“My hepatitis C is like chess, I will learn to play it one day”

“My hepatitis C is like chess, I will learn to play it one day”: Biographical disruption and chronic illness

Magdalena Harris 2008

Introduction

In this paper I will explore the diagnosis meaning-making process of 40 research participants living with chronic hepatitis C in New Zealand and Australia. Not surprisingly, the majority of social research which addresses hepatitis C diagnosis finds it to be a distressing or disruptive occurrence. However, participant responses from my recent qualitative study were almost evenly divided between those who experienced diagnosis as distressing and those who reported being unconcerned. Due to a focus in the literature on diagnosis as disruptive, both in regards to hepatitis C and chronic illness more generally, this paper will focus on the experiences of the 21 participants who described their reaction to diagnosis as of “no big deal” or to be “expected”.

It is important to note, however, that these reactions pertain only to participants’ recollections of finding out that they had hepatitis C. The paper will also include references to experiences of living with the virus to illustrate how reactions to health and illness are shifting and contextual, and how for many of these participants their meaning-making processes around hepatitis C changed significantly over time.

Firstly, I will provide an outline of the research study method, some brief information on the hepatitis C virus and then move on to address the factors that can help to understand participants’ reaction to and meaning-making around diagnosis.

Method

This paper draws on a qualitative study of the experiences of 40 people living with hepatitis C: 20 residing in Auckland, New Zealand and 20 in Sydney, Australia. Participants were recruited through the Sydney and Auckland Hepatitis C Councils, the Sydney and Auckland Narcotics Anonymous fellowships and Hep C Australasia, a peer support website forum. Semi-structured interviews lasting from one to two hours were conducted with participants in Auckland in 2004 and in Sydney in 2006. Interviews were analysed with attention to individual narrative structure as well as thematic commonalities and differences. The research study recruited 22 women and 18 men with an age range of 25 to 63. Participants were diagnosed with hepatitis C from 1989 to 2006, with half of the participants stating that they had lived with the virus for over 20 years.

Hepatitis C background

Hepatitis C is a highly prevalent blood borne virus. Approximately 170 million persons worldwide have been exposed to hepatitis C and amongst those approximately 75% will progress to a chronic infection. In industrialised countries hepatitis C is largely confined to people who have, at some stage in their life, injected illicit drugs and thus it is a highly stigmatised disease. Another, much smaller, group of those infected are people who received blood transfusions or blood products before the onset of blood screening in the early1990s. In Australia and New Zealand where this study was conducted, approximately one percent of the population live with chronic hepatitis C.

From unconcern to distress: diagnosis meaning making

In looking at the literature, the majority of qualitative studies addressing hepatitis C diagnosis report that their study participants found diagnosis to be distressing. Reactions include feeling ‘shocked’, ‘devastated’, ‘unclean’ and ‘contaminated’, with the word ‘leper’ a frequent descriptor. Diagnosis with hepatitis C has been described in the literature as a transition, a break in the structure of individuals’ lives, or a “biographical disruption”. However, people with hepatitis C are not a homogenous group. As this paper will illustrate contextual, embodied and intersubjective factors result in individuals reacting to diagnosis with differing degrees of distress and disruption.

Of the forty participants in this study, nineteen described being either “devastated”, “shocked” or “scared” when diagnosed. Conversely, 21 participants described the diagnosis of hepatitis C as “no big deal”, “a minor detail” or to be “expected”. What is interesting about these reactions is that the participants who were devastated upon diagnosis had either ceased injecting drugs, were in transition from drug use (in a drug rehabilitation or detoxification centre), or had never injected illicit drugs. However, the majority of the participants who described hepatitis C diagnosis as “no big deal” were currently injecting. This is not to say that people who inject drugs do not care about their health. In order to resist that easy assumption, and shed light on these attitudes of unconcern to diagnosis I will utilise the theoretical frameworks of biographical disruption, ‘normalisation’ and ‘dys-appearance’.

Biographical disruption

The concept of biographical disruption was developed by sociologist Michael Bury in 1982. Bury posits that the diagnosis and symptoms of chronic illness create a radical disruption to the individuals life, causing them to rethink their circumstances and eventually mobilise resources in response to this disruption. This theory has been utilised in regards to hepatitis C with the suggestion that diagnosis is a disruptive event which precipitates a transition in individuals’ lives. However, the varied nature of participants’ responses towards their hepatitis C diagnosis indicates that biographical disruption is contextual: shaped by embodied experiences, competing priorities, and the extent to which hepatitis C is an unknown entity or ‘normalised’ within an individual’s community.

Normalisation

The term normalisation has social activist origins in the disability sector. It has, however, been used by social scientists Woznaik et al. (2007) to refer not to the de-stigmatisation of people living with hepatitis C within the wider, non-affected, population, but to the acceptance of the virus within the population most affected; those who regularly inject illicit drugs. Whilst the narratives of the Sydney and Auckland research participants reinforce a concept of hepatitis C normalisation, other factors need to be taken into account, such as: how long ago diagnosis took place, the amount of information available, and the attitude of the diagnosing physician, to fully appreciate participants’ reactions. To understand why a diagnosis of hepatitis C may be de-prioritised it is also important to take into account structural constraints faced by participants as well as their potential familiarity with the experience of bodily dys-appearance.

Dys-appearance

Dys-appearance is a term used by philosopher Drew Leder (1990) to express the way the body demands attention, or comes to awareness, in times of pain, illness and dysfunction. He contrasts this kind of awareness with the everyday experience of the body which, when all is functioning as it should, “moves off to the side” or is absent from attention. Leder describes the body’s manifestation in pain or illness as a dys-appearance; it appears as a focus, but in a dys state; the Greek prefix dys signifying “bad”, “hard” or “ill”. In circumstances of pain, illness or dysfunction the body can be experienced as out of control and foreign to the self. The body may also be brought to awareness through the stigmatising or objectifying gaze of another person, which Leder refers to as social dys-appearance.

Diagnosis experience

I will now move on to explore participants’ experiences of diagnosis. The majority of the 21 participants who described diagnosis as “no big deal” were not only using illicit drugs at the time of diagnosis but tended to have been diagnosed significantly earlier than participants who were “devastated”. Diagnosis for the less concerned group ranged from 1981 to 2003 with 1991 as the median year. Five of these participants were diagnosed with non-A, non-B hepatitis before 1989. The nineteen participants who were significantly more distressed were diagnosed from 1990 to 2006 with 1997 as the median year. None of these participants were diagnosed with non-A, non-B hepatitis. The majority of participants who reported being unconcerned at diagnosis described receiving little information about hepatitis C, with those diagnosed before 1989 often given the impression that they had an acute infection that would disappear in time.

Information provision and naming of the virus

Prior to the naming of hepatitis C in 1989 very little was known about the virus with its designation as non-A, non-B hepatitis reflecting this absence of information. Therefore, not surprisingly, the five participants who were diagnosed prior to 1989 reported receiving minimal and often inaccurate information regarding the aetiology of the virus. The imprecise nature of the name non-A, non-B hepatitis is reflected in the narrative of one participant who referred to this diagnosis as “powerless”. This description of a non-A, non-B hepatitis diagnosis as “powerless” is illuminating, in that it expresses the absence of meaning reflected in its name.

A diagnosis of non-A, non-B hepatitis places the recipient in a liminal zone, one, as anthropologist Victor Turner (1967) says: “betwixt and between the normal, day to day cultural and social states”. The absence expressed in the name non-A, non-B, means that the recipient of this diagnosis is neither ill with a legitimate knowable disease, nor is in full possession of disease-free health. Another participant, Matthew, described the information he received from the medical profession, firstly regarding “chronic persistent hepatitis” and then hepatitis C, as negligible. He was initially excited about the designation of a new name to non-A, non-B hepatitis, hoping that with this name would come information, leading to some certainty and validation of his symptomatic illness. What he found, however, was that the diagnosis of hepatitis C left him in an equally liminal zone. While non-A, non-B hepatitis was defined by what it was not, hepatitis C, for Matthew, consisted of prognostic and symptomatic uncertainty. Many, especially early, diagnoses are characterised by such a lack of information which can result in the sense that the disease is “powerless” or transient.

HCV as ‘normalised’

A lack of knowledge by the medical profession in regards to early diagnoses helps to explain why current injectors who received a diagnosis in the 1980s and early 1990s reported being unconcerned. Often their diagnosing doctor had minimal information and presented the illness as a temporary acute infection. As time progressed and more people who inject drugs were diagnosed with hepatitis C, information became available regarding the chronic nature of the virus and long term outcomes. However, the prevalence and largely asymptomatic nature of the virus in the injecting population encouraged a ‘normalisation’ of hepatitis C. This is illustrated by Isobel, who said of her social circle:

Nobody talked about hep C really…it was just so assumed everybody had it. And nobody saw it as a big deal. No-one was thinking about it. Nobody thought it was anything other than just a complete minor detail that had no bearing on life at all. (Isobel, 43)

Isobel saw her diagnosis as ‘no big deal’, yet became more concerned about her hepatitis when she ceased injecting drugs, moved away from her injecting community, and was exposed to an understanding of hepatitis C that had never affected her before. She described the beginnings of a relationship with a man who did not use drugs and her realisation that:

…for the first time in my life what it meant to have this virus in the mainstream world. Because I’d never been part of the mainstream world. It was absolutely devastating to realise that I could be rejected as an entire human being because of this thing. (Isobel, 43)

Isobel’s experience illustrates how meaning-making around health and illness is a fluid and changing process; influenced by, amongst other things, community involvement and personal relationships.

As well as carrying the potential for rejection in ‘mainstream’ society, Hepatitis C was perceived by some participants as a marker of community. As Zac said:

It is so widespread in our community, the Auckland drug using community, oh yeah, part of the hep C club. You just sort of accept it, you gonna use long enough, you’re gonna have it, and I think it would be a bit different if you were the odd one out, you are the odd one out if you don’t have it. (Zac, 36)

Zac was injecting at the time of diagnosis, and reported being unconcerned due, in part, to the normalisation of hepatitis C within his community. He also framed his hepatitis C diagnosis in relation to HIV, stating that he “was just stoked that I didn’t have HIV”. This is a common refrain in participants’ stories of diagnosis; with the relational status of hepatitis C and HIV in injecting communities also contributing to a de-prioritisation of hepatitis C diagnosis.

Like Isobel, Zac did not experience a diagnosis of hepatitis C as disruptive to his biography when he was using, as most of his friends also had the virus. Unlike Isobel, when Zac ceased injecting his meaning-making process around hepatitis C did not dramatically change. Five years prior to the interview Zac had entered a drug rehabilitation centre and become a member of Narcotics Anonymous or NA. Many of the members of NA have hepatitis C, and it is not stigmatised within the fellowship. Thus, it can be seen that for Zac, attending NA meetings buffered the impact of ceasing drug use and entering the ‘mainstream world’ where having hepatitis C is often stigmatised. Zac’s statement “you are the odd one out if you don’t have it” is in the present tense indicating that his understandings of hepatitis C as a ‘norm’ and marker of belonging amongst people who inject drugs continues to be relevant within a community of ex-injectors such as Narcotics Anonymous. Hence hepatitis C for Zac did not occasion a biographical disruption, neither at diagnosis nor in the years since.

Bodily dys-appearance / biographical disruption

Bury’s conception of biographical disruption rests on an understanding of ongoing bodily dys-appearance as a non-normative occurrence. When a diagnosis of chronic illness occurs it precipitates a radical disruption and reformulation of the individual’s life. However, this causative relation of chronic illness to biographical disruption does not allow for the experience of individuals who are familiar with bodily dys-appearance, either in the form of prior illnesses, trauma, deprivation or experiences of stigma. Many of the ex-injectors I talked to were familiar with bodily dys-appearance long before being diagnosed with hepatitis C. As a marker of stigma and bodily disruption, hepatitis C was congruent with prior bodily experiences and this, combined with the acceptance or normalisation of the virus in injecting communities, meant that diagnosis rarely occasioned a sense of biographical disruption.

Bodily dys-appearance is common to individuals’ dependant on illicit drugs, particularly heroin or other opiates. The body clamours for attention when experiencing drug withdrawals, this “hanging out” often subsuming all other illnesses or bodily disturbances, including that of hepatitis C. As Caleb said of the virus:

I wasn’t showing any, well I didn’t notice any adverse effects. I just got up in the morning feeling like shit. It was because I was hanging out. (Caleb, 50)

People with a drug dependency can also feel marked, or singled out by their bodies. Track marks and other visible markers such as “pinned” pupils, poor skin condition or low body weight may inadvertently signify their drug use, and as such become a source of stigmatisation. When the body is regularly experienced as a site of stigmatising assumptions as well as a site of intense pain and pleasure (through the illness and alleviation of drug withdrawals), a diagnosis of hepatitis C can be experienced as congruent; yet another occasion of bodily dys-appearance or alienation.

Grace, for example, did not remember her diagnosis of hepatitis C, describing it as “just something that turned up”. When looking back at her history punctuated by emotional despair, material deprivation, drug dependency and multiple heart operations, Grace described her present experience:

I lead my little life, and I step out the front door, and I look at the trees, and I go, ‘Thank you God.’ [Starts crying] Sorry. I get really emotional about it because it’s kind of like I still get such a thrill that I’m fucking alive. You know? And more than just surviving, I’m living. And it’s really hard sometimes…So in terms of hep C, it’s a bit low on my barometer. But it’s one of those things that I have; it’s one of those things in my magic bucket that’s a real jewel to take out and to take care of. And you’re really taking care of yourself if you’re gonna address that. But I haven’t done it yet…I’ve always thought, like chess, I’ll learn hepatitis C one day and keep it for when I’m older. (Grace, 47)

For Grace, hepatitis C did not constitute a biographical disruption; her diagnosis was instead lost in a sea of multiple disruptions. All too aware of pain, suffering and the possibility of death, at the time of diagnosis Grace felt that she was not living but “just surviving”. Over the past seven years her life had changed. At the time of the interview she was enjoying “living” and being able to experience small joys such as looking at the trees. In this context it is evident that, for Grace, the experience of hepatitis C diagnosis was not one of disruption or bodily dys-appearance but instead the virus had become a life affirming symbol of self care.

Conclusion

In conclusion, participants’ reactions to diagnosis were informed by a multitude of factors including: the biomedical encounter, community identification, and their familiarity with structural constraints and bodily discomfort. The injecting status of participants upon diagnosis tended to affect their community involvement and thus their knowledge about and attitude towards hepatitis C. Those who were currently injecting tended to be diagnosed earlier, receive more ambiguous information, perceive hepatitis C to be an expected consequence of injecting, and be more familiar with unpleasant embodied experiences, including stigmatization and drug withdrawals. Thus a community normalization of hepatitis C combined with the participant’s familiarity with bodily and/or social dys-appearance would often lead to a hepatitis C diagnosis being less of a biographical disruption than it was for those who did not belong to drug injecting networks and/or had minimal prior experience of hardship or illness.

In exploring these factors the contextual nature of biographical disruption becomes evident, thus problematising Bury’s original theoretical framework. As other studies have shown, Bury’s original conception can be widened to include occasions of biographical flow or reinforcement whereby illness onset is experienced as congruent rather than disruptive. In these cases, instead of resulting from chronic illness, biographical disruption may precede or precipitate diagnosis, which is then integrated into identity with minimal disruption. Such a biographical flow is evident in many of the narratives of participants who identified hepatitis C diagnosis as of less concern whereas biographical disruption was common to participants who were “devastated”. In uncovering these broad patterns in diagnosis meaning-making I hope to have illustrated how illness understandings are contextual and relational; with community acceptance and biomedical understandings as well as embodied experiences co-constituting disease hierarchy and meaning.

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