Sm. SC;. Med. Vol. 30, No. II, pp. 1173-1186, 1990 0277-9536:90 53.00 + 0.00 Printed in Great Britain. All rights reserved Copyright c 1990 Pergnmon Press plc

PERSONAL NARRATIVES, SOCIAL CAREERS AND MEDICAL COURSES: ANALYSING LIFE TRAJECTORIES

IN AUTOBIOGRAPHIES OF PEOPLE WITH MULTIPLE SCLEROSIS

IAN ROBINSON

Department of Human Sciences, Brunei, The University of West London, Uxbridge. Middlesex UB8 3PH, England

Abstract-Personal accounts of illness have always proved difficult to analyse. Using the distinction between personal narratives of illness, social careers of sickness and physical courses of disease this paper argues that such narratives provide an important and complementary means of understanding changes in health status. In developing a broad typology of such narratives it is argued that they can be considered as thermatically organised life stories. Personal accounts of the lives of people with multiple sclerosis are subject to narrative analysis, and the value of such perspectives is stressed in giving access to the personal world of illness.

Key words-multiple sclerosis, life story, illness, personal narrative

INTRODUCTION

Personal accounts of illness are often viewed with considerable ambivalence as a research resource. On the one hand they provide a density of texture, a depth of personal meaning, and an insight into the experience of illness not readily available through other means [I, 21. On the other hand these very qualities seem to make any systematic, valid and reliable attempts to create generalisable propositions difficult, if not impossible [3,4]. Frank succinctly states this ambivalence in her consideration of life histories.

The use of life history for scientific purposes demands analysis and abstraction. However, the self-evidence of the life history makes it difficult even to conceive of ways of analysing it [5].

The current dominance of quantitatively based and biomedically orientated research techniques reinforce concern over the possibility and the propriety of generating data which can be seen in any sense as equivalent in status to the stemming from more formal methodologies operating within a traditional scientific paradigm. In part the difficulties are com- pounded by the lack of a clear framework within which personal accounts of illness can be considered for analytical purposes [3]. Therefore a major task in this problematic situation is a seek to develop the basis of such of framework, especially one which places personal accounts in relation to commonly used conceptualisations of disease, sickness and illness.

The relationship between these three concepts- disease, sickness and illness-explicated and devel- oped by a number of writers [6,7] offers a useful key to understanding the continually altering relationship between health and life particularly in the analysis of qualitative, as well as quantitative data on chronic physical illness [8,9].

A clear feature of personal accounts-stories-of illness, whether as life histories, diaries or in other written or oral forms is their temporal structure [IO, 1 I]. Askham’s approach to the analysis of stories adds a further component in defining them as mini- mally comprised by

. . the recounting of two related events in temporal se- quence together with some element of finale 1121.

The narrative drive and direction of such stories comes from the coherence with which the events described fit together in a perceived, and retrospec- tively constructed associative, or causative sequence [13]. However, the processual and sequenced nature of personal accounts is not a feature unique to them. Two recent studies [l4, 151 focussing on narratives of illness from different perspectives emphasise both the power and significance of such accounts, and by implication indicate the parallels between the tempo- ral referents of personal and biomedical ‘stories’ of illness, sickness and disease. Disease as a biomedical taxonomy and sickness as a social status cannot be easily interpreted without reference to their particular dynamic contexts. Diseases may be characterised by their unique pattern-their course-which they are deemed to follow through the unfolding of (biomedi- tally) observable signs and symptoms over time. Sickness may be recognised through the socially visible operation of a sequence of interactions and their social consequences-the social careers-of those subsequently designated ‘sick’ and others with whom they are in contact [l6]. In short, accounts of disease, sickness and illness, although defined within different conceptual frameworks and using ostensibly different rules of construction, are implicitly written as narratives. They build up, document and order preceding events, findings and circumstances which together constitute a clear trajectory which consti- tutes the disease, sickness or illness.

1173

1174 IAS ROBINKIN

FRAMING PERSONAL ACCOUNTS OF CHANGING HEALTH STATCS: PERSONAL NARRATIVES, SOCIAL

CAREERS AND PHYSICAL COURSES

Personal accounts of illness demonstrating “the storied nature of human conduct” [17] must first be set against the ordinariness of illness. Most people’s lives, whether in the context of multiple sclerosis or not, are lived with virtually constant attention to phenomena which may or may not be designated by themselves as illness, by others a sickness, or, by those professionally operating with a biomedical model, as disease [ 18-201. These ubiquitous phenomena, or ‘problematic experiences’ as Locker calls them [21], appear to continuously invade everyday life and call on an array of personal, social and professional interpretative frameworks to make sense of them. The complexity of personal perceptions and actions which turn ‘problematic experiences’ into self recog- nised symptoms and illnesses have been widely noted [ 19,221, as have the multiplicity of responses thereby generated [6,23]. In this process the interlocking nature of the vicissitudes of ordinary life and ideas of health are clearly evident. What Twaddle and Hessler call people’s “baseline measurement of health” is founded upon, indeed in effect is the routine and anticipated events and circumstances of the everyday personal world 141.

The essence of the qualities that illness is perceived to have by those subject to it-in particular its meaning for, and potential effects on personal am- bitions and objectives-are closely bound up with more generally valued qualities of life, and life goals. It is this process of subjectively placing the nature of illness in the temporal context of an individual life, or personal narrutice of illness as it will be described, which is of particular interest in this analysis. A great deal more attention has been paid in the investigation and mapping of both the physical courses of disease, and the social careers of sickness, than has been paid to the structure and content of personal narratives of illness. Thus the examination of personal narratives of illness as a means through which to address substantive theoretical issues in relation to changes in health status has been irregular and unsystematic. Although recorded personal accounts of illness- often in the form of life histories-can be found at almost all historical times they have generally been treated as anecdotal resources, rather than as data which can be employed more coherently in analyses. There have however, been a range of attempts to develop more formal modes of analysis based on the richness of qualitative data. The techniques of anal- ytic induction [24,25], and grounded theory (261 are in principle applicable to the formal understanding of personal narratives, although as Plummer points out analytic induction appears to be very similar in practice to traditional case study methods (3, p. 1271, and grounded theory implies a range of corroborative

documents which may not be readil! available with single life histories, or with personal narratives in whatever form they materialise. There are always likely to be fundamental difficulties in the process of interpreting such narratives, particularly life histones, using a sound and agreed theoretical paradigm [25]. But efforts to produce a more satisfactory framework are important, as Sacks indicates in his strictures on the narrow focus of biomedical (i.e. disease based) accounts which he suggests

. . tell us nothing about the individual and hir history: they convey nothing of the person. and the experience of the person, as he faces, and stuggles to sur\ile. his disease. There is no ‘subject’ in a narrow case history. To restore the human subject at the centre.. we must deepen a case history to a [personal] narrative or tale.. . (author’s emphasis) [27].

Sacks’ view endorses the “quiet catharsis of com- prehension” that Park [28] hope would be induced through the revelations of life histories. an approach which is particularly opposite to personal narratives of illness. In this respect the unique qualities of such accounts provide a clearly complementary source of rich data to that generated through other methods [3, p. 72). It seems in practice that the case study approach-differentiated from case histories by Glaser and Strauss through the ways in which theor- etical material is interposed to a greater degree, at a higher level, and with more systematisation [29]-is a way forward. Such an approach. based as it is on a theoretical reading of a coherently related set of cases, may in the last analysis be intuitively inductive. However, the ‘thick description’ [30] thus derived allows the formulation of articulate potentially generalisable propositions. In this analysis personal narratives of illness-in the form of life histories of people with multiple sclerosis-are treated as a collec- tion of cases from which a range of propositions can be extrapolated and investigated in a preliminary way.

Table 1 sets out the broad context of this study of personal narratives of illness. The three perspec- tives-centred on the ideas of disease. sickness and illness-are distinguished by their special foci; by their association with a particular kind of trajectory, and by the kind of negative health change from an assumed ‘normal’ pattern which is often deemed to occur in relation to each of them.

The relationship between disease. sickness and illness is clearly complex. Personal perceptions of illness, social perceptions of sickness and biomedical perceptions of disease appear to operate in different planes which are profoundly discrepant in their general mode of defining, accounting for and manag ing health problems, yet which are so closely congru- ent at some temporal points that it is difficult to analytically separate accounts which interweave the personal, the social and the biomedical.

Table 1. A taxonomy of accounts of changing health status

Source of attribution Designation Description of of health status traiectorv Focus of account

Imputed negative chance in health status

Self perception Social perception Biomedical perception

Illness Sickness Disease

Individual narrative Social career Physical course

Personal life goals Social status Medical diagnosis,

prognosis, therapy

Loss (bereavement) Handxap (stigma) Defici: (impairment)

Personal narratives, social careers and medical courses 1175

The communicative process through which medical diagnoses are disclosed to patients appears, in prin- ciple, to be a time of greater congruence between the trajectories of medical course, social career and per- sonal narrative. Here a biomedical designation and description of a disease (311 may be likely to coincide with the legitimation of a sickness [32], and be associated with what Williams has called ‘narrative reconstruction’ [lo] in which past illnesses and events are rearranged and reordered, precipitated by the personal meaning of the medical designation.

However both before and after this process of communication of the diagnosis the trajectories of the medical course, the social career and the personal narrative may be substantially different-for the reference points of the personal, social and the biomedical are at variance. In a biomedical context the reference points are the medical diagnosis of disease, the ascertainment of a prognosis and where possible the provision of a formally validated therapy-curative or managerial-to reduce or elim- inate deficits or impairments. In a social context the reference point is the social evaluation and attribu- tion of status and position by reference to the per- ceived nature and characteristics of sickness-and, for those who are thus designated ‘sick’, the amelior- ation of any negative social effects of handicap or stigma incurred. In a personal framework the con- cerns are to achieve valued life goals through the minimising of the effects (losses) of illness on those goals, which may or may not coincide with social stigma or handicap.

In relation to the early manifestations of chronic conditions, particularly a condition like multiple sclerosis, there are likely to be substantial discrepan- cies between the three trajectories. Initial symptoms may appear gradually, and only over long periods of time reach the threshold of visibility as potential illness and thereby become part of a personal narra- tive of illness [33]. The medical diagnosis of disease in itself is contingent on entry into the medical system which is likely to be delayed. Designations of sickness may occur at a variety of points as others-infor- mally or formally-make differing judgements about the social status of the person concerned [34]. In a personal narrative a sense of congruence may need to be developed-and a coherent story created-with plausible accounts for any disjunctions between per- ceived illness, others designation of sickness and medical perceptions of disease [35].

Post-diagnostically an even more complex situ- ation may arise when, as in the case of multiple sclerosis, the medical course of the disease is only realistically assessed on an aggregated population, rather than be easily predictable on an individual basis [36]. Both prognostically, and therapeutically there is little that can be biomedically offered to an individual patient. Although a ‘sickness career’ may have been clearly legitimated at the point of commu- nication of the diagnosis, the unpredictability of the medical course, and the varying social visibility of symptoms allows a very substantial and continuing latitude in social responses. Therefore personal narra- tives in this setting, geared as they are to valued personal goals, must be seen against the general prognostic and therapeutic impotence of scientific

S Sickness career D Dirsase course I Illness narratwe C Point of communication of the

diagnosis

Time

Fig. I. Narratives. careers and courses: a simple illustration of a possible life trajectory in relation to multiple sclerosis.

medicine, and an uncertain social career of sickness. There are thus a considerable range of potential

relationships between a physical course, a social career and a personal narrative centred around the intrusion of multiple sclerosis in the form of a disease, a sickness and an illness. One possible combination of these trajectories are illustrated in Fig. 1 which illustrates in a simple two dimensional way the kind of temporal patterns which might conceivably exist in relation to a condition like multiple sclerosis between the three trajectories of illness, sickness and disease.

In fact Fig. 1 substantially underestimates the complexity of the situation, for the pattern of the three trajectories is in effect three dimensional, and Fig. 1 does not allow for more than a single continu- ing summary position within each of the trajectories. A sickness career may contain a multiplicity of sometimes competing social designations [6]; a per- sonal narrative may likewise relate to different per- ceptions of a range of illness experiences [21], and biomedically the trajectory of one chronic disease may well be associated with that of other chronic diseases [40,41].

INTERPRETING PERSONAL NARRATIVES OF ILLNESS

In this analysis personal narratives as life stories- autobiographies-of people with chronic illness are considered as purposely constructed accounts of life trajectories incorporating illness experiences. These accounts resemble in their form, although not in their content, biomedical accounts of disease in which the determination of a diagnosis is the point to which, or away from which the medical narrative leads. Accounts of social careers of sickness have a similar structure, centred, as Roth argues, on a clear social endpoint which provides the focus towards which social interactions and evaluations build [16, pp. 94-95).

In considering the analysis of personal accounts of illness, the lengthy and complex history of narrative analysis must be acknowledged. From the work of Propp [39] onwards there have been a great many analyses which have sought to provide frameworks which could be used to interpret and explain the narrative structures of texts-whether written, spoken, performed or otherwise created [40]. This particular analysis is at the level of what Chatman describes as narrative macrostructure and typology of

1176 IAN ROBINSON

plot [40, p. 841. Such analyses seek to chart the overarching framework of a narrative, and to draw out its major form and focus. Chatman notes tradi- tionally how most of these attempts to examine narrative structure consider content, rather than ex- pression, and examine the changing position of the main protagonist [40, p. 851. From Aristotle’s classi- fication of fatal versus fortunate plots married with three types of main character-the good, the evil and the noble (in between good and evil) [41]; to Frye’s fourfold classification of major plot types--comedy, romance, tragedy and irony-satire [42]; to Crane’s threefold distinction between plots of changing thought and feeling 1431, there have been continuous attempts to locate the axes of narratives. It is difficult to locate the formal point of genesis of such typolo- gies which seem to be intuitively derived, and which depend in their interpretation on commonly under- stood codes and cultural norms in ordinary life. Nonetheless in the particular context of this analy- sis-the placing of personal narratives of illness in relation to sickness careers and medical courses- such codes and cultural norms provide a more satis- factory frame in which to pursue this approach. The remainder of the analysis develops a perspective centred on the macrostructure of personal narra- tives-despite its difficulties-organised around the approach of Gergen and Gergen [13, p. 261.

Working in the tradition of analysing narrative macrostructure, Gergen and Gergen argue that two crucial dimensions in personal narratives are co- herence and direction in relation to a specific goal or set of goals. Accounts “ . . . select and arrange events in such a way that the goal state is rendered more or less probable” [13, p. 271. The key is that all elements in the narrative relate to the valued goal state (co- herence), and the time frame in moving towards or away from the goal state (directionality). In develop- ing the narrative, causal linkages between one event and another are orchestrated and stressed. They further argue that there are three basic kinds of narrative structure based on the narrator’s personally evaluated movement in relation to their life goals. A progressive narrative moves towards the personally valued goal(s), and a regressive narrative moves away from such valued goal(s), and a stable narrative evaluatively sustains the same position in relation to the valued goals throughout the narrative sequence u31.

Although this kind of analysis runs a major risk of overestimating the degree to which personal narra- tives are insulated from social and cultural influ- ences-particularly in relation to ‘personally valued goals’-nonetheless Gergen and Gergen’s account of the temporal patterning of such narratives presents a useful model. The three patterns they describe are shown in Fig. 2.

Gergen and Gergen’s analysis stresses both the explicitly focussed and sequenced nature of the narra- tive, and its role as a text of life, to be read by the narrator or by others, embodying a particular image of events. Using a more determinedly sociological perspective Goffman notes that the construction of a personal image of the life course in such a form must be seen as a social apologia, in which the presentation is as a success story if a favourable view of the past

Progressive

3 I

Time -

Fig. 2. Progressive, regressive and stable narratives of illness. Source: adapted from Ref. [I 1, p. 271.

and future can be sustained, or as a sad story if this cannot be personally achieved and the cause of a failed life is distanced from individual blame [44]. In relation to personal narratives of illness Goffman’s argument seems particularly pertinent, although he may have substantially oversimplified the range of narrative strategies that may be drawn on in such accounts.

Building on Goffman’s point Gergen and Gergen further suggest that narratives can be profitably examined through the complex process of what they call dramatic engagement-the capacity to create, embody and convey feelings of drama or emotion [13]. Particular dramatic impetus may be created by changing the direction and slope of the narrative. The direction may switch in an account from a positive trajectory, to one which emphasises the burden of illness and the extent to which the possibility of achievement of personal goals is receding-essen- tially a story of loss and tragedy. The pace of a narrative may be accelerated by increasing its slope towards or away from the valued goal. Figure 3 indicates some possible narrative structures.

Indeed it is the heightened sense of drama drawing on collective and commonly understood images of illness and easily accessible to a wide audience which characterises personal narratives. Biomedical

narrative

Physical course

Time -

Fig. 3. Three patterned narratives of illness. Source: adapted from Ref. [II, p. 291.

Personal narratives. social careers and medical courses 1177

accounts in contrast draw on images available to a more restricted audience-the everyday and immedi- ate drama of the subject being replaced by the more distant and emotionally untaxing world of the object (451. The dramatic structure of personal narratives can be compared to that of conventional dramatic forms-amongst them tragedies, comedies, thrillers, romantic sagas-which they reflect, but also on which they draw [46]. In personal narratives of illness-par- ticularly those in which chronic illness plays a central part-the range and complexity of personally and socially valued goals; the differing personal resources available to meet those goals in the context of illness; the medical unpredictability and uncertainty sur- rounding the disease, and the range of social percep- tions of sickness, all allow considerable latitude for the development of a variety of narrative forms.

However, although the range of personal narrative forms may be wide, the context in which such ac- counts are created; the objectives associated with their creation and the audience(s) to whom they are addressed frame and mould their structure. Denzin’s analysis of the life stories of alcoholics points to the complex marriage between the personal and the social, and the individual and the universal by sug gesting that at one and the same time

Every life story is unique, yet representative of every other life story [47].

This notion of the ‘universal singular’ as Denzin later describes the situation of the recovering alco- holic, is also echoed in a different form in Williams’ recent analysis of letters sent to the Ankylosing Spondylitis Society in Britain, and responses to them [48]. In the two studies by Denzin and Williams the nature of the narrative accounts of individuals can be seen to be framed and conditioned-indeed on occa- sions orchestrated-by the audience to whom they are directed, and by whom they are seen and assessed. Although the stories are to a degree ‘self-stories’ to use Denzin’s term, in that they are in part addressed to the self and constitute a representation of the individual self, together they also constitute an accu- mulated and collective experience. To the extent that these ‘self-stories’ are socially visible in oral accounts, or available in written and circulated form, they form a body of images moulded by previous narratives, and conditioning future ones [48,49]. This moulding may occur in an indirect and subtle way, or as Pollack indicates in relation to verbal accounts of those with multiple sclerosis, may occur in direct social interac- tion through endorsement, dissent, irony or ridicule 150). The social moulding of ‘allowable’ narratives appears to be a key factor in influencing their form and style.

Analyses of the social context and meaning of autobiographical accounts of lives with illness- usually obtained through unstructured interviews- have been undertaken previously by Williams [lo], Bury [Sl], Charmaz [52] and others, although the ‘texts’ have been derived through dissimilar tech- niques to the accounts used in this study. More recently Bury [I I] has raised an objection to the generally overdetermined nature of such analyses. He argues that approaches such as those of Williams [IO], Strauss and Glaser [38] and Weiner [53] under-

estimate the degree to which the meaning of illness is emergent, is full of ambiguity and is constantly being negotiated. In many ways this point echoes far earlier concerns of the Chicago School in sociology in the 1920s and 1930s which Plummer describes as work- ing on the assumption that

Experience is a stream; a flow; social structures are seamless webs of crisscrossing negotiations; biographies are in a constant state of becoming and as they evolve so their subjective accounts of themselves evolve. There is no static conception of the world in interactionist throught but one in which themselves evolve. There is no static conception of the world in interactionist thought but one in which flux, emergence, precariousness and change are persistent facts at all levels of analysis 131.

Although this may be so from inside some inter- actionist perspectives, it conversely underplays the extent to which personal meanings are structured from the past into the future [64], and the extent to which illness becomes part of an already negotiated life. This fluid and pliable view of the role of illness may also overplay the extent to which personal meanings in the form of narratives are continually linked in a clear way to everyday events and circum- stances prompted by the changing physical course of disease. For example Scheibe notes how

The biographical aspect of life is not coterminus with the biological. Narrative constructions are the social derived and expressed product of repeated adventures and are laid over a life progression that often extends beyond its storied span [55].

A personal story may be ended before a life has physically finished. For some people with chronic disease such a situation has occurred. There may still be the struggle for physical survival, yet for all intents and purposes the main story of life has ended. For others the opposite situation may occur where their story is one which, for them, transcends the advent of physical death. Therefore although it is important not to set up personal narratives as once and for all definitive personal accounts of lives, they stand as significant interpretations which add substantially to knowledge of the effects and meaning of illness. In Barthes’ terms the author has died and the text has life of its own [56].

ANALYSING LIFE STORIES OF PEOPLE WTTH MULTIPLE SCLEROSIS

The derivation of the life stories used in this anal- ysis is a matter of some importance for their analysis. They were requested from members of a national register of members of a voluntary organisation-a self-help group-in Britain for people with multiple sclerosis (Action for Research into Multiple Sclero- sis). Apart from the source of the request which was clearly a research unit concerned with multiple sclero- sis, the injunction to potential authors on what, how, or how much to write was as undirected as possible commensurate with encouraging response. Thus people were enjoined to write their life stories inclu- ding anything in their lives-events, experiences or feelings-which was important to them. It was indi- cated that the stories could be as long or as short as the authors wished-they varied in length from one

1178 IAN ROBINSON

paragraph to several hundred pages of text-and the object was not to be judgemental about style-an especially important issue when many of those re- sponding professed concern about their formal written skills. Although there was no specific request for information-medical, social or personal-about the disease, its effects, or perceptions about its role, it would be reasonable to conclude that such accounts should be categorised as ‘limited life documents’ [3, p. 1081 if Plummer’s terms are employed, because they had been precipitated by events following a medical diagnosis of multiple sclerosis-including joining a self-help group concerned with people with the disease. Nonetheless as far as the authors of the accounts were concerned the request that prompted their texts was an invitation to write their life story- the term which is used in this study in referring to their accounts.

Four-hundred and fifty life stories were obtained over a period of 12 months in 1986 and constitute the resource for this particular analysis. After an initial survey of responses, a random sample of 50 life stories were used as the basis for this analysis. The aim is to offer an interpretation of a range of overall forms-‘macrostructures’-through which the expe- riences and events of personal lives may be recounted, and to suggest ways in which such an analysis adds to an understanding of illness, and its relationship to sickness and disease.

Even allowing for the diversity of narrative forms; allowing for the multiplicity of narratives which may be simultaneously present; and allowing for the pos- sible (perhaps probable) reconstruction of narrative interpretations of lives with illness over time, it is the contention here that the presence of Denzin’s ‘univer- sal singular’ is sufficiently visible in accounts of people with multiple sclerosis to enable this broad analysis to be undertaken. The first component of this analysis is to undertake a preliminary classification of the accounts following Gergen and Gergen’s frame- work. This framework would suggest that there are several basic ‘macrostructures’, which may be em- ployed in various different ways, with varying degrees of what Gergen and Gergen call ‘dramatic engage- ment’. Essentially the sequence and manner in which the narrative can be considered to give rise to three general evaluative processes-stable, progressive or regressive in Gergen and Gergen’s terms-is the guide to its overall shape and macrostructure.

Stable personal narratives of ilhess are those which are most ‘unstory like’ (less engaging) in the sense that they provide no differentiated dramatic cues to take the ‘ordinary’ reader through the text. Lives are narratively constructed as a series of events, or experiences, located in literal, rather than personal or social time, in which ‘valued personal goals’ are not easily ascertainable, and in which the linkage between events and experiences is understated and appears to be offered to the reader for interpretation. Their resemblance to medical case histories suggests that the code and culture of biomedicine is the key to unlock their evaluative meaning. Whatever else is occurring narratively, there is an assumption of an ‘implicit reader’ [13]-in essence a biomedical inter- preter and guide. Examples of such accounts are considered below.

What Gergen and Gergen call progressive personal narratives of ilfness may follow many different narra- tive paths. However, their essence is that of a positive construction of (putatively negative) events and ex- periences in terms of personal goals-such as occupa- tional careers or personal relationships-constituted either prior to the onset of the perceived illness, or (continuously) reconstituted following its advent. Such progressive and positive narratives appear to be far more common than is anticipated socially and biomedically, precisely because the personal trajec- tory of illness is not highly correlated with the physical course of disease [57]. The most dramatic narratives of this kind are those which invoke images of heroism or courage-at the same time both univer- sal and individual traits, becoming socially visible as the downward and physically destructive medical course of the disease is compensated for by the sustained, even reinvigorated personal capacity to reach valued life goals. In a different way some progressive narratives can also be read as detective stories, seeking to unravel the personal mystery of the illness. Such detective stories, with additional compo- nents of drama and suspense, may be developed through the prediagnostic period, and continue after- wards as triggering or fundamental causes of symp- toms are personally pursued and potential personal remedies to them are derived from this pursuit. Progressive narratives of illness as comedies appear to be less frequent, and then are developed more in the form of what Crane would note as an ironic- satirical style [43]. Nonetheless in both the detective story and comic narratives there is in essence a reassertion of personal control, through different means, over the biomedical trajectory of the con- dition and personal life itself.

Regressive personal narratives of illness are those which appear to be most commonly expected in biomedical settings, and indeed in other social con- texts. Regressive narratives are those which present a story of a continual and increasing discrepancy be- tween ‘valued personal goals’ and the possibility of their attainment, with illness and related events and experiences elaborating and accelerating this dis- crepancy. There is a commonsense rationale for the expectation that such accounts will constitute the majority of narratives of illness. It is based on the anticipated linear relationship between the frequently debilitating biomedical course of chronic disease and the parallel trajectory of the personal narrative-as the physical course of the disease accelerates, the personal narrative is perceived to echo this decline.

However, such narratives in their most extreme form-tragedies-appear to be relatively uncommon amongst the life stories considered here. Tragedies as narratives are forged out of the contrast between the rapidity with which valued personal goals could be considered as being progressively attained prior to the perceived onset of illness or its effects, and the rapidity with which regression from those goals pro- ceeds after those points. A sad narrative is one in which the regressive slope from valued personal goals is slower than that of a tragedy. It is also continuous in that the regressive slope precedes the perception of illness and runs inexorably through it. In the case of both tragic and sad personal narratives of illness the

Personal narratives, social careers and medical courses 1179

narrator is depicted as out of control of the illness, and by implication out of control of their personal life itself.

The patterning of many of the life stories of those with multiple sclerosis involves a considerably more sophisticated narrative structures than the three forms discussed here. Nonetheless the three broad forms provide an useful initial framework with which to explore the life stories. A broad classification of the 50 accounts on the basis of these three narrative forms indicates that 10 of the accounts (20%) can be described as stable narratives; 26 (52%) can be described as positive narratives; 5 (10%) can be described as regressive narratives, and the remain- ing 9 (18%) cannot be allocated to any one form. This analysis focusses especially on those accounts located in the three narrative forms. Two particular features of this classification may appear surprising. First, the degree to which the majority of accounts have been clearly attributed to one of the narrative forms, and second the number of accounts considered to exhibit stable and progressive compared to those exhibiting regressive narratives.

The attribution of accounts to the three particular narrative forms can be achieved in the majority of cases because of their relatively unified thematic structure. As Williams indicates in his discussion of ‘narrative reconstruction’ [IO], past events and ex- periences in narratives are generally reconstituted and linked together in a form which leads to, explains and is immediately conditioned by the present. The narra- tive drive of the text, particularly in so far as it was written in the knowledge that it was commissioned by, and would be read by a particular audience, depends for its successful ‘reading’ on clear thematic recognition by others. Stable narratives are generally less problematic to attribute for reasons which will be evident in the discussion below. Progressive narra- tives which constitute the majority of accounts con- sidered here can be considered to form a particular genre of stories about living with multiple sclerosis in which meeting the challenge of, and overcoming the physical manifestations of the disease is a key element. Regressive narratives-in a sense the narra- tives of personal failure to manage lives with illness- are, viewed in this context, understandably less common despite the assumptions which underpin analyses such as that of Charmaz [52].

The substantial role of progressive narratives of lives with multiple sclerosis in this analysis could be anticipated from studies elaborating the constellation of values, attitudes and beliefs which appear to be associated with personal approaches to the disease. In the early work of Cunningham [34], Miles [58], Matson and Brooks [59] and the later analyses of Pollack [50], Matson and Brooks [60], Stewart and Sullivan [35] and Robinson [33], a key feature is the degree to which people with the disease perceive continuingly positive approaches to the intrusion of multiple sclerosis in their lives to be the key to managing its physical, personal and social effects. Pollack in particular documents the extent to which a range of social sanctions may operate on the accounts of those who do not conform to group expectations of ‘fighting’ the disease in a positive way [50]. This process can be seen as equivalent to that

noted by Denzin in the case of alcoholics, although he indicates that the degree of social control over the accounts is far more subtle [47]. Through the mould- ing of personal accounts into this progressive narra- tive a sense of transcendence over, and in the end a sense of group, as well as personal control of the biomedical trajectory of the disease can be sought. Progressive narratives can therefore be seen to he at the heart of the experience of living with multiple sclerosis.

LIFE STORIES OF PEOPLE WITH MULTIPLE SCLEROSIS AS PERSONAL NARRATIVES

A further and more detailed analysis of progressive narratives indicates how a range of narrative patterns within this general form relate to positive views of the self, to the assertion of personal control over the disease, and, through the social visibility of the accounts, to the reinforcement of collective values about managing the challenge of the disease. The most dramatically engaging progressive narratives are those which can be designated heroic. This narra- tive is constructed round a positive and clear progres- sion towards valued life goals preceding illness. That progresson rather than being overturned by the po- tentially personally and socially damaging effects of the illness, is enhanced by special, and by definition heroic actions, behaviours or attitudes. The narrative effect is achieved for its audience through the way in which the personal account appears to be proceeding in an equal and opposite direction to the declining medical course of the disease. For implicirly heroic narratives the ‘heroism’ in the text is made more pronounced by the ‘ordinary’ success of life preceding the illness. The ‘ordinary and unexpected’ hero (or heroine) is one who stands for an idealised response of all others to the affliction of serious illness. Such implicitly heroic accounts appear to be quite fre- quently used to reinforce the positive group values of those with multiple sclerosis [50], although in this form they are relatively uncommon in the group of life stories studied here. In terms of the definition adopted above, six accounts (out of a total 26 deemed to be progressive narratives) could be explicitly read in this way. It is important to note that such narra- tives embody the idea of heroism through the par- ticular style in which they are written. A modest, self effacing and understated narrative is anticipated for the reinforcement of group values. The narrators may not recognise their own extraordinary position, and the way that their narrative of life can be read. Their heroism to themselves has become as ordinary mode of managing and reflecting on their situation, as it is extraordinary to others. Indeed the reason it is ordin- ary to them is that they do not feel themselves facing the choice that others see them taking between being heroic, and taking any other less socially and person- ally valid alternative.

In an implicitly heroic but self effacing style the following life story echoes some of these themes. After recounting her rapid and successful progression through school and into the world of work, a young narrator then indicates in her life story how quite suddenly she had dramatic symptoms of multiple sclerosis, and a range of other illnesses, which left her

1180 IAN ROBINSON

career and her life in great difficulties. She then slowly regained some physical mobility and, in this extract, reflects on her past:

. . . I have now had MS for 10 years. It seems impossible that it has been so long. It has helped me in a way, for when I was O.K. I never got round to doing anything in particular, as I could always say I could do that anytime. Now I am disabled by MS I find that everything is a challenge and I do my best to achieve it. I have learned to drive. I had a go [at the driving test] and passed. Not long after I was able to get a car of my own. This made me feel good. I managed to get a part-time job in the mornings, it was nice to be able to go to work again. I have joined an archery club, I go sailing and do yoga and have just started horse riding. I am also the treasurer of the Young Wives and Women’s Fellowship at Church. I adore cooking and my sister, my friend and myself have joined a craft circle doing home baking. I find it takes a lot out of me but as long as I take my time, I am sure 1 will get there in the end. . .

In the rest of the narrative she concentrates further on the things she is able to do, and the personal goals she can achieve with little reference to the multiple sclerosis itself. The achievements in her terms must be read as great not only relative to her situation now, but also to the situation before the onset of her illness. It is not so much that there are no personal losses from the illness, but that they are compensated for, indeed completely overridden by gains in other areas of life. Another different kind of account emphasises the positive aspects of having MS, and is not only modest in narrative style but the author also emphasises a lack of self-concern for herself in her writing as she concerns herself with the problems of others. After documenting a similar story to that given by the author above of an early promising career cut short the narrator writes:

. . . I accept MS as my lot in life just like the asthma and the sore backs. I know that there are people with MS worse than me. That does not make me feel any better but it does make me feel sympathetic to them and glad I am not as bad as they.. . . Now I know that I have MS I am much more tolerant and have become less tense. I do not worry if I cannot do anything-and there are quite a few things I cannot do. I think I am getting on fine. I am living at peace with it [MS]. I think I am a better person. In a way my life is richer than ever it was. I am surrounded by love, care and attention by my husband, family, neighbours and friends. At times I think my little burden is less than theirs and I wish I could lessen it for them. I do not want to make demands on them. I have no complaints about anything, in fact I often think I do not deserve the care that I have got.

The self-effacing quality of these narratives of illness, which emphasise both the particular and personal possibilities of dealing with a life with multiple sclerosis implicitly establish models for others, although this model which appears in ac- counts to ‘sidestep’ or ignore the effects of the disease is complemented by other related narratives which confront the disease in a more spectacular way. There is another strategy that is frequently enumerated of fighting the disease as the main-perhaps the only- course of action open to those exposed to it (331. Such a strategy has been reported in a number of previous studies [34,35]. Such narratives are more common than those designated implicit heroic narratives above-l 1 of the 26 progressive narratives could be deemed to fall into this category. An extract from an

account like the following emphasises the determin- ation in which the heroic qualities are open and combative-an explicitly heroic narrative, rather than one which is implicit and understated. This is the summary paragraph of the account:

. I have become a very determined person and a very positive thinker. I do not allow anything to get me down now and I am determined not to let myself go. I have also started to go out and meet new people and begin my life again. I am determined that no-one will think there is anything wrong with me. I have also decided to spend a lot of time in tinding out what I could do for myself. I was not going to sit at home and wait for something to happen. I also released that I was on my own with this problem but I am going to tight it even on my own now.

Inherently there is of course a contradiction be- tween the modest self effacing ‘ordinary’ hero or heroine of an encounter with illness, and the narrative of a battle hardened and determined fighter against multiple sclerosis. In the latter case the total personal preoccupation with the conquest of the condition may be seen biomedically as an insular. unhelpful and sometimes self-destructive strategy [33], although conversely there is considerable evidence from the accounts studied here, and previous studies that others with the condition may reinforce and encour- age this strategy [50].

Other narratives which progress towards valued life goals in the face of illness take the form of what might be called detective stories. In these accounts life, particularly with illness, is perceived as a mys- tery-at points an adventure-in which the skills of the narrator as detective are made explicit. Many narratives of those with multiple sclerosis have a subtheme of this kind particularly in the often lengthy period between the onset of symptoms considered as illness, and the communication of a formal medical diagnosis [35,61]. However, other accounts are written almost entirely in this form-5 of the 26 progressive accounts could be considered as detective stories. Apart from other motivating factors to con- tinue such detective work, a prime factor in continu- ing such a narrative stance is the absence of a clear scientific aetiology, or therapy for the disease [62]. The ‘detective’ narrative is essentially concerned with the mystery ‘Why me?‘, and the immediately follow- ing question of ‘What can I do about it?’ [63]

The investigative quest for an answer-finding the villain-constitutes in itself a positive narrative, whether the personal mystery is solved or not. In this search for a persona1 cause, and for a personal solution there is nothing that is left untouched by the detective work. Perhaps this is what is often so troubling to physicians about such people’s investiga- tive actions, in relation to the formally constrained methods and findings of medical science. As Robinson and Hawpe note in their distinction be- tween narrative and scientific thinking:

Both are attempts to organise and give meaning to human experience, to explain the guide problem solving. But the products of these two modes of thought, story. and principle respectively are quite distinct. The product of scientific thinking is a principle or law.. testable only by further formal scientific activity. The product of narrative though is context-bound, concrete, and testable through ordinary interpersonal checking [64].

Personal narratives, social careers and medical courses 1181

Some detective stories resemble in their form the ‘detached documentary’ style noted in the discussion of stable narratives earlier in that the self is treated as an experimental object, in which strategems and potential therapies are systematically filtered through the searching gaze of personal en- quiry. Each therapy is tried in turn for signs of its personal efficacy. Despite the observations of Robinson and Hawpe it does appear in these cases that something like a lay version of scientific investi- gation is being conducted [65] in the form of a one person clinical trial. The patient is narratively acting as their own doctor. Nonetheless in so far as the evidence of personal efficacy is different from, and broader than that which would be employed in a strict biomedical setting, the narrative is in Robinson and Hawpe’s terms ‘context-bound’. A brief extract from a life story shows such a style with inflections of personal control through the assessment itself:

September C--Stomach normal, feeling good and healthy generally since being on my diet. September 8-I took 2 Colchecine today. My legs are beginning to feel agile, and my feet are warmer generally- could be the results of diet and exercise after a few months. It seems a little too soon for the Efamol 500 and Colchecine to be reacting but it is possible. My eyes are better as well. I’m feeling less depressed. These are all symptoms of allergies--I would guess that it is the diet that is relieving them.

vhere then follows an account over many weeks of a similar assessment of a wide range of therapies.]

More dramatic kinds of detective story are those which involve considerable danger, as well as the promise-at least narratively-of great success in solving the mystery. Those who are explorers, as well as detectives in this vein, may be continuing a clear pattern which evolved before the advent of the chronic illness. One such narrator after documenting an adventurous life prior to the perceived onset of multiple sclerosis indicated how the search for a cure took him to Miami and Mexico to use snake venom as a possible remedy for his condition:

I saw this programme on television about snake venom and multiple sclerosis and arthritis. I wasted no time and 2 weeks later I went by air with my closest friend who pushed me about [in a wheelchair] to Miami. I could only afford 6 rather than 12 days of the treatment in the clinic. The doctor asked me questions, and then his nurse stuck pads all over my body, then we had a readout-and she took an armful of blood. Then I was ready for the venom.. . then next day I went to the clinic where I had another shot of venom, and was given some physio-I don’t like physios because they make you do what you don’t want to do.

rhe lengthy text continues to interpolate a narrative of the treatment with a series of adventures in Miami and Mexico similar in style, but only tangentially related in content to the administration of the venom.]

This particular narrative, in relation to its apparent central goal-the cure of multiple sclerosis, has as its setting and form an engaging adventure story, in which the personal loss appears to be the absence of a cure for the illness which is continually compen- sated for by the power and drive of the story. Inserted in such stories are elements of suspense. Is it possible to find the resources to try the therapies? Will they be effective? There may also be comedy-and irony-as

unexpected situations are managed in unusual or bizarre circumstances-beyond the narrator’s normal personal experience, or outside their normal social settings.

The remaining four progressive narratives of people with multiple sclerosis use a narrative frame of reference centred on the intervention of the super- natural. The narrative may embrace the intervention of a malevolent supernatural force which is being engaged in a personal struggle as described in Burnfield’s account of ‘attempting to conquer the devil’ (his multiple sclerosis) in a widely read text on managing multiple sclerosis by someone with the disease [66]. The narrative may embrace the discovery of positive divine intervention, in which God may not only prove to be an ally after the onset of the disease, but in some cases be perceived as offering salvation through its presence. The person, and the illness is narratively transformed by the divine intervention. The illness-potential death-becomes life. Losses are reconfigured into gains. A very explicit example of such a narrative is given by a young wife who summarises her experience as follows:

In the last 18 months I have found real peace of mind, a wonderful joy and a continuing deep contentment. I have discovered that life as a Christian is exciting. I nould not change this for my previous life style when I had full physical health but was somehow empty inside. not knowing what to believe in or what philosophy of life I should have. In many ways I am glad to have weak legs because it makes me rely on God and I can use His strength. I feel as St Paul said, that “When I am weak, then I am strong”. I have had some wonderful and miraculous answers to prayer. When I look back I can see how He helped and guided me.

Narratives which embody an apparently positive and optimistic approach to the presence of the disease (although not usually as clearly optimistic as the account above) seem particularly-indeed un- usually-common. In fact the prevalence of these positive narratives seems to have led to widespread and dubious imputations of explicitly psychiatric symptoms like euphoria, or asognosia (indifference to disability) to those offering such accounts. A recent analysis suggests that the reasons for the prevalence of such accounts, and the attributions which appear to follow them lie far more in the social processes associated with the management of multiple sclerosis, then they do in any physical or psychiatric manifest- ations of disorder [67].

In discussing the structure of stable narratives of illness which can be seen in 10 of the 50 life stories considered here the relationship between the narrator and the audience appears particularly important. Although no explicit request was made for inform- ation which might approximate to a medical case history-which it will be argued many of these stable narratives resemble-it appears that the initial re- quest may have been ‘read’ in this way by some who responded by writing their life stories. In the least dramatically engaged form they might be described as a detached documentary narrative. In such written life stories, which may be very brief in length, the narra- tor appears to document the events of life as though they had happened to a third party. The account is presented as an emotionally flat catalogue. A dic- tionary of events, in which all that befalls the writer

1182 IAN ROFIINS~N

from childhood, especially symptoms translated into illness, sickness or disease, is treated (in the narrative) as part of a seamless, emotionally monotone, web of life. An example quoted verbatim where the narrator is male is as follows:

1934-Born 1938-Started school 1947-Had acute Nephritis. spent 16 weeks in X hospital,

by this time I had all childhood illnesses 1951-Left school and started work in a clerical job 1952-Joined the army on national service 1954-Demobbed from the army to resume clerical career 1956-I was married 1957-I changed jobs to become a computer programmer 1962-Elder son was born 1965--Younger son was born 1977-Problems with optic nerve in my left eye 1981-Away from work as I couldn’t hold a pen or write

properly. MS was diagnosed 1983-Started course of experimental drugs at X hospital 1983-Still not at work, I took early retirement. Apart from the illness in 1947 my general state of health has been good.

In such an account there appears to be little or no attempt in the narrative to internally evaluate or comment on the meaning of each event in relation to personal life goals; events negative or positive salience are treated similarly, and the narrative gradient from past through present to the future is flattened. In many respects such accounts resemble, indeed in more detailed forms could be mistaken for medical case histories. This matter-of-fact approach to per- sonal history, and the sequence of illness transforms subjective symptoms into objective signs, and is in effect an account of the physical course of multiple sclerosis, its preceding events and general demo- graphic information as relating to a patient (the narrator).

The narrative style in this case is one which is clearly influenced by what is assumed to be a mode of communication appropriate to a medical setting in which the ‘facts’ of the case are constructed and organised in particular ways. The text appears as though it may be one of series of case histories- essentially clinical raw material. Another life story indicates this point in which the literal chronology of events is again the organising framework:

Place and date of birth: X town, 1936 1937-Received two smallpox vaccinations which did not

‘take’ 1937-Father developed TB, was in close contact for one

year 1938-Skin test indicated TB but X-ray was negative 1938-Developed spastic walk which responded to treat-

ment with calcium pills 1941+MeasIes, whooping cough, chicken pox, and

much tonsillitis. Tonsils removed in 1944 1946-Mumps 1949-Poliomyelitis. In hospital 9 months, convalescing 115

months 1962-Smallpox vaccination on right thigh-it ‘took’ 1963-First symptoms of MS developed in right leg 1966MS was officially diagnosed and the patient informed 1966-78-Periodic treatment with ACTH to stem attacks 1978-Began feeling run down and suffered recurring flu

symptoms 1980-Developed pronounced nocturnal cough, together

with hot feelings

I981-TB diagnosed and treatment began. Severe allergy to Isoniazid developed after 4 weeks treatment with Rifampicin, Ethambutol and Isoniazid. Symptoms were severe headache, very high temperature and general weakness. Isoniazid was discontinued and the treatment continued for one year on Ethambutol and Rifampicin. During this period mobility de- creased steadily and was eventually restricted to a wheelchair at the beginning of 1983

1982-Started physiotherapy and was able to restore some feeling and activity to left leg. Could now walk with assistance

1984--Developed bouts of acute depression which inter- fered with ability to walk. Have not been able to walk since bad attack of flu in April 1985.

A short extract from a further narrative, in this case of substantial length, illustrates the general argument, although the implicit evaluative stance is rather more evident than in the previous account:

July 1981-Visited Dr X with numbness and tingling on the front of my legs and feet. An appointment was made with a specialist.

October 1981-The numbness was continuing and had reached my stomach. My walking was beginning to be a problem.

November 1981-Saw Dr X again as symptoms worsen- ing-the ends of my fingers were tingling, and I was stumbling and my joints are very stiff.

December 1981-A visit to the specialist who put me in hospital for 2 days for blood tests and a lumbar puncture. -At this time I had the following symptoms: I was unsteady and had lack of control when walking; I had tingling on my skin; weak leg muscles and a stiff feeling when trying to move in the mornings; difficulty starting trying to move in the mornings; difficulty starting urine flow; deterioration in memory speed; difficult in focussing my eyes. On reflecting on my case, I realised in my job as an X engineer that every symptom can be important.

January 1982-I was told I had MS on a return visit to the specialist, who informed me that the tests together with my damaged optical nerve and the other symptoms would suggest that I had MS-although no tests were 100% certain.

[The remainder of the narrative, too lengthy to include here, is concerned with the recounting of the occurrence or reoccurrence of symptoms, visits to the doctor enumerating symptoms, and personally detached reports of the effect of drugs or other remedies which had been medically pre- scribed. It concludes by indicating the latest effects of one of the drugs being taken.]

This account, also written by a man, can be seen as having been ‘narratively smoothed’ in Spence’s terminology [68]. This process which Spence articu- lates at some length in relation to how psychoanalytic case histories are selectively constructed by the anai- yst to conform to an expected code, may be used to describe how narrators in these life histories have themselves ‘pre-smoothed’ their accounts to conform to their own view of a clinical code. However, paradoxically, despite what has been indicated about the lack of evaluative commentary, the flatness of the account itself contrasted with what a reader might consider to be powerful and salient events can exert a substantial dramatic effect. Personally underplay- ing, even apparently narratively disregarding a patently disturbing series of events, can lead to the construction of an intentionally (or unintentionally) heroic or tragic narrative. In the accounts themselves,

Personal narratives, social careers and medical courses 1183

at the end of the story, there may occur some explicit acknowledgement of the heroism displayed or the tragedy experienced. This is a twist in the tale of the prevailing narrative form, or indeed a narrative within a narrative. In these circumstances an under- lying personal agenda breaks through ‘the case his- tory’. For example after writing an account very similar in style to that used first in this section a woman notes:

I used to enjoy dancing, gardening and general ‘busyness’. I now sit down all day either in a chair, wheelchair or motor car and I am fed up with having to ask people to do things for me and pass things to me.. . . I just don’t dare think a lot about the future--long term.

However, in general the reported trajectory of illness in such narratives has become locked into the perceived biomedical trajectory of the disease. A sickness career, in so far as it is acknowledged, is that which is related to the stages through which medical legitimation was conferred. The congruence of this kind of personal narrative with the perceived bio- medical trajectory of the disease, is such that the community of interests between the doctor and the patient appears unequivocal and clear. Both illness and disease are narratively placed firmly in the dom- ain of medicine to diagnose and treat. The thrust of the narrative is in effect to disown personal responsi- bility for illness, and at the same time to place a very considerable onus on the clinician to act for, as well as on behalf of the patient-for it is in a perceived version of the clinician’s code in which the story is written. However, in relation to chronic illness such an implicit proposition and expectation may be ex- tremely problematic in the absence of a medical cure, or even substantial amelioration of symptoms for a chronic disease such as multiple sclerosis. In this case the stable ‘flat’ narrative seems likely in the longer terms to be inherently unsustainable, unless it is uncreasingly routinely employed (even further de- tached from personal evaluation thus becoming a strictly instrumental account), or it functions as a kind of narrative investment in future medical sup- port, rather than in current effective clinical care.

Ideas of ‘biographical disruption’ [51] or the ‘fundamental loss of self’ [52] suggest that what Gergen and Gergen describe as regressive narratives should be commonplace in accounts of those with chronic illness. However, it has already been indi- cated in this analysis that accounts in such a form are relatively-perhaps in view of prior expectations remarkably-uncommon. The most frequently ex- pected narrative in relation to life stories centred on a chronic condition is that which is tragic. In formal terms a tragedy can be narratively considered as a story in which the progressive achievement of life goals, is interrupted and dramatically reversed fol- lowing the onset of the chronic illness. The greater the positive slope of achievement and the more sudden the reverse the greater the tragedy. Such a situation is of particular relevance to people with multiple sclerosis whose symptoms and medical diagnosis frequently occur in early adulthood when the antici- pated narrative would be a rapid and continuously positive climb to personally and socially valued life goals-in relation to occupational careers, and per-

sonal and family relationships. Charmaz expresses the effects of this cycle of events thus:

Serious chronic illness results in spiralling consequences such as the loss of productive function, financial crises, family strain, stigma, and a restricted existence. Over time many debilitated chronically ill persons become dependent and immobilised. As they suffer losses of self from the consequences of chronic illness and experience diminished control over their lives and their futures, affected individuals commonly not only lose self-esteem, but even self-identity. Hence suffering such losses results in a diminished self [52].

However, there appear to be only 5 out of 50 accounts considered here which might be clearly considered to embody such a narrative. This does not mean that problematic events do not regularly occur, but that in most of the accounts they are perceived and narrated far more positively than Charmaz’ analysis implies. In a small number of accounts there is however a tragic narrative. In such accounts there is a gradual realisation that symptoms are not be- nignly explicable within an existing life style which thus begins an increasingly tragic narrative. More and more symptoms become visible and the direction of the narrative dramatically changes from positive to negative, and the slope of the changed narrative becomes steeper. Existing employment, and future career opportunities are threatened, relationships with others dramatically change, and a range of personal goals are seriously jeopardised.

In the following account some of these tragic elements are clearly present:

Nine years ago to the month I found out that I had got MS after going into the hospital for tests. I didn’t know what it was, I thought people in their sixties got it. Then my husband said to me it was a serious complaint. After we had moved soon after, my husband, my son and me to X. . . . I found he was messing around with this woman, I told him to go and live with her-he did.. . I was working for a solicitor as a secretary, but I had to tell them in the end of my complaint. It didn’t matter so they said, but after a while they made me redundant . . . so now I am one of the unemployed and I hate it. I’ve tried twice to get mobility allowance but have been refused. Come November if I haven’t got a job the car will have to go.. . . 1 can’t get a thing. . . . Life is cruel really, its a job I want now. I wish I had the petrol money I used for going to interviews. . I don’t want to get any worse, if there is no cure to be found, I’d rather stay as I am.

The tragic narrative poses in a particularly poignant way not only the contrast between the problematic present and a more positive past, but between the problematic present and the tragic future. In this latter juxtaposition the assumed future sickness career, and the future medical course are incorporated in the story in a way which serves to compound the personal tragedy. In its most extreme from, such a narrative comes close to the situation mentioned by Scheibe [55], where the story is com- plete before the life is physically finished. It is in this sense a death in life.

A more subdued, but relatively uncommon narra- tive in this analysis is one which might be called a sad narrative-three out of the five regressive narratives fall into this category. Such narratives have a con- tinuously negative slope away from life goals, per- haps accelerating as they progress. In these accounts

1184 IAN ROFIIN~ON

there never appears to be any perceived hope of substantial progress towards valued life goals. Or if there was any marginal progress the narrative quickly reverts to a negative slope. There are those accounts which trace lives back to early childhood in which personal goals have always-at least retrospec- tively-been constrained by an array of perceived symptoms and illnesses of which multiple sclerosis merely forms the continuation. In these accounts life goals have been conditioned, perhaps even been determined by such perceptions.

The following originally lengthy narrative, from which excerpts are taken, echoes this general pattern.

I was born in X. . . My mother had such a difficult time she did not have any more children. Apparently I was very difficult to rear, had rickets, and excema . the family tell me that it was a miracle I survived.. . When I was 3 I had bronchial pneumonia, and kept catching bronchitis all through my childhood. My father had paratyphoid which was not diagnosed till later, and he had a series of operations which made him unwell.. . I had to go to boarding school during the war, I hated it, and was ill a lot of the time.. . I did manage in the end to get to college and to a diploma in domestic science. . . I got my first job, then I had to leave it because my father became ill and I had to look after him . .

I lived at home with either my father or mother being ill. I decided I had to leave because I was becoming ill, and did, but then my mother developed nephrosis in both her kidneys.. . I went back to look after her and after a while had an old fashioned nervous breakdown.. . I nursed her till she died.. . . Sometime after I kept having peculiar symptoms but I thought it was probably all the stress I had been under.. gradually I began to trip up and have some nasty falls.. . . It was just diagnosed as a damaged nerve in my leg. Then surprise! I married my solicitor, we had known each other for 25 years. Then my husband insisted that I get medical advice, and later he was told I had MS, 4 months after we were married.. .

[She then goes on to say how she had been getting worse, and that her husband died suddenly.]

Such narratives are sad accounts in Goffman’s terms, of a life overdetermined by illness and other events which narrow life goals to what are in the end modest ones-and even those are hardly obtainable. In these circumstances multiple sclerosis, or other chronic disease, is not an unexpected occurrence for it forms part of a life peppered with ‘problematic experiences’ outside the narrator’s control. In such accounts the attribution of sickness by others, and the corresponding sickness career, is part of such an externally initiated sequence of events which is almost a logical corollary of the patterns of illness. Failure to obtain an early diagnosis of multiple sclerosis is perceived, not so much as a serious failure of the medical system to deliver its hoped for support, but as a further set of ‘problematic experiences’ to be managed. In such accounts, small in number though they are in this analysis, it is almost as if the person accepted the physical course of disease as a given from which illness and sickness was merely a corol- lary. The diagnosis of multiple sclerosis is a matter of fact event which places the three trajectories together in a ‘sensible’ order, but in such narratives this is part of the ordinary life. It is a life not easily subject to personal control. To a degree the narrative structure

of such an argument is stable-the persons position in relation to the narrative is continuous. Therefore such accounts are in a real sense unexceptional, they are undramatic at one level because the analysis is expected, on the other hand the accretion of sad events can be cumulatively powerful. In Gergen and Gergen’s terms the slope of the narrrative curve is continuous and undirectional. Nothing in the se- quence of events is either a surprise to the narrator, or to the reader. It appears that the self, others and clinicians are all operating within an orderly but regressive trajectory of life. The losses stemming from this process are considered inevitable, and the be- reavement an almost logical consequence of the circumstances.

In summary, these three narrative patterns con- sidered in this section provide one useful means of analysing personal accounts of illness in a relatively systematic, although still largely intuitive way. The analysis has suggested, at least in the case of accounts of people with multiple sclerosis, that personal narra- tives are likely to be written in a form which empha- sises positive perceptions of lives with the disease more frequently than a number of previous analyses have indicated. The role of such accounts in creating and reinforcing ways of understanding and managing the nature and effects of the condition has also been indicated. This analysis can be taken further either by developing and applying more differentiated and sequenced ‘macrostructures’ of the narratives, or by following on from the analytical procedures of Propp [39] and others who have constructed formalised means of measuring the thermatic components of narratives which build a good (i.e. dramatically en- gaging) story. Such developments, although outside the usual range of technical tools of either physicians or most social scientists, would add to an understand- ing of the person and their illness in a way which would not otherwise be possible. Such an understand- ing is additionally significant for the practice of medicine. For consultations, diagnoses, treatments and other contacts with the health care system are placed by the individual within their narrative of life-their life story. Increasingly problematic, per- haps apparently intractable issues for physicians such as non-compliance may be usefully reconsidered through the investigation of personal narratives of illness.

CONCLUSlON

Through this analysis of life stories of people with multiple sclerosis, the role of the stories as social as much as personal documents has been stressed-both in the sense that they are generated in and through social settings and interactions using socially avail- able images and ideas, and in the sense that they themselves are assessed and deployed by others to indicate, and reinforce appropriate responses to the presence of the disease. The particularly vigorous and positive approach that many people with multiple sclerosis take in attempting to achieve personal con- trol over the effects of the disease is well demon- strated in many of the life stories considered here, as is the significance of the accounts of others whose oral, and written narratives embody the collective

Personal narratives, social careers and medical courses 1185

experience of dealing with the perceived effects of the disease. The narratives indicate the importance of the personal quest both for meaning, but more particu- larly for mastery over the unpredictable physical course of the disease. In this quest the problematic initial search for a diagnosis through the formal health care system [34]; the often contentious and transient relationships with medical staff [35], and the frequently continuous experimentation with a wide range of medically unorthodox therapies [33], are a corollary of personal attempts to create or maintain a progressive narrative of life in the face of the disease. For many people with multiple sclerosis surrendering control to others-in particular to doc- tors concerned with the disease-does not appear compatible with their personal narrative of illness.

This discussion has elaborated some ideas about the relationship between biomedical, social and indi- vidual aspects of disease, sickness and illness. Using the concepts of physical course, social career and personal narrative it has been argued that they each relate to a different domain of knowledge and experi- ence about health status. Personal narratives of ill- ness have not only been less analysed than sickness careers of physical courses of disease, but have also not been seen previously as a significant research resource for systematic study. Their importance lies in the fact that, as Fitzpatrick argues, making sense of illness, and understanding the meaning of sickness and disease as not just a passive response to external events and circumstances but is an “active, construc- tive and selective process” [69]. Such an active process is complex [70] and involves ordering and sequencing the myriad range of phenomena in everyday life which may or may not be perceived as related to health and illness. One way of achieving this ordering is through a narrative, or storied, framework. Under- standing these frameworks-of which only one has been considered here-is a way of both providing a complementary and insightful analysis of illness in relation to sickness and disease, and of clearly indi- cating the close association between illness and life.

Life trajectories impelled by sickness careers, or by the physical course of disease, are only two dimen- sions of at least a three dimensional trajectory-of which personal narratives of illness are the third component. Indeed to a large degree the first two trajectories can only be understood in the context of that provided by a recognition of the role of personal narratives. In Bruyn’s terms the latter provides the ‘inner’ orientation to the former’s ‘outer’ orientation to research [45]. The ‘inner oriented’ personal dramas recounted here in a storied form are difficult to analyse formally, but that difficulty should not under- mine attempts to do so.

Acknowledgemenf--I acknowledge the support of Action for Research into Multiple Sclerosis for the work of the Brunei-Arms Research Unit based in the Department of Human Sciences. Brunei, The University of West London.

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