Virtual Special Issue

Virtual special issue on ‘Illness, biography and narrative’
Editorial by Julia Lawton

Introduction

Since Parsons first coined the concept of the ‘sick role’ in the early 1950s, medical sociology has undergone a major conceptual shift. In this, the discipline’s early emphasis upon, and interest in, the biomedical perspective has been superseded by ‘a fully-fledged “sociology of health and illness” in which the lay voice is accorded equal legitimacy both inside and outside the medical citadel’ (Williams 2000: 41). Two strands of work have appeared in Sociology of Health and Illness which have formed a significant part of this shift. One of these has been concerned with the impact of illness on patients’ biographies and identities, the other with how people use narratives to give meaning and voice to their suffering over time. This virtual special issue showcases what are now considered to be classic examples of this work, and looks at how some of the key concepts and ideas arising from them have been critiqued, revised and developed in subsequent contributions to the journal.

Biographies and biographical disruption

This collection begins with what is without doubt one of the most influential contributions to medical sociology in general, and understandings of the patient experience in particular – Michael Bury’s (1982) classic paper entitled ‘Chronic Illness as Biographical Disruption’. In this, Bury draws upon findings from an interview study with patients newly diagnosed with rheumatoid arthritis (RA) in order to highlight and support his contention that the onset of chronic illness constitutes a biographically disruptive event. Becoming a patient with RA, as Bury’s work demonstrates, not only undermines one’s self concept by shifting one from  ‘a perceived normal trajectory … to one fundamentally abnormal and inwardly damaging’ (1982: 171), this painful and often disabling condition may also disrupt one’s relationships with others. In presenting such an analysis, Bury succeeds in moving away from what he terms ‘descriptive categories’ to develop broader conceptual issues. Most notably, he extends Giddens’ notion of a ‘critical situation’ to the experience of chronic illness, by drawing a parallel between the supposedly ‘radically disturbing’ event of illness onset, and an occasion such as a war. As he suggests, both kinds of situations may undermine, and hence make visible, aspects of one’s selfhood and existence which may have erstwhile remained in the background, such as the prospect or possibility of one’s own death.

It is a testament to Bury’s efforts to make a broader conceptual contribution that his work has inspired a series of papers, subsequently published in Sociology of Health and Illness, which have sought to critique and refine the concept of biographical disruption. Some have done this by looking at the impact and implications of the timing of disease onset. Others have sought to highlight and explore how the broader context within which people’s biographies are located may also influence the impact and their experience of becoming unwell.

Age, timing and lifecourse
Bury, by his own admission, focused on younger people who had recently developed RA, in order to examine the disease’s impact at a point at which he thought it would be most likely to be disruptive. As he suggested, since RA is stereotypically seen as a disease of ‘old age’, it may have been interpreted as a form of ‘premature ageing’ by his (mostly young) participants, and hence may have brought about a particularly marked biographical shift for them. In underscoring the potential significance of people’s age in this way, he paved the way for various studies which have sought to determine how useful and relevant the concept of ‘biographical disruption’ is when it is applied to those who encounter chronic illness in later life.

Two key contributions in this regard have looked at understandings and experiences of stroke in later life, the first involving elderly, working-class people living in the East End of London (Pound et al. 1998), the second Puerto Rican Hispanic, African-American and non-Hispanic white respondents resident in Florida, USA (Faircloth et al. 2004). Pandora Pound and colleagues found that, while a stroke could have a considerable, disabling impact on their respondents’ lives, most of these elderly East Enders did not present the onset of this disease as being an ‘extra-ordinary’ (i.e. biographically disruptive) event. This lack of disruption, as Pound et al. astutely observe, arose in part because their respondents already suffered from multi-morbidities and hence already led restricted (i.e. disrupted) lives. Most notably, however, by virtue of their age and life experiences, these elderly East Enders tended to present stroke as being a ‘normal’ and ‘inevitable’ feature of ageing (in other words, stroke was seen as a ‘biographically anticipated’ event – see Simon Williams’ (2000) contribution to this collection). Pound et al. thus suggest that ‘age, and the events which accumulate with increasing age, may mediate illness experience’, a contention echoed by Christopher Faircloth and colleagues in their contribution to this collection, whose older respondents from diverse ethnic backgrounds also tended to talk about stroke as being a ‘normal’ feature of later life.

The idea that a chronic illness may be less biographically disruptive in old age also finds empirical support in Caroline Sanders and colleagues’ 2002 study, which takes a different chronic condition as its focus: osteoarthritis (OA), a disease which, as these authors point out, is a major cause of morbidity in later life. The older people in this study, like the elderly stroke survivors already described, tended to view their OA as being ‘an inevitable result of their history and older age’ (Sanders et al. 2002: 236). At the same time, however, these respondents did also talk about the symptoms of OA as having a highly disruptive impact on their everyday lives. These seemingly disparate representations prompted these authors to draw upon Michael Bury’s (1988) distinction between the significance and consequence of a disease. This enabled them to account for why OA could be experienced as both a ‘normal’ (i.e. biographically anticipated) and ‘abnormal’ (i.e. physically disruptive) feature of their respondents’ lives.

Context and flow
In bringing together their own observations with those of authors such as Sanders et al. and Pound et al., Faircloth et al. conclude their paper by suggesting that a notion of ‘biographical flow’ could be used to capture and convey the way in which a chronic illness can become integrated into a ‘biography which continues to flow across space and time’ (2004: 256). In so doing, they not only provide a critique to the notion of ‘biographical disruption’, they also highlight a potential resonance between the concept of flow, and the notion of ‘biographical reinforcement’ developed by Danièle Carricaburu and Janine Pierret (1995) in their study of HIV positive men. This study drew upon the experiences of two groups of men: those infected through gay sex and those through medical treatment for haemophilia. Carricaburu and Pierret observed that, in making sense of their HIV-infection, these two respondent groups drew (differently) upon their individual and/or collective pasts. Specifically, they used aspects of these pasts to reaffirm aspects of their identities which existed prior to HIV-infection, be this as a haemophiliac whose life was already organised around an illness trajectory, or as gay man who was part of ‘a generation of men who fought for the recognition of homosexuality and the right to be different (1995: 83). Thus, while Carricaburu and Pierret do acknowledge that HIV-infection could disrupt their respondents’ lives, they seek to show how this experience was interpreted, and used, in ways that reinforced identity. More crucially, their work serves to highlight how this process of biographical reinforcement is influenced and informed by the broader historical, social and political context, one in which: ‘Being HIV-positive is not just a matter of being individually infected: it is also a question of being affected as part of a group that has its own history’ (1995: 86).

Taken together, the above studies provide an important corrective to an idea which is implicit, yet central, to the biographical disruption concept; namely, that when chronic illness strikes, it enters a life and biography formerly untouched by illness and other complexities. To the contrary, as Simon Williams (2000) sums up in a paper devoted to appraising Bury’s work, it is very important to take timing and other contextual features into account in determining how useful and relevant the notion of biographical disruption actually is. For Williams, a particularly important context to consider is that of late modernity, since, if writers such as Beck and Giddens are to be believed, the fashioning of self-identities in this context has become an increasingly contingent and reflexive process, and hence ‘biographical uncertainty’ has become an inherent feature of most people’s everyday lives. As Williams usefully points out, if our biographically embodied selves can rarely, if ever, be taken for granted in the late modern context then there may actually be little to be disrupted in the event of an illness.

Biographical work and narrative reconstruction

Most of the work on biographical disruption has been concerned with a chronic illness’s initial impact, rather than with how people come to terms with their altered circumstances over time. Carricaburu and Pierret’s contribution is something of an exception since their notion of ‘biographical reinforcement’ does incorporate the idea that, in experiencing HIV as identity-reinforcing, their respondents were actively involved in fitting their immune status into their biographies. This type of observation and analysis is developed in more detail in another influential contribution to medical sociology: Gareth Williams’ (1984) paper on: ‘The genesis of chronic illness: narrative reconstruction’, one which could be understood as picking up the story where Bury left off. 

While Williams, like Bury, interviewed people with RA, he focused on ‘seasoned professionals’, so that he could look at the disease’s longer-term impact on people’s self-concepts. In trying to make sense of why they had developed RA, Williams’ respondents provided accounts which, on close analysis, seemed to do much more than simply convey their beliefs and understandings about disease causation. Indeed, as Williams convincingly demonstrates, by choosing to present some kinds of causal explanations in preference to equally plausible alternatives, his respondents appeared to be actively engaged in an ‘imaginative enterprise’, one in which they ‘reconstructed’ and/or emphasised particular aspects of their pre-illness pasts in order to create a sense of order, meaning and purpose in the present. One respondent, for instance, blamed his RA on an earlier exposure to workplace toxins, and, in so doing, seemed to provide a more general political criticism about the exploitative work relations to which he saw himself as having been subjected in the past.

Moving from ‘beliefs’ to ‘accounts’: narratives as ‘factions’
The importance of Gareth Williams’ 1984 paper cannot be emphasised strongly enough; indeed, it is thanks in no small part to his contribution that simplistic concepts, such as ‘health beliefs’, are no longer widely used by medical sociologists. Indeed, since his work has been published, several other contributions to the journal have also called for more careful consideration to be paid to what people are actually doing, and what they are trying to achieve, when they talk about health and illness. In a contribution which synthesises findings from their own and other studies, Alan Radley and Michael Billig (1996), for instance, propose that researchers should shift their attention from ‘beliefs’ to ‘accounts’. This is because, as they further observe, people seem ‘use’ such accounts in strategic ways in order ‘make themselves accountable to others and to articulate for others their own position in the world’ (1996: 222, original emphasis). These observations and ideas resonate with Michael Bury’s own contention, presented in a later paper, that illness accounts should be understood as ‘factions’ (i.e. as a hybrid of ‘facts’ and ‘fictions’), a term which captures and conveys the idea that, rather than representing ‘a form of unalloyed subjective truth … narratives take many forms, have many uses and serve many purposes’ (Bury 2001: 281).

Lars-Christer Hydén (1997), in an overview of research on illness narratives, usefully adds to the perspectives of Radley and Billig and of Bury by suggesting that, since people’s disease accounts are essentially a form of self-presentation, situational factors, such as the audience to whom one is narrating, may play a decisive role in the narrative’s construction. The implication of this observation is that people may ‘continually produce new narratives in new contexts’ (1997: 52) as well as in light of ‘other changes in the illness process’ (1997: 61). The idea that contextual factors can influence people’s disease accounts finds empirical support in Jack Clark and Elliott Mishler’s (1992) classic paper in which they looked at patient-physician communication. In this, they present a comparative analysis of two medical encounters in which the patients narrated their illnesses in very different ways despite entering their consultations with similar agendas and health concerns. As Clark and Mishler demonstrate, these differences could be largely accounted for by the different attitudes and consultation styles of the two physicians concerned. In the first consultation they describe, the physician assumed the receptive stance of an attentive listener, leading to the patient’s ‘story’ being central to the clinical encounter. In the second, the physician adopted a more authoritative role, and focused on a biomedical agenda, resulting in the patient providing an account of their disease which lacked coherence and organisation.

Clark and Mishler also draw attention to the ways in which their patients’ narratives seemed to be informed by the tacit ‘rules’ of the clinical encounter - rules which may themselves be culturally and historically bound. In so doing, they highlight (albeit implicitly) the potential impact and influence that broader contextual factors can have on people’s accounts of illness. This type of observation is developed in more detail by Julia Lawton and colleagues in a 2007 paper which provides a comparative analysis of White and South Asian respondents’ accounts of diabetes causation. They observed that, while the White patients in their study tended to highlight notions of personal responsibility and blame when they accounted for the onset of their diabetes, South Asian respondents were more inclined to externalise responsibility. In making sense of this observation, Lawton et al. take forward Bury’s suggestion that, when lay people construct and present illness narratives, ‘they do so within cultural settings which provide specific forms of language, clichés, motifs, references … which allow and constrain what is said and expressed’ (Bury 2001: 278). Specifically, they draw upon Dumont’s (1970) distinction between ‘individualistic’ (i.e. Western) and ‘holistic’ (i.e. South Asian) cultures, in order to help understand why one respondent group tended to hold their life circumstances and the other themselves responsible for their disease.

Reflexivity and the research encounter
Some of the above contributors have also drawn attention to the analytical and methodological implications of their work. Alan Radley and Michael Billig (1996), for instance, encourage their readers to think about how research participants’ narratives may not only be ‘framed’ by the research encounter per se, but also by the presence of what is invariably a ‘healthy’, ‘at-work’ interviewer. As they suggest, research participants may feel under (implicit) pressure to make themselves accountable to this ‘healthy’ research audience and to define their misfortune in positive ways, an issue which may need to be factored into ways in which their accounts are interpreted. Michael Bury makes a similar point when he suggests that if illness narratives are principally concerned with repair and restoration of meaning (as the work of Gareth Williams and others suggests), then they may not be the best vehicles to use to access and understand the more ‘mundane’ aspects of living with, and managing a chronic disease. This important point is taken forward in Julia Lawton’s (2003) contribution. In this, she contends that, in order to access a more comprehensive and broad-ranging picture of patients’ illness experiences, medical sociologists need to be more open-minded to alternative, and seemingly less conventional, methods of data collection to the research interview.

Concluding remarks and future research agendas

Thanks to the above contributions – all of which develop Michael Bury’s work on ‘biographical disruption’ and Gareth Williams’ work on ‘narrative reconstruction’ – our understandings of how patients experience and account for illness (and health) have greatly been enhanced. Yet, whereas Bury’s concept and ideas have been subjected to wide-ranging scrutiny, the notion of ‘narrative reconstruction’, whilst referred to extensively by medical sociologists, has been subjected to much less theoretical elaboration and empirical development. This is one area where particularly fertile territory remains. Further work is needed to develop a better understanding of whether, and in what ways, people’s health/illness accounts differ according to the context and circumstances in which they are produced. To do this, not only are more cross-cultural comparisons needed as Lars-Christer Hydén (1997) has suggested, but empirical work is also required which looks at whether the same people actually provide different accounts to different audiences, and/or at different points in their disease trajectory (these kinds of studies requiring more ambitious designs to the ‘one-off’ interview). Given the medical uncertainty surrounding RA causation, it is possible that this specific disease lends itself particularly well to the kind of ‘narrative reconstruction’ which Gareth Williams has described. Future work could thus usefully look at the ways in which people ‘use’ their illness narratives in situations where they have a disease with a more ‘fixed’ aetiology, such as a single gene disorder.