Lay experiences of health and illness: past research and future agendas
Address for correspondence: Julia Lawton, Research Unit in Health, Behaviour and Change, The University of Edinburgh Medical School, Teviot Place, Edinburgh EH8 9AG e-mail: J.Lawton@ed.ac.uk
Abstract This article presents an overview and appraisal of work published during the 25-year history of Sociology of Health and Illness that has contributed to our understandings of lay experiences of health and illness. It highlights an important and welcome shift from an ‘outsider’ perspective as epitomised in the Parsonian concept of the ‘sick role’ to one that focuses directly upon people's subjective experiences within the contexts of their daily lives. Particular attention is paid to the ways in which early work by Bury (1982), Charmaz (1983), and Williams (1984) has helped pave the way to an understanding of lay experiences that is sensitive to a broad range of micro- and macro-contextual influences. The article looks to the future as well as the past by pointing to ‘uncharted terrain’ and ‘missing voices’ within the medical sociology literature. It discusses some recently published work in the Journal that has opened the door to what may prove to be a 21st century sociology of health and illness. It concludes with a call for medical sociologists to be more open-minded to the use of novel and seemingly unconventional theoretical and methodological approaches.
Introduction: looking to the past
In an early contribution to the Journal, Wallach Bologh presents a critique of ‘the values and assumptions inherent in the medical system’ (1981: 189). Building upon the preexisting literature (for example, Friedson 1970, Illich 1976, Parsons 1951), she claims that modern medicine objectifies and dehumanises patients, alienating self from body. For example, she argues that modern medicine tends to ‘disregard the patient as anything but a possessor of the body or illness’ (1981: 190). Likewise, she points to the ‘professional dominance’ inherent in the medical system, wherein physicians possess and monopolise medical knowledge, and hence alienate patients from decision-making, thereby reducing the patient class ‘to a non human, that is a thing or body without intelligence’ (1981: 2000). Whilst these critiques of the medical system may well have had some truth to them1,there appears to be something quaint, almost naïve, about Wallach Bologh's views. For example, she assumes that, in order to understand patients’ supposedly alienating experiences, it is not necessary to solicit their opinions and views directly. Relatedly, she implies that it is the medical system alone (rather than other contextual factors) that is responsible for the ways in which patients experience self and body during illness.
It may seem a little unkind to home in on Wallach Bologh's article in this way. I have done so simply because it creates a useful platform upon which to illustrate the ways in which our understandings of lay experiences of health and illness have broadened since her work was published. Without wishing to give the impression that the articles published in Sociology of Health and Illness have taken place independently of other work within medical sociology and elsewhere, I will highlight a number of innovative and exciting ways in which contributors to the Journal have advanced ideas and work in the area of lay experiences of health and illness. This has been a challenging remit, not least because of the sheer volume of work that has been published in the Journal during its 25-year history. Yet, in some ways a greater challenge has been created by the passage of time since some of the most groundbreaking articles were first published (and this author's relatively recent entry into the field of medical sociology). Some of the concepts and ideas advanced in the Journal's early years have now become such a fundamental part of the medical sociological lexicon that, to a contemporary reader, they appear almost commonsensical. Thus, one needs to keep in mind what came before (and not simply after) the publication of this early work in order fully to appreciate the authors’ long-term contributions.
Looking back at the articles that have been published in the Journal's 25-year history, one is immediately struck by their diversity. Taken together, they have provided a window into the life-worlds of people with a wide range of different diseases (albeit mostly chronic diseases – a point I shall return to later), at different stages in their illnesses, and in a variety of different contexts. To give a few examples, publications have examined the experiences of people with diseases and disabilities as varied as insulin dependent diabetes (Rajaram 1997), cystic fibrosis (Waddell 1982), Parkinson's Disease (Pinder 1992), cancer (Mathieson and Stam 1995) and paraplegia (Yoshida 1993), and have been concerned with a wide range of issues, such as: experiences of stigmatisation (real and anticipated), uncertainty and fear, and the strategies employed to avoid and neutralize these phenomena (e.g.Scambler and Hopkins 1987, Nijhof 1995, Davidson 2000); experiences of discrimination and isolation within and outwith the work place (Locker and Kaufert 1988, Ewan, Lowry and Reid 1991, Pinder 1995); and, experiences of adjusting to, and living with, different types of medical technologies (e.g.Locker and Kaufert 1988, Atkin and Ahmad 2000). Predominantly employing qualitative methods (principally in-depth interviews) and placing great emphasis upon rich and textured description, many studies published in the Journal have served to champion patients’ perspectives by placing them centre stage (see Williams 2000). As such, they have formed part of a broader conceptual shift within medical sociology from the ‘outsider perspective’, epitomised in the Parsonian concept of the ‘sick role’ (Parsons 1951), to an ‘insider perspective’ concerned with patients’ subjective experiences outside (as well as within) the medical context (see Conrad 1990).
Yet, the articles that have stood out most in the Journal's history have been those which have extended their grasp beyond the immediacy of their area of empirical investigation, to develop broader conceptual and analytical schemes, which have contributed to a general understanding of the (chronic) illness experience. In this respect, three articles deserve particular recognition: Bury's (1982) work on ‘biographical disruption’, Charmaz's (1983) study of ‘loss of self’ and Williams’ (1984) account of ‘narrative reconstruction’. These will be described in turn before their longer-term contribution is considered.
Bury's ‘biographical disruption’
As one of the most heavily cited papers in the Journal's history, Mike Bury's (1982) ‘Chronic illness as biographical disruption’ has been widely acknowledged as constituting a significant turning point in our understanding and conceptualisation of lay experiences of (chronic) illness. In this paper, Bury draws upon interviews with rheumatoid arthritis (RA) patients, and intentionally focuses upon those for whom the disease has only recently become a part of their lives. In a welcome attempt to move away from descriptive categories to broader theoretical concerns, Bury develops a perspective on chronic illness as constituting a major disruptive experience – what he terms a ‘biographical disruption’, a concept informed by Giddens’ (1979) notion of a ‘critical situation’. Indeed, in much the same way as Giddens shows that major events – such as war – can undermine the taken-for-granted nature of the social fabric, Bury highlights the complex and multi-faceted ways in which the experience of chronic illness can lead to a fundamental rethinking of a person's biography and self-concept. Disruption takes place on many different levels within Bury's conceptual scheme. For example, he draws attention to the ways in which arthritic pain and discomfort can bring about a new consciousness of the body, and of the contingent and tenuous nature of one's (embodied) existence. As he suggests, chronic illness ‘involves a recognition of the worlds of pain and suffering, possibly even death, which are normally only seen as distant possibilities or the plight of others’ (1982: 69). Likewise, the arrival of an unanticipated disease (most of Bury's informants were comparatively young and viewed arthritis as being a disease of older people) may shatter hopes and plans for the future, marking ‘a biographical shift from a perceived normal trajectory through relatively predictable chronological steps, to one fundamentally abnormal and inwardly damaging’ (1982: 171). Finally, as Bury's study also highlights, the onset of disease not only disrupts structures of meaning, but also relationships and material and practical affairs. For example, arthritis can lead to a growing physical dependency on others and, consequently, can result in a breaching of norms of social reciprocity and mutual dependency. Thus, as he suggests, the strength of one's social network (for example, how supportive family and work colleagues are willing and able to be), and one's ability to mobilise physical and other resources may be crucial to the ways in which the illness is subsequently experienced.
Charmaz's ‘loss of self’
A not dissimilar perspective is presented by Kathy Charmaz (1983), who, publishing at roughly the same time as Bury, draws upon the experiences of people with a variety of chronic diseases. Intentionally confining her analysis to ‘extreme’ cases, namely those within her sample who were severely debilitated and/or housebound, Charmaz, working within a symbolic interactionist tradition, develops the concept of ‘loss of self’ to describe their experience of ‘former self-images crumbling away without a simultaneous development of equally valued new ones’ (1983: 168). As she vividly highlights, loss of self was a multi-faceted experience for her participants who, by virtue of their illness, often led restricted lives, experienced social isolation, were discredited by self and others, and experienced the humiliation of being a burden on others. In this study, Charmaz makes two particular contributions to our understandings of lay experiences. First, she advances work in the area of suffering by moving away from a narrow medicalised view of suffering as physical discomfort per se, to one that focuses on patients’ perspectives and the day-to-day contexts within which they live. Second, her account draws attention to the complex and overlapping ways in which different aspects of the illness experience may reinforce and amplify one another, a loss of self in one area of her participants’ lives often spiralling into a loss within another, with devastating and potentially irreversible consequences. For example, she describes the ways in which the stigma associated with chronic disease may prompt people not only to experience feelings of low self-esteem, but also to withdraw from social activities (e.g. quitting work, limiting social engagements). In turn, living a more restricted life may exacerbate their feelings of loss of self, because of the absence of opportunities for self-validation through meaningful interactions with others.
Finally, in a paper that could be read as a continuation of the story where Bury (1983) and, to a lesser extent, Charmaz (1983) left off, Gareth Williams (1984) pioneers the notion of ‘narrative reconstruction’ to describe the conceptual strategies people employ to create a sense of coherence, stability and order in the aftermath of the ‘biographically disruptive’ event of illness onset. Like Bury, Williams draws upon first-hand accounts of people suffering from RA, but instead of talking to those who have been newly diagnosed, he focuses on ‘seasoned professionals’ (1984: 176), so as to be able to explore the longer-term effects of chronic disease on self-concepts (1984: 176). Developing a conception of narrative as actively constituting ‘social reality’ (see Hyden 1997), Williams seeks to explore why his participants chose to home in on particular models to explain the onset of their disease, when other explanatory models were equally plausible. In doing this, he presents a subtle and sophisticated analysis of the ways in which people's accounts of causation are not simply concerned with beliefs about disease aetiology per se, but, rather, constitute an imaginative attempt to find a legitimate and meaningful place for RA in their lives. Indeed, in seeking to explain their current (diseased) states, Williams’ informants often pointed to what they saw as significant events from their pasts, such as a death within the family or a negative/exploitative work experience. In so doing, as Williams suggests, they added a moral (and sometimes overtly ‘political’) component to their accounts. Thus, Williams’ study highlights the ways in which narrative reconstruction can be used to ‘reconstitute and repair ruptures between body, self, and world by linking and interpreting different aspects of biography in order to realign present and past and self and society.’ (1984: 197). Hence, he could also be credited with pre-empting Bury's (1991) call for sociological studies to examine the positive steps people take in response to chronic illness, rather than simply focusing upon the problems that they encounter.
In highlighting the overlapping and interdependent nature of body, self and society, as well as present and past, Williams’, Bury's and Charmaz's papers have served to underline the importance of looking at timing, setting and individual biographies in order to understand the complex and often variable ways in which people experience, and ‘live with’, illness. In so doing, these studies – alongside those such as Corbin and Strauss (1987), Glaser and Strauss (1966) and Strauss and Glaser (1975) – have opened the door to a whole plethora of excellent work published within (and outside) the Journal that has sought to locate and understand experiences of illness (and, to a lesser extent, experiences of health) within a diverse range of macro and micro contextual factors. As I now illustrate, this body of work has been principally concerned with the (potential) influence and impact of timing, location and relationships with others (e.g. family relationships, relationships with work colleagues) on individual experiences of health and illness.
Age, timing and biographies: rethinking ‘biographical disruption’
The importance of the age and stage in the lifecourse at which a person becomes unwell has been a central theme in several papers published in the Journal, which have sought to revisit and critically reappraise Bury's (1982) concept of biographical disruption. Timing is an issue which Bury (1982) originally drew attention to when he pointed to the age of his informants (most of whom were relatively young) and the stereotype of RA as being a disease of older people, in order to present one explanation for why they experienced the onset of the disease as being so disruptive. The idea that a disease may be experienced as more or less disruptive depending upon the point in the lifecourse at which it first becomes manifest has subsequently been developed in studies by Sanders et al.(2002) and Pound et al. (1998a), both of which are concerned with illness experiences in ‘older age’. Sanders et al.'s study focuses on older people's experiences of osteoarthritis (OA) – a disease which, like RA, is stereotypically seen as being ‘normal’ and ‘inevitable’ in later life (Blaxter 1983). Whereas Bury's (1982) predominantly younger participants perceived the onset of RA as a premature assault on the self, those in Sanders et al.'s (2002) study (who were on average much older) tended to view the symptoms of OA as being a ‘normal’ and integral part of their biographies. Consequently, the onset of disease was viewed more as a ‘biographically anticipated’ event (see Williams 2000) than as one that was biographically disruptive. A similar observation is made by Pound et al. (1998a) who, in an exploration of the experience of stroke amongst predominantly elderly, working class people in the East End of London, draw attention to the ways in which the age and accumulated life experiences of their informants appeared to mediate their perceptions of, and responses to, their illness. As Pound et al. vividly highlight, whilst stroke often had a considerable impact on their participants’ lives – for example, on the way they walked, talked, washed and dressed themselves (see also Pound et al. 1998b) – it was not normally perceived as an extra-ordinary (i.e. biographically disruptive) event. On the contrary, many saw stroke as a ‘normal crisis’ in their ‘hard-earned lives’ (Cornwell 1984) in which they were already familiar with the worlds of pain, suffering and death (Bury 1982), because of their age, backgrounds and exposure to events such as the Second World War2.
Pound et al. (1998a) suggest that another reason why stroke was not experienced as excessively ‘disruptive’ by their participants is because many of them had suffered from multi-morbidities prior to their stroke, and thus already led restricted lives. Carricaburu and Pierret (1995) make a similar observation in their interview study of asymptomatic HIV positive men who were infected through gay sex or medical treatment for haemophilia. They found that, whereas those infected because of gay sex tended to experience HIV as biographically disruptive, many of the haemophilics perceived and experienced HIV as a form of ‘biographical reinforcement’. This is because, long before HIV infection, these haemophilic men had organised their lives and biographies around an illness trajectory. For example, because of their awareness of themselves as carriers of an incurable genetic illness, some had decided not to marry or to have children. Likewise, given the unpredictable and accidental nature of hemorrhages, these men were already used to living their lives in the face of uncertainty, and many had given up potentially ‘risky’ activities such as sports and travelling. Consequently, as Carricaburu and Pierret conclude: ‘Being infected with HIV led them to reinforce measures of the sort already taken; there was no disruption. It ‘proved the fatality of being haemophilic’ (1995: 81).
The above studies thus underline the importance of looking at an individual's whole biography, not just the age at which they first contracted a particular disease. This point is also illustrated in Ciambrone's (2001) study of the effects of HIV on the identities of infected women many of whom, prior to infection, had had a history of drug use, prostitution, and/or had lived in extreme poverty. As Ciambrone vividly highlights, these women had experienced a number of assaults on their self-identities independent of their HIV infection (for example, having their children taken away from them, or being the victim of domestic violence), and, in retrospect, often considered these other events to have been more disruptive and devastating than contracting HIV3. Hence, Ciambrone's study, alongside Pound et al.'s (1998a) and Carricaburu and Pierret's (1995), serves as an important corrective to Bury's (1982) concept of ‘biographical disruption’, in that it forcefully challenges his (implicit) assumption that illness always enters lives hitherto untouched by crisis or struggle. Bury's concept has also come under similar scrutiny in Williams’ (2000) recent theoretical appraisal of his work. In this, Williams casts doubt upon Bury's (1982) implied notion that bodies and selves are always taken for granted before the onset of disease (and thus can be disrupted). Drawing upon Giddens’ (1990, 1991, 1994) and Beck's (1992) work on ‘risk society’, Williams highlights the ways in which the fashioning of self-identities has become an increasingly reflexive and contingent process, involving ‘a never-ending cycle of biographical appraisals and reappraisals’ (2000: 57), which include bodies as well as emotional selves (2000: 58). Thus, he makes the point that ‘biographical uncertainty’ may be an inherent feature of many people's lives, and does not simply come to the fore in the event of illness.
Social and demographic influences: the macro-context
While considerable attention has focused upon the salience of people's ages and biographies to the ways in which illness is experienced and made sense of, some studies have drawn attention to the importance of other (albeit often related) social and demographic influences. For example, in a study of pain perceptions, emotions and gender, Bendelow (1993) develops a phenomenological approach in which she highlights the significance of gendered norms and stereotypes to the ways in which pain is perceived and understood in the context of people's daily lives. At the most superficial level, her study draws attention to different social expectations regarding the ability of men and women to cope with pain (she observes that women are believed to tolerate pain better than men because of their ‘female biology’ and reproductive role). However, by building upon Freund's (1990) concept of the ‘expressive body’, as well as more general ideas about the ways in which embodied experiences are modified by the social categories, Bendelow's study opens the door to thinking about the links between gendered expectations, stereotypes and lived experiences. In particular, her study alludes to the ways in which the ‘experience of living in a body and being a gendered body in a hierarchically organised gender-differentiated world’ may impact upon the manner in which different forms of pain are actually experienced and ‘lived out’ (1993: 290).
Whereas Bendelow's study is concerned with the (potential) impact of (culturally determined) gendered norms and stereotypes, Ville et al. (1994) illuminate the ways in which the prevailing historical and socio-political context may also be salient to the ways in which illness and disability are experienced. In this study, they explore the self-perceptions of people with physical impairments by comparing the experiences of three distinctive groups of participants: people with paraplegia, people with severe complications of poliomyelitis, and a group without any physical impairment. Whereas both the non-disabled and paraplegic participants in their study tended to display a diverse range of self-identities, those with poliomyelitis tended to describe themselves in homogenous terms, namely, as being ‘self-controlled’ and ‘conscientious’. As the authors convincingly demonstrate, the socio-political context in which the disability first developed appears to be key to understanding these differences. Most of the participants with paraplegia had been recently disabled – thus their illness experiences began during an activist-influenced area in which a plurality of positive images of disability existed. In contrast, those with poliomyelitis developed their disabilities during an historical epoch (1950s) in which a rehabilitation model predominated. Such a model emphasised conformity to prevailing social norms, and hence, as Ville et al. suggest, led to the development of more homogenised self-images amongst those concerned.
Ville et al.'s paper, like Bendelow’s, thus highlights the importance of locating illness experiences in ‘collective’ contexts that extend beyond the life and biography of the individual concerned. This is a theme that Carricaburu and Pierret (1995) also develop to great effect in their study (referred to above) of asymptomatic HIV positive men. As they illustrate, adjusting to HIV involved a process of ‘biographical reinforcement’ (what Williams (1984) would term ‘narrative reconstruction’) in which their participants systematically drew upon, and reinforced, aspects of their collective identities that were already built around their (shared) experiences of haemophilia or homosexuality.
Overarching, contextual factors are also brought to the fore in d’Houtaud and Field's (1984) now classic study of social class variations in health perceptions amongst members of a French population. This paper, I should add, also stands out as being one of very few in the Journal's history to actually focus on health rather than illness (see below). In a study which bears some striking parallels to Bourdieu's (1984) contemporaneous work, La Distinction, d’Houtard and Field highlight the ways in which perceptions of health and the body are mediated by class location (what Bourdieu would term ‘habitus’). Whereas participants who belonged to lower (predominately manual) classes tended to evaluate health in terms of its physical attributes, as a means to an end, in which the body was seen as the instrument for achieving that end (e.g. the execution of social and physical tasks), for those in higher social classes (for whom a more hedonistic lifestyle was possible), health was perceived as an end in itself. In other words, health, for members of privileged classes, was seen as an attribute appropriated by an individual and employed in hedonistic ways through the expressive and aesthetic use of the body.
d’Houtaud and Field's study creates an avenue for thinking about ways in which experiences of illness/disability may also vary according to one's location in the socio-economic order, an issue that is touched upon in Anderton et al.'s (1989) comparative study of the experiences and views of Chinese and white families caring for a disabled child at home. Anderson et al. observe that the Chinese and white families differed in terms of their attitudes towards their child's illness/disability and the priority they to gave to supposedly ‘normalising’ procedures, such as encouraging their child to use prosthetic devices and/or to engage in physiotherapy. In seeking to understand why Chinese families were less inclined towards normalising procedures than their white counterparts, Anderson etal. highlight the importance of looking at the economic and material contexts of these people's lives, rather than resting explanations solely on cultural/ethnic factors. For example, they point to the many economic hardships that the Chinese families faced, which made it particularly difficult for them to find the time and resources necessary to supervise their child. On a deeper level, they also draw attention to the Chinese participants’ location within the socio-economic order, and the ways in which this appeared to influence their attitude towards their child's body, and thus the importance they attached to therapies and procedures geared to making their child's body ‘look normal’. According to the Chinese parents’ evaluatory schema, to have a ‘normal’ child is to have a child who is ‘fit for work’– a pragmatic perception of the body and health that differed from the more immediate, aesthetically-influenced concerns of their (predominantly more affluent) white counterparts.
Selves in relation: micro-contextual influences
Anderton et al.'s study also alludes to the importance of looking at micro factors (e.g. familial and other interpersonal relationships) in understanding how illness is ‘lived’ and negotiated in people's daily lives, a theme that has been explored in greater detail by Radley (1989). In an interview study of male coronary patients and their partners, Radley points to notable differences in the ways in which his participants adjusted to the illness: whilst some modified their lives to accommodate the illness, others attempted to carry on as if the coronary episode had never taken place (for example, returning to work at the soonest possible opportunity). Whilst acknowledging the salience of factors such as occupational background, his study is centrally concerned with the influence and impact of the couple's relationship with one another. For example, Radley observes that couples in a marked, traditional marital relationship were less likely to make changes to accommodate the effects of illness (e.g. increased lethargy) than those for whom there was greater flexibility in their marital roles.
The role played by relationships – either as a hindrance or as a resource upon which people may draw in their attempts to live with chronic illness – is also made apparent in Pinder's (1995) study of the work experiences of people with arthritis. As her paper demonstrates, whether or not a person with arthritis is able to hold down their job may not only be dictated by the constraints placed on them by the immobilising effects of their disease, but also by the (idiosyncratic) behaviours and attitudes of their managers and other work colleagues (for example, whether or not a manager is willing to accommodate flexible working hours). Thus, Pinder's study reinforces Bury's (1982) earlier finding regarding the importance of ‘external’ resources (interpersonal, structural and material) to the ways in which illness is experienced and lived out, a theme that is also highlighted in Hart's (2001) excellent study of what she terms ‘system induced setbacks’ in stroke recovery. In this study, she highlights the ways in which setbacks in stroke recovery which, from a medical perspective, appear to be due to a problem with the patient, may, in reality, result from a problem with the health and social care systems put in place in the aftermath of the stroke. In so doing, Hart also sends out an important reminder that, when looking at experiences of illness, we should not push the medical context too far to the sidelines.
Looking to the future
As I hope the above overview demonstrates, considerable progress has been made in the medical sociology field in the past few decades, and much of this progress can be attributed – directly and indirectly – to those who have published in the Journal. To be sure, many issues and challenges have been addressed; in particular, Bury's concern that studies of (chronic) illness experiences should move away from a focus on meanings per se to embrace the effects of wider factors (Bury 1991: 462), be these relationships (interpersonal and work), economic issues, or the prevailing socio-political climate. Yet, despite the progress that has been made, there is still much work to be done, not least because the contexts within which health and illness are defined and experienced are constantly shifting and changing terrains. The remainder of this article will thus be used to reflect upon possible directions for future empirical and analytical work, and will draw attention to some articles recently published in the Journal which open the door to what may be prove to be a 21st century sociology of health and illness.
Towards a sociology of health and healthy bodies
Despite the Journal's avowed focus on the sociology of health and illness, it is notable that, to date, virtually all of its articles have been concerned with experiences of illness rather than those of health. Arguably there are good reasons for this, such as Leder's (1990) suggestion that the ‘healthy’ body tends to be experienced as an ‘absent presence’ in the context of everyday life, and only becomes a subject of conscious attention when illness and other dysfunctions ‘set in’ (see also, Nettleton and Watson 1998, Williams and Bendelow 1998, Lawton 2000). In other words, experiences of health are more intangible and elusive than experiences of illness, making the former much more challenging to study. Nonetheless, medical sociological research will have to take up this challenge if the discipline is to keep pace with the emerging ‘risk society’ (Beck 1992), within which ‘healthy’ bodies, rather than those which are ‘sick’ or ‘diseased’, are increasingly becoming the sites for medical attention and interventions (Lupton 1995, Petersen and Lupton 1996). In light of this, Monaghan's (2001) study of bodybuilding subculture stands out as exceptional not only because it is one of a small minority of articles to take ‘healthy bodies’ as the starting point for observation, but also because it contains a sophisticated analysis which has the potential to be extended to other settings and contexts. In this study, Monaghan aims to understand why a supposedly health-promoting lifestyle such as bodybuilding is often accompanied by a willingness to engage in potentially health-damaging activities such as illicit drug use. In looking at this phenomenon, he highlights the ways in which, within popular culture, health is increasingly being conceived and evaluated in representational rather than instrumental terms, the appearance of health (achieved through the cultivation of a strong-looking, fat-free body) often being regarded as more important than the attainment of health per se. As Monaghan suggests, this widespread popular perception, combined with the immediate, sensual pleasures arising from anaerobic exercise (pleasures exacerbated by the experience of a ‘chemically enhanced’ body), serves to explain the sustainability of ‘risky’ bodywork. Thus, his study draws attention to the ways in which, within the contemporary context, the lived, ‘healthy’ body contains the potentiality for its own destruction. As I have alluded to elsewhere (Lawton 2002), such an analysis lends itself well to thinking about ways in which the ‘healthy body’ may ‘obstruct’ health promotion messages; in particular, those directed towards ‘at-risk’ (i.e. currently ‘disease-free’) individuals. In addition, by highlighting the sensual (i.e. embodied) pleasures of bodybuilding, Monaghan draws attention to the way in which the ‘healthy’ body is not always and necessarily experienced as an ‘absent presence’. Consequently, his work casts empirical light on the argument that, from a lay perspective, (good) health consists of more than an absence of illness (see, for example Blaxter 1990).
Missing voices; uncharted terrain
Not only have most articles been concerned with experiences of illness rather than those of health, virtually all have focused their attention upon accounts of chronic illnesses. In this respect, Rier's (2000) article is particularly welcome, as it is one of very few to have returned to the acute/critical illness experience in the post-Parsonian era. In what constitutes a piece of opportunistic research – what Rier terms ‘inadvertent ethnography’ (2000: 84) – he describes and analyses his experiences of receiving care in an Intensive Care Unit (ICU), where he was admitted in acute respiratory and kidney failure. Rier spent most of his 15-day stay in the ICU sedated, intubated and attached to a respirator, which made it impossible for him to communicate verbally. At one point, he nearly died. In addition to providing a very lucid, descriptive account, Rier uses his experiences to provide a powerful reassessment of current thinking on such issues as disclosure of information to patients and patient participation in treatment decision-making. Indeed, Rier reports that when he was in his most weak and impaired state, he neither had any wish for (medical and other) information to be shared with him, nor did he have any motivation to take an active role in treatment decisions: he simply wanted to be looked after and to get better. Thus, he came out of his ICU experience with a new sympathy for Parson's (1951) seemingly paternalistic concept of the ‘patient role’ as being one that is passive and that involves seeking medical attention and complying with doctors’ orders.
Whilst Rier's article serves to highlight that our (general) abandonment of a Parsonian focus on acute illness may have left much unfinished business, in some respects an even more exciting feature of his work is his discovery and subsequent endorsement of a novel method of data collection. When connection to a respirator (and shortness of breath) made speech impossible, Rier used a notebook for communication purposes. When he recovered, he found his notebook entries an invaluable resource for recapturing his ICU experience. Indeed, he goes as far as to propose the use of this hitherto ‘undiscovered data source’ in future research with ICU respirator patients, thereby creating a means to represent this ‘critical portion of the illness spectrum’ (Rier 2000: 86) in the medical sociology literature. I draw attention to this aspect of his article because I share Thorne et al.'s (2002) concern that, to date, studies of (chronic) illness experiences have predominantly drawn upon the views and narrative accounts of verbal, articulate and mentally competent adults. Indeed, it is noteworthy that, when studies in the Journal have been concerned with the experiences of people suffering from verbal, mental and/or other cognitive impairments, they have tended to draw on caregiver and professional perspectives (e.g.Gubrium's (1987) study of Alzheimer's disease, Sweeting and Gilhooly's (1997) examination of the caregiver experience vis-à-vis dementia, and Gray's (1994) study of the ways in which family members ‘cope’ with caring for a person with autism). Certainly, these studies have made a fundamentally important point, namely, that illnesses do not simply affect individuals in isolation but can impact upon whole social networks4. It remains the case, however, that there are still many ‘missing voices’ in the literature, a situation which, I would argue, is at least partly attributable to the fact that one particular method of data collection has been – and continues to be – the mainstay of qualitative medical sociology: the research interview5.If there is one fundamental lesson to be learnt from Rier's (2000) article, it is that, in order to explore and represent the entire illness spectrum, medical sociologists are going to have to be more open-minded to the use of alternative and sometimes unconventional ways of collecting data. This, I believe, will be one of the greatest and most exciting challenges for the future, especially in light of the time and funding constraints created by the organisations most likely to sponsor medical sociological research, together with the rigorous requirements for informed consent now stipulated by research ethics committees.
Opening the door to a broader range of methods and methodologies may also give access to a more broad-ranging and comprehensive picture of individual illness (and health) experiences than has typically been achieved through the use of research interviews. As Bury (2001) has recently pointed out, inviting people to talk about illness (i.e. to provide illness narratives) tends only to give insights into their experiences in highly specific and limited ways. Building upon the work of Riessman (1990), he draws attention to the ways in which (illness) narratives – which, by their very nature, require the presence of a listener (interviewer) and his/her questions and comments – may be more concerned with the repair and restoration of meaning than with conveying the ‘mundane aspects of experience’ (2001: 283). One implication of Bury's observations is that processes such as ‘narrative reconstruction’ (Williams 1984) may at least be partly an artefact of the research interview, an issue which raises important questions about the extent to which the ensuing ‘benefits’ actually carry over into people's daily lives. I may be digressing in making this observation; suffice to say here that, were medical sociology to move away from its overwhelming fondness for the research interview, it may go some way to addressing Kelly and Field's (1996) concern that the ‘mundane’, daily aspects of ‘coping with’ the diseased body have not generally been given a sufficiently high profile in empirical studies of experiences of (chronic) illness (see also Williams 1996). This neglect of the body, they argue, is regrettable, given that the ‘physical aspects of living such as eating, bathing and going to the toilet are the prime focus of the experience of chronic illness, because above all else coping with chronic illness involves coping with bodies’ (1996: 247). Finding ways of giving the body a higher empirical profile within the literature may also help to promote a widespread and rigorous treatment of its theoretical aspects and implications. To be sure, various contributors have called for the body to be brought more widely and explicitly into the picture, not only as a phenomenological, lived, emotionally expressive entity (Freund 1990, Bendelow and Williams 1995), but also as a pre-discursive, material entity, one which places ‘fleshy’ limits on the extent to which identity construction is possible in the aftermath of illness (Williams 1999).
Clearly, our understandings of lay experiences of health and illness have broadened considerably over the past 25 years, and this is due in no small part to the people who have published in the journal of Sociology of Health and Illness. In particular, the early articles by Bury (1982), Charmaz (1983) and Williams (1984) have helped to spearhead a more general understanding of individual (illness) experiences which recognises the overlapping and interdependent nature of body, self and society, together with the importance of looking at timing, setting and individual biographies. This represents a significant move from an earlier time in which a medical perspective predominated (see, for example, Gold 1977, Johnson 1975) and studies of patients’ experiences (when they existed) were divorced from the daily contexts in which people live. However, this should not be an occasion for complacency, as there are still many ‘missing voices’ and ‘unchartered terrain’ within the literature. Not only have studies of illness experiences predominated over (more elusive) experiences of health, they have also been overwhelmingly concerned with people with chronic rather than acute diseases. It is also notable that the ‘significance’ of illness has tended to take precedence over its ‘consequences’ for individuals in their daily lives (see Bury 1988, 1991), a situation which may be at least partly attributable to the research interview being the main method for collecting data within (qualitative) medical sociology. Certainly, there are strong grounds for suggesting that the research interview invites a particular type of (disembodied) talk about experiences of health and illness, one that has led to calls for ‘sick’ and ‘healthy’ bodies to be given a higher profile at both an empirical and theoretical level in work on lay experiences. Taking up this challenge, alongside a more open-minded attitude to methods of data collection will, in my opinion, pave the way for a sociology of health and illness which is conceptually and empirically ‘fit’ for the next 25 years.
Particular thanks go to Nina Hallowell for making helpful comments on an earlier draft of this article. The Scottish Executive Health Department and the Health Education Board for Scotland jointly fund the Research Unit in Health, Behaviour and Change. All opinions expressed in this article are those of the author and not necessarily those of the funding bodies.
It is useful to keep in mind that, since Wallach Bologh's article was published, there have been a number of broader changes within and outwith the medical profession. For example, organisations such as the modern hospice movement and alternative health movements have been successful in advancing a concept of holistic (i.e. whole person) care (Coward 1989, Saunders 1993). Likewise, the emergence of ‘consumerist’ culture (for better or worse) has led to a developing ethos within medicine that patients should be actively involved in decisions surrounding their treatment and care (Charles et al. 1999).
It is noteworthy that neither Pound et al. (1998a) nor Sanders et al. (2002) observed a process of ‘narrative reconstruction’ (Williams 1984) taking place during their interviews, precisely because, as far as their participants were concerned, no major ‘biographical disruption’ (Bury 1982) had taken place to start with.
All of the women in Ciambrone's study were asymptomatic, and it is quite possible that their perspectives would change were they to start experiencing disruptive and immobilising bodily complications (see, for example, Lawton (2002).
It is useful to add here that, despite the overwhelming interest in Bury's (1982) concept of ‘biographical disruption’ in the Journal's history, there has been no obvious attempt to extrapolate his ideas to the caregiver experience.
Focus groups are also becoming an increasingly popular method for collecting data in medical sociology (although few of the studies published in the Journal have actually used this method). However, like one-to-one interviews, focus groups require people who are able to communicate verbally. In addition, participants often need to be sufficiently mobile to attend groups outside their own homes.