Sociology of Health & Illness Vol. 25 Silver Anniversary Issue 2003 ISSN 0141–9889, pp.

23 – 40
Blackwell
Oxford,
Sociology
SHIL
©
0141–9889
April
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Anniversary
25
Original
Lay
Julia
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Blackwell
experiences
2003
Lawton
UK
Article
Publishing
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Health
of health
&Ltd
Illness
Ltd/Editorial
and illnessBoard 2001

Lay experiences of health and illness:

past research and future agendas
Julia Lawton
Research Unit in Health, Behaviour and Change, The University of Edinburgh

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.

Keywords: lay experiences, health, illness, biographical disruption, narrative

reconstruction, loss of self

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 dehu-
manises 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
© Blackwell Publishing Ltd/Editorial Board 2003. Published by Blackwell Publishing, 9600 Garsington Road,
Oxford OX4 2DQ, UK and 350 Main Street, Malden 02148, USA.
24 Julia Lawton

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 med-
ical 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 experi-
ence 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 rel-
atively recent entry into the field of medical sociology). Some of the con-
cepts and ideas advanced in the Journal’s early years have now become such
a fundamental part of the medical sociological lexicon that, to a contem-
porary 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
© Blackwell Publishing Ltd/Editorial Board 2003.
 Lay experiences of health and illness 25

of adjusting to, and living with, different types of medical technologies (e.g.
Locker and Kaufert 1988, Atkin and Ahmad 2000). Predominantly employ-
ing 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 recogni-
tion: Bury’s (1982) work on ‘biographical disruption’, Charmaz’s (1983)
study of ‘loss of self’ and Williams’ (1984) account of ‘narrative reconstruc-
tion’. 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 acknow-
ledged 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 inten-
tionally 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
© Blackwell Publishing Ltd/Editorial Board 2003.
26 Julia Lawton

biographical shift from a perceived normal trajectory through relatively pre-

dictable 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 ana-
lysis to ‘extreme’ cases, namely those within her sample who were severely
debilitated and/or housebound, Charmaz, working within a symbolic inter-
actionist 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 high-
lights, loss of self was a multi-faceted experience for her participants who,
by virtue of their illness, often led restricted lives, experienced social isola-
tion, 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 spiral-
ling into a loss within another, with devastating and potentially irreversible
consequences. For example, she describes the ways in which the stigma asso-
ciated with chronic disease may prompt people not only to experience feel-
ings 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.

Williams’ ‘narrative reconstruction’

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 con-
ceptual strategies people employ to create a sense of coherence, stability and
© Blackwell Publishing Ltd/Editorial Board 2003.
 Lay experiences of health and illness 27

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). Devel-
oping 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 sub-
tle 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 varia-
ble 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
© Blackwell Publishing Ltd/Editorial Board 2003.
28 Julia Lawton

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 ‘in-
evitable’ 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. bio-
graphically 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
© Blackwell Publishing Ltd/Editorial Board 2003.
 Lay experiences of health and illness 29

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 meas-
ures 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 indi-
vidual’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 con-
tracting 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 chal-
lenges 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 pro-
cess, involving ‘a never-ending cycle of biographical appraisals and reap-
praisals’ (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 phe-
nomenological approach in which she highlights the significance of gendered
norms and stereotypes to the ways in which pain is perceived and under-
stood 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
© Blackwell Publishing Ltd/Editorial Board 2003.
30 Julia Lawton

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 repro-
ductive 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 expecta-
tions, 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 complica-
tions 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 dis-
abilities 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 locat-
ing 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 per-
ceptions 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
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 Lay experiences of health and illness 31

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 (predomin-
ately 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 instru-
ment 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 et al. highlight the
importance of looking at the economic and material contexts of these peo-
ple’s lives, rather than resting explanations solely on cultural/ethnic factors.
For example, they point to the many economic hardships that the Chin-
ese 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 atti-
tude 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
© Blackwell Publishing Ltd/Editorial Board 2003.
32 Julia Lawton

male coronary patients and their partners, Radley points to notable differ-
ences 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 acknowledg-
ing the salience of factors such as occupational background, his study is
centrally concerned with the influence and impact of the couple’s relation-
ship 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 (inter-
personal, 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 (inter-
personal and work), economic issues, or the prevailing socio-political cli-
mate. 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.
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 Lay experiences of health and illness 33

The remainder of this article will thus be used to reflect upon possible direc-
tions 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 high-
lights 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 percep-
tion, 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 con-
text, 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
© Blackwell Publishing Ltd/Editorial Board 2003.
34 Julia Lawton

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 wel-
come, 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 oppor-
tunistic 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, descrip-
tive 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 atten-
tion to this aspect of his article because I share Thorne et al.’s (2002) con-
cern that, to date, studies of (chronic) illness experiences have predominantly
drawn upon the views and narrative accounts of verbal, articulate and ment-
ally competent adults. Indeed, it is noteworthy that, when studies in the
Journal have been concerned with the experiences of people suffering from
© Blackwell Publishing Ltd/Editorial Board 2003.
 Lay experiences of health and illness 35

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). Cer-
tainly, 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 unconven-
tional 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 indi-
vidual 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 lim-
ited 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 implica-
tion of Bury’s observations is that processes such as ‘narrative reconstruc-
tion’ (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 dis-
eased body have not generally been given a sufficiently high profile in empir-
ical 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
© Blackwell Publishing Ltd/Editorial Board 2003.
36 Julia Lawton

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 phe-
nomenological, 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).

Closing remarks

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 import-
ance of looking at timing, setting and individual biographies. This repres-
ents 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 con-
texts in which people live. However, this should not be an occasion for
complacency, as there are still many ‘missing voices’ and ‘unchartered ter-
rain’ within the literature. Not only have studies of illness experiences pre-
dominated over (more elusive) experiences of health, they have also been
overwhelmingly concerned with people with chronic rather than acute dis-
eases. 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 (qual-
itative) 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, along-
side 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 concep-
tually and empirically ‘fit’ for the next 25 years.

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
© Blackwell Publishing Ltd/Editorial Board 2003.
 Lay experiences of health and illness 37

Acknowledgements

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 Edu-
cation 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 neces-
sarily those of the funding bodies.

Notes

1 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).
2 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.
3 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)).
4 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.
5 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.

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