happy endings: it posits that all can be returned to normal, and that ‘normal’ is a good place to be. It is the narrative of smiling television advertisements which proclaim to banish pain, impotence or an unsightly body with the latest pharmaceutical. The rendering of certain bodily and psychological states as unacceptable places an impetus on the afflicted person to fix themselves: to seek intervention, be cured or be quiet. However, the restitution narrative, like the ‘perfect’ body, is over-hyped and not available to all. Medical treatment is not always affordable or obtainable, and for some it simply does not work. For individuals with a chronic illness the restitution narrative can be a cruel irony: medical treatment is often futile, full participation in the labour force impossible and ‘normality’ out of reach.

Within this thesis I refer to hepatitis C as a chronic illness, although a treatment (interferon and ribaviron) is available. While the mention of treatment might indicate the possibility of restitution, the treatment program is long, debilitating and with limited efficacy. If the virus does clear there is a possibility of relapse, much like remission from cancer. Cancer was the illness that Frank experienced and on which he based his theories. He called the chronically ill, and those people that were effectively well but could never be considered cured, members of the remission society - a demilitarized zone in-between well and sick (Frank 1995:8). People with hepatitis C belong to this demilitarised zone: if treated they may relapse (and/or suffer the after effects of treatment) and if not treated they face an uncertain disease trajectory and scant recognition of their illness. It was difficult to find an example of the restitution narrative among my participants interview material, which indicates its redundancy for people with hepatitis C. However, the closest to a narrative of restitution was that of Richard. As he is a GP this is somewhat not surprising. This excerpt is in the context of Richard proposing that I should consider interferon treatment:
[Geno]type three is cured very, there is a 99% cure with the old gumboot stuff for six months. And honestly it didn’t get really bad with the depressive type stuff, ‘cos the mood stuff is the worse, and it didn’t really kick in until about four and a half months into it, you know if you are only doing it for another six weeks then you are just about out of the woods.

Frank’s second narrative type is that of chaos. While the restitution narrative comforts in its possibilities of a happy ending, the chaos narrative threatens: it displays an indiscriminate whirlpool of unsolvable problems, into which anyone may be sucked. The irony of the chaos narrative is that when the chaos is truly being lived it cannot be articulated. The chaos narrative may be seen as an anti-narrative; it indicates troubles so deep they cannot be fully verbalized. Thus, the chaos narrative is hard to hear; it expresses pain and lacks coherence, temporality or narrative order. This passage from Lucy is an example of a chaos narrative; it is fractured, both in content and form:
And I can’t go home, it is just getting harder and harder, and my health it is just a blow-out, how can I put that in words when I am there, and the lawyer said to me, and I said I am complete, I am content, I can drink every night and it doesn’t affect me, and I know if I was drinking every night here I’d be fucked. And I know that is me being content, I am happy, healthy mother, healthy child … there is no way I could go out here and have two drinks every night.
While lives lacking coherence and control are common for those marginalized by the restitution narrative, society does not want to know. 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.

Frank’s final narrative type is that of the quest. The quest narrative is that of illness as a journey: a voyage of self-discovery where illness is accepted and used. The quest narrative is common in published illness accounts; it offers the teller their most distinctive voice. While the hero of the restitution narrative is medicine and the chaos narrative is fractured and hard to hear, the quest narrative looks for a meaning in illness and is thus, a more palatable and positive telling. I believe, however, that it is important not to valorise the quest narrative. It is akin to the restitution narrative in a way in that it is comfortable for others to hear and is not obtainable for all. Lucy in expressing how hepatitis C has made her a “better person” iterates a narrative of quest:
Back then when I was using if you had told me I could have got a disease it wouldn’t have mattered, I still would have done it, I had no self respect, and today I have learnt, how can I, I have become a better person because of it, a sick person, but better person. I’ve learnt so much about myself because of this. (Lucy)
In using the same participant to illustrate both the quest and chaos narratives I wish to show that these narratives are not exclusionary; they can all exist in one person’s story, with different narratives dominating on different occasions. However, in a situation characterised by stigma, lack of support and structural constraints, the narrative that predominates for many with hepatitis C is that of chaos, rather than the socially affirmed restitution or quest.
Narrative theory
Narrative theory has been important to this thesis for it has helped to explicate the different modes of expression my participants used. I found that participants’ utilisation of different illness narratives generally correlated with the levels of support and isolation in their lives. Those with poor social supports conveyed a greater sense of distress and could be seen to be operating within a ‘chaos narrative’. Conversely those with greater social supports were pragmatic about their illness and utilised either a ‘quest’ or ‘restitution narrative’ (Frank 1995). In seeking to emphasise the lived experience of my participants I found that the theoretical positions proposed by proponents of narrative were most amenable to this task. Brody (2003), Frank (1995), Kleinman (1988) and Broyard (1992) each emphasise and articulate the importance of narrative, particularly in relation to the experience of illness. Narrative is seen as a powerful tool: it has the ability to transform, not only the perception of the listener, but also the teller’s subjectivity. Frank writes that “illness calls for stories” and that stories are a “dual reaffirmation”: they enhance the relationship with others and with the self (1995:54). By presenting my participants’ narratives of illness I hope readers may make a connection with these experiences and view hepatitis C in a wider light than that of official discourse.

By presenting a wider picture, illness stories can act as a form of resistance to the dominant narratives of society, especially those of work, health and medical supremacy. Illness narratives foreground the experiential knowledge of the individual. In doing so, they unsettle the ‘truth’ of medical dominance and provide a point of reference to other ill people. Many of my participants expressed frustration with the medical system, often feeling as if they were viewed as a ‘liver’ with scant attention given to their social, emotional or experiential condition. This reductionism has repercussions; not only for the individual but for the medical system itself. Silence about the social aspects of hepatitis C leads to incidences of stigma, discrimination and isolation as well as reduced medical attendance and treatment compliance. Many of the people I talked to with hepatitis C felt alone and isolated in their experience. Lorde states that: “imposed silence about any area of our lives is a tool for separation and powerlessness” (1980:9). I feel that the attention to, and use of narrative in this thesis is a small step towards breaking through some of the silence that surrounds hepatitis C in this country. If nothing else, the twenty individuals who shared their story were appreciative of being heard, recognised and engaged in dialogue, and for some this was the first time they felt able to talk openly about living with hepatitis C.

The interview process was one of dialogue. Taylor and Frank believe that dialogue and recognition are crucial facets of the human experience (Taylor 1992, Frank 1995). Frank expresses the importance of dialogue through the deployment of monadic and dyadic body types (Frank 1995), which will be referred to within the body of the thesis. The monadic body, in understanding itself as essentially separate and alone (Frank 1995:36), is that of society’s misplaced monological ideal (Taylor 1992:33); whereas the dyadic body is dialogical and relational. The dyadic body is the body of story telling, which recognises the importance of recognition for the construction of identity:
… our identity is partly shaped by recognition or its absence, often by the misrecognition of others, and so a person or group of people can suffer real damage, real distortion, if the people or society around them mirror back to them a confining or demeaning or contemptible picture of themselves. Non-recognition or misrecognition can inflict harm; can be a form of oppression, imprisoning someone in a false, distorted and reduced mode of being. (Taylor 1992:25)
Desire for recognition drives the creation of narrative, but if this narrative finds no listeners or only antagonistic ones it will wither and die. The experience of non-recognition / misunderstanding / discrimination is common for people living with a stigmatised illness such as hepatitis C. Thus, if they are able, many choose to ‘pass’ (Goffman 1963) for in hiding their disease they circumvent potential negative reaction. In passing, an individual must silence their narrative of illness and this, as Taylor says, can inflict harm: it is a form of oppression where the individual - not ‘good enough’ in their reality, must construct a false front to gain approbation.
Neo-liberalism
Society has its own narratives of well-being, pathology and normality. Presently the dominant narrative in New Zealand is that of neo-liberalism, encompassing liberal subjectivity. The ideal liberal subject is autonomous, in control and engaged in an upwardly mobile career. Many of those who do not fit this model of subjectivity construct false fronts in order to survive, or get ahead. Feelings of vulnerability, failure or fear are seldom expressed, for to do so would render oneself liable to scrutiny and denigration. In the “market-orientated and capital-centric” neo-liberal environment (Peck 2004) illness, uncertainty or pain are temporary inconveniences to be born if not stoically, then silently - out of sight. For those who live with these conditions on a more permanent basis, the options are limited. Central to the rationale of neo-liberal policy, and the reformatory technology to which it is linked, is the imperative of activity (Rose 1999:268). This imperative presupposes an ethic of choice where individuals are to be entrepreneurial, self-activating citizens, engaging in the market place mechanics of consumption and production:
[T]he political subject is now less a social citizen with powers and obligations deriving from membership of a collective body, than an individual whose citizenship is to be manifested through the free exercise of personal choice among a variety of marketed options. (Rose 1999:226)
The ‘free exercise of personal choice’, is an anathema for the chronically ill and structurally disadvantaged. It has been described as a form of Social Darwinism (Hoggett 2000:163), where decreased social spending and the freeing of the market will result in the ‘survival of the fittest’.

New Zealand’s political trajectory has moved from that of ‘progressive’ or ‘roll back’ neo-liberalism of the 1980s through to the Third Way inspired ‘inclusive’ or ‘roll out’ neo-liberalism of the late 1990s to the present day (Tickell and Peck 2003). ‘Inclusive’ liberalism (Porter and Craig 2004) seeks to rescue the marginal, albeit casualties of previous ‘roll back’ market reform, by inserting them into the workforce. Catch cries of the ‘inclusive’ moment are those of ‘partnerships’ and ‘community’. The appeal to communities results from a decentralisation of governance, and naturalises and de-politicises the increased role charities and voluntary organisations have come to play in providing for beneficiaries, the chronically ill and other marginalised groups. ‘Inclusion’ is generally predicated on fulfilling requirements to enter the labour market and for people with hepatitis C this is not always possible. Many individuals with hepatitis C are on the sickness or invalids benefits, benefits which have become increasingly scrutinised in the current political climate. Reduced social expenditure has impacted on the health care supports available, and community groups such as the Hepatitis C Resource Centre struggle with limited funding, recognition or Government support. The notion of ‘the community’ presupposes an amalgam of caring people and organisations that will band together to support the poor and dispossessed. In reality this is seldom the case.
Stigma
Like liberalism and liberal subjectivity, stigma as a theme runs through this thesis; it is pertinent to the experience of every participant. Goffman, in his seminal work on the subject, defines stigma as an “attribute that is deeply discrediting” (1963:13). He distinguishes between those who are discredited (possessing an overt difference) and the discreditable (an unperceivable difference). These can fall under three types of stigma: physical deformities, blemishes of character and ‘tribal’ stigma of race, nation and religion. Hepatitis C as a largely invisible disease falls into the realm of the discreditable, and in its association with intravenous drug use is often perceived as conveying a ‘blemish of character’. As such, individuals with hepatitis C are faced with a situation of ‘information management’ (Goffman 1963) in which decisions relating to disclosure are vital. Stigma can be said to spring from the definitional workings of society rather than the inherent qualities of the attribute or behaviour itself (Devine et al 1999). For example, the criminalization of intravenous drug use follows no rational logic when compared with the harms of legal substances such as alcohol or tobacco. It is important to remember therefore, that stigma is not an essentially defining characteristic but a perspective springing from cultural fears and norms.

Stigma experienced by people with hepatitis C results from the perception that the virus is a ‘junkie’s disease’ and from a general lack of public information. The conflation of hepatitis C with intravenous drug use creates a situation where individuals are often reticent about disclosing their hepatitis C status, which severely limits the support options open to them. Intravenous drug users occupy a position as one of the most marginalised and reviled sectors of society, and hepatitis C, as a disease primarily associated with this population seems to be equally marginalised and misunderstood. Various diseases throughout history have elicited their share of stigma, for example tuberculosis, cancer and most recently HIV/AIDS. While HIV/AIDS carries stigma, this has been ameliorated in some part due to an increase in public awareness and recognition that the virus impacts upon the whole of society, not just the homosexual population. This shift in awareness has been aided by lobbying from the gay community and legislation such as the 1986 Homosexual Law Reform Bill. Intravenous drug users in comparison are a criminalised and disparate population, unlikely to organise and lobby against discrimination or for awareness of hepatitis C.

A lack of public awareness about hepatitis C enhances its stigmatised status. In comparison to the regular media coverage seen around conditions such as diabetes, cancer and obesity, hepatitis C is virtually absent in the newspapers or other media outlets. As a result confusion exists as to the nature of the disease and its degree of contagion. If one is not engaged in direct blood-to-blood contact in a medical or injecting situation, hepatitis C is very difficult to catch. Despite this participants reported incidents such as their relatives bringing their own cups when visiting them, laying out a special set of cutlery and refusing to hug or kiss them. These experiences are distressing, especially when the individual already feels a degree of shame about their disease. As a result, the most common descriptor used by participants was that of feeling like a ‘leper’ in their interactions with others who knew that they had hepatitis C.
Biographical disruption
At the intersection of disease, narrative, stigma and liberalism sits biographical disruption. Conceived by Bury in 1982 this concept is influential in the field of chronic illness (Williams 1996, 2000, Wilkerson 2003, Faircloth et al 2004). Bury posits that the diagnosis and symptoms of chronic illness create a radical disruption to the recipient’s life. This theory has been utilised in regards to hepatitis C (Krug 1995, Glaken 2001). However, from my research it appears that the concept of biographical disruption is contextual, in that participants who had already experienced significant life threatening events incorporated the diagnosis of hepatitis C into their identity more readily than those with stable lives. This was particularly evident in the narratives of individuals who identified a past of intravenous drug use. For marginalised individuals whose lives are already disrupted by poverty and stigma, a diagnosis of hepatitis C seems to be a congruent, even expected part of their lives. The contextual nature of biographical disruption is important, as it helps clarify why current intravenous drug users often do not prioritise hepatitis C12.
Thesis Overview
This thesis seeks to elucidate the concerns and issues that were dominant in the participants’ narratives. Five major themes arose from the interviews and chapters three to eight each concentrate on one of these themes. Chapter Two encompasses a literature review where I expand upon my influences and place this research in the context of international and national literature on hepatitis C and illness experience. Chapter Three focuses on the day-to-day experiences of living with hepatitis C, in particular: the symptoms and stigma experienced, the meaning that hepatitis C has for different groups of participants, and the contextual nature of biographical disruption. Employment, poverty and lack of social supports are also addressed which relate to the neo-liberal primacy of work and personal responsibility.

Chapter Four focuses on relationships: intimate sexual relationships and general relationships between friends, family and acquaintances. Hepatitis C, due to its ambiguous and stigmatised nature, can be seen to place considerable stress on a multiplicity of relationships. Predominant issues for participants were: disclosure, fear of rejection, desire for support, and worries about sexual transmission. Evident in participants’ narratives were expressions of estrangement relating to the feeling that others did not understand or want to hear about the effects of their illness. Disclosure was a major issue, for many participants had experienced prior incidents of discrimination and negativity when telling of their illness. Hence a strategic mode of disclosure was commonly adopted, which entailed a degree of ‘sussing out’ the recipient’s likely reaction before any revelation was made. Some participants were extremely reticent in disclosure while others were completely open. These approaches had their pitfalls - the first severely limited options for support while the latter provided opportunity for multiple incidences of discrimination and rejection. A felt societal preference for narratives of restitution, recovery and coping often led participants to minimise or hide the reality of their illness.

Chapter Five is based on participants’ experiences of isolation and support. One major finding of this research was that there is a distinct lack of social supports available for individuals with hepatitis C in New Zealand. Lack of social support has, as affirmed by the World Health Organisation, a detrimental effect on individuals physical and mental wellbeing. As Frank says: “isolation is the beginning of incoherence” (Frank 1991:31) and for individuals in this study who received little support theirs was more likely to be a narrative of chaos. I found striking in this study the difference in the demeanour between the participants from NA and those recruited through the Hepatitis C Resource Centre. In this chapter I look at reasons for this difference, including the role of support groups. An overview is given of the NA fellowship and the Hepatitis Resource Centre as well as possible reasons for the failure of hepatitis C-based peer support and the place spirituality has in participants’ lives. Knowledge and information, while at times contradictory and confusing, also provided a sense of support for participants against the vicissitudes of hepatitis C.

Chapter Six focuses on the medical encounter. The tone of this chapter is distinct from the others: it is more straight-laced and descriptive and lacks the narrative analysis that weaves through the other chapters. This style is chosen because it mirrors that of the traditional medical encounter itself. The chapter focuses on the participants’ accounts of their interactions with medical professionals, many of which were distressing and/or unsatisfactory. Participants consistently articulated a desire for information regarding the maintenance of their health and a frustration with the inability of the medical profession to provide this information. Consequently they looked elsewhere for guidance; implementing practices such as dietary changes into their lives. An unacceptably high proportion of individuals received their hepatitis C diagnosis over the phone and incidences of discriminatory behaviour by medical professionals were commonplace. I propose in this chapter that the biomedical model is flawed in its attitude towards chronic illness. Necessary and overlooked is a focus on helping patients to manage their illness, or as Frank terms it, how to “live a good life while being ill” (Frank 1995:.156).

Chapter Seven addresses the issue of treatment and the complexities and dilemmas that are involved in deciding whether to undertake combination interferon therapy. This is a fraught decision for many as this standard medical treatment has limited efficacy and often debilitating side effects. Of the twenty participants in this study the majority had been offered interferon and ribaviron treatment. Nine took up this offer with three clearing the virus. The decision to go on interferon treatment is regulated by contextual factors, such as workplace and family situation, availability of support and issues regarding disclosure, and for ex-addicts the fear of relapse. Alternative and complementary and alternative medicine (CAM) such as Chinese medicine, homeopathy and naturopathy were utilised by approximately half of the participants. These therapies are useful in alleviating symptoms and possibly slowing disease progression. Economics is an issue in the uptake of both alternative and conventional therapies. Some participants reported foregoing basic necessities in order to access CAM, while others felt pressured by medical staff to adhere to interferon treatment because of its cost to the governments’ coffers. Finally, Chapter Eight concludes the thesis and provides recommendations for further research.