‘I didn’t want to be Psycho no. 1’: Identity struggles in narratives of patients presenting medically unexplained symptoms

Abstract

The aim of this article was to explore identity struggles related to the experience of living with medically unexplained symptoms (MUS) in illness narratives of patients with MUS. These patients pose therapeutic and communication challenges as their symptoms do not have an obvious underlying diagnosis. Previous studies have shown that their stories can best be described as ‘chaos narratives’, lacking a chronological development of symptoms or ‘legitimacy narratives’, through which patients seek to legitimize their invisible symptoms. The study draws on 21 interviews with MUS patients. The examples were selected from two contrasting cases in order to show how the patients accomplish their identity struggles through distinctive discursive tools, such as metaphors, modality, personal pronouns, evaluative devices, as well as characteristic interactional structure, navigating around the three identity dilemmas: continuity and change, self and other, and agent or undergoer.

Keywords

Agency chaos narrative conversation analysis discourse analysis identity dilemmas identity struggle illness narrative medically unexplained symptoms (MUS)Poland restitution narrative

Introduction: Illness narratives, identity, medically unexplained symptoms

Illness narratives make up a broad field of study that includes patients’ stories of illness, explores the way narratives are used in the interaction between patients and medical practitioners, and examines multiple functions of patients’ narrative in medical encounters – therapeutic, diagnostic or educational (cf. Greenhalgh and Hurwitz, 1999; Hydén and Bülow, 2006: 697). Most notably, illness narratives ‘give voice to suffering in a way that lies outside the domain of the biomedical voice’ (Hydén, 1997: 49). They may also ‘serve political ends as they raise awareness, destigmatize various illnesses, influence legislation and/or lobby for medical research’ (Japp and Japp, 2005: 108).

What I find particularly relevant for the exploration of my data are three major aspects of narrative. First, narrative is an important tool for making sense of illness experiences (cf. Labov and Fanshel, 1977). While recounting events that may be disturbing (Labov and Waletzky, 1967), narratives are said to add coherence to the experiences of illness through linearity and causality and ‘highlight the restoration of a disrupted order (equilibrium)’ (Georgakopoulou, 2006: 1388), thus they structure and facilitate the processing of personal experience. As such, narratives serve a cognitive function (Gygax and Locher, 2015: 2). Second, through narratives, tellers share their illness experience with others, usually with healthcare practitioners, and seek to legitimize it (cf. Burbaum et al., 2010; Japp and Japp, 2005; Nettleton, 2006).

Third, exploring illness narratives is crucial for understanding identity construction and transformation of self due to illness (Hydén and Bülow, 2006: 698). Ill people experience a rupture in their former sense of self or a loss of self as a consequence of illness (Charmaz, 1983). Narrative is considered to play a therapeutic role in that it helps to reconstruct a disrupted or fragmented identity and offers a way of integrating an identity as a patient into the sense of a coherent, permanent self (cf. Cheshire and Ziebland, 2005). Arthur Frank’s (1995) typology of illness draws attention to this tension between coherence and chaos (cf. Page, 2012: 49).

Frank distinguishes three types of narratives: the restitution narrative, the quest narrative and the chaos narrative, which can be experienced by the patient at different stages of an illness. In the restitution narrative, the person becomes ill, seeks help and recovers. This narrative reflects ‘a natural desire to get well and stay well’ (Frank, 1995: 78). In the quest narrative, the person who falls ill believes that they gain from their experience, for example will become more self aware after they recover. Finally, the chaos narrative is characterized by lack of structure, confusion and uncertainty, as the ill person struggles to recall the onset of their illness and give order to their experiences. The chaos narrative should be understood as ‘anti-narrative of time without sequence, telling without mediation, and speaking about oneself without being fully able to reflect on oneself’ (Frank, 1995: 98). The chaos story is thus the opposite of restitution, in which chaos means non-plot (Frank, 1995: 97). For this reason, it is also the most difficult type of narrative to listen to (cf. Nettleton et al., 2005: 206).

Most contemporary conceptions of narrative construction of identity share some assumptions, which are also adopted in the present article (cf. De Fina, 2010; De Fina et al., 2006: 2). First of all, identity is not considered to be a monolithic construct, but a dynamic process that takes place in specific interactional occasions (De Fina, 2011). Furthermore, the process of identity formation is embedded in social practices within which discourse practices play a central role (cf. Fairclough, 1989). In other words, identities are socially and discursively constructed. This is in line with a social constructionist perspective, which views identity as dynamic, negotiable and context-dependent. Social constructionism also assumes an individual’s constellations of identities, including conflicting versions of the self, which may produce certain tensions and eventually lead to their change (cf. Bamberg and Georgakopoulou, 2008; De Fina and Georgakopoulou, 2012: 105–190; Georgakopoulou, 2007).

This article is part of a larger research project on the role of medically unexplained symptoms (MUS) patients’ discourse in doctor–patient communication in a Polish primary care setting. MUS is a contested illness (Barker, 2010), as it is unnamed and is invisible (Nettleton et al., 2004: 48). When symptoms such as headache, back pain or fatigue persist but cannot be attributed to disease following clinical investigation, they are generally considered MUS. There are no definite scientific theories explaining the outbreak of MUS, and frequently, the presence of bodily symptoms is related to psychological distress or stress-related physiological arousal (e.g. Rief and Broadbent, 2007). As pointed out by Japp and Japp (2005), ‘without medical acceptance of the validity of the illnesses, social, legal, and economic acceptance is difficult if not impossible, leading sufferers to experience social stigma, devaluation and economic hardships’ (p. 108). Patients who suffer from MUS pose not only diagnostic, but also communication challenges to general practioners (GPs). The previous research has shown that their stories resonate with ‘chaos narratives’ (e.g. Nettleton et al., 2004). They lack coherence and a temporal sequence of events representing the development of symptoms; instead, these patients present their symptoms as habitual and enduring, using non-progressive modality and the present tense, and tend to communicate permanent distress and emotional frustration (cf. Elderkin-Thompson et al., 1998). Japp and Japp (2005) further observed that their narratives can best be described as ‘legitimacy narratives’ and can contain four interconnected core elements: the need to establish legitimacy of suffering, the search for moral legitimacy, the search for medical legitimacy and the search for public legitimacy. What is more, their narratives are not only personal accounts of illness experiences, but they also communicate broader cultural values, norms, beliefs and expectations, since they are linked to master narratives of biomedicine, which explain and treat disease on the basis of scientific validation, and institutional and public narratives (cf. Japp and Japp, 2005: 108–109). Accordingly, these patients need to orient themselves to the expectations of healthcare practitioners on the one hand, and deliver a legitimate illness narrative, and to the norms and expectations of a wider sociocultural context on the other. The construction and legitimation of patient identities are thus often challenging and there is a huge potential for struggle. This struggle is conducted in and through discourse (cf. Schnurr and Van De Mieroop, 2017: 1).

Research into negotiation of patient identities is still sparse, and usually ignores discursive tools used in identity formation. Previous sociological studies have focused mainly on the loss of self and discreditation (e.g. Charmaz, 1983), disruption caused by illness and narrative reconstruction (e.g. Williams, 1984), renegotiating identity and biographical work (e.g. Mathieson and Stam, 1995), or narrative identities and personal accountability (Horton-Salway, 2001). On psychological grounds, Erikson (1968) has explored identity struggle as aspects of ‘identity crisis’ during adolescence. Bamberg (2010) has argued for ‘identity navigation’ around the three dilemmas: continuity and change, self and other, and agency and undergoer. More specifically, he has observed that any claim of identity faces these three challenges:

(i) sameness of a sense of self across time in the face of constant change; (ii) uniqueness of the person vis-à-vis others in the face of being the same as everyone else; and (iii) the construction of agency as constituted by self (with a self-to-world direction of fit) and world (with a world-to-self direction of fit). (Bamberg, 2010: 4)

Drawing on conversation and positioning analysis, Burbaum et al. (2010) have demonstrated how patients suffering from MUS position themselves as somatically ill or justify their own life situation. In Poland, where family medicine is relatively new, there are no guidelines for management of patients with MUS, and Polish GPs are not always responsive to the patients’ needs for reassurance and empathy (cf. Czachowski et al., 2011; Sowińska, 2014, 2017)

In this article, I aim to bridge the research gap by exploring MUS patients’ struggles to legitimize the ‘invisible’ symptoms and associated suffering, and thereby their identity. In particular, the following research questions will be answered: How do patients with MUS experience identity struggles and make sense of them? What discursive tools do they draw on to negotiate their own identity in these struggles? More specifically, in my exploration of identity struggles I pay attention to the positioning strategies of the three identity dilemmas: patients’ construction of continuities or change across time in relation to symptoms, how patients set up their selves vis-a-vis others as same and different, and how they present a self as agent or as undergoer in relation to symptoms (cf. Bamberg, 2010; Bamberg et al., 2011).

For the purpose of the study, narrative is understood here as a stretch of talk in the semi-structured interviews (cf. Semino et al., 2014) in which patients describe their major symptoms and how they cope with them, attempt to interpret them and position themselves in relation to others. The concept of positioning captures the discursive formation of diverse selves, as tellers constantly place themselves and others into social or moral positions and juggle their multiple identities (De Fina, 2011: 272). These stretches, in some cases, depart from prototypical Labovian narratives (cf. Elderkin-Thompson, 1998; Labov and Waletzky, 1967) and can be regarded as ‘small stories’ (Georgakopoulou, 2007: 148), that is stories about self and other, which may be fragmented, minimally developed, habitual or future oriented (cf. Gygax and Locher, 2015). Next, I refer to Frank’s typology of illness narratives to show how the presented accounts of identity struggles resonate with particular features of these narratives. Finally, the description of identity struggles is combined with the methods derived from conversation analysis (henceforth CA) (e.g. Pomerantz, 1984; Schegloff et al., 1977). The annotations are based on Jefferson (2004).

Data and method

The data are 21 semi-structured interviews with patients presenting MUS, conducted by a GP in a doctor’s surgery at the Centre for Modern Interdisciplinary Technologies at Nicolaus Copernicus University in Torun, Poland, in 2015 (Sowińska and Czachowski, 2018). These were all video-taped, except for one audio-taped interview when the patient did not agree to be filmed. A purposive sample of 21 patients (9 men and 12 women, aged 18–57 years) diagnosed with F45, referred to as ‘psychosomatic or somatoform disorders’ according to the International Classification of Diseases (ICD-10), were recruited from a single general practice. The patients who had complained about the symptoms for at least 2 years were contacted either directly by their GP or by phone. More than a half of the patients were chronic presenters of MUS. The interviews were conducted according to the topic guide derived from the literature on MUS, and covered somatic, cognitive, behavioral, emotional and social dimensions of MUS (cf. Olde Hartman et al., 2013). The average duration of the interview was 40 minutes. All participants gave their informed consent.

The examples that are presented were selected from two contrasting cases, in particular from the beginning and ending of each interview, where the patients talked about their major symptoms, coping, and relations with others. Both patients were chronic MUS sufferers and participated in several psychotherapy sessions. Despite sharing the same diagnosis and visiting psychologists, their narratives revealed different identity struggles related to the experience of living with the symptoms.

Analysis

The first patient (P1) is a 36-year-old woman. She seems to have closure with regard to her symptoms. Her story focuses on the explanation of how she got rid of the symptoms during pregnancy (see Appendix 1 for data excerpts in original Polish):

Example 1

T1 GP: ok h it is mainly hh about (.) your symptoms that you previously (.)↑ described to me, these (0.5) headaches, muscle pains >about which we talked previously <hh can you specify (.) how often they occur?

T2 P1: (2.0) about these that I had a few years back?

T3 GP: Yes=

T4 P1: =the biggest hardcore experience I had with these fascicuLAtions [horrible …

T5 GP: [ye::s

T6 P1: it was horrible

T7 GP: Ok (.) could you describe what they looked like (.) what they were (.) these symptoms=

T8 P1: =it started with a horrible quarrel in my FAMILY and after two or three hours after that quarrel I started to feel as if I had discharges tiny thunderbolts in my whole ↑body

T9 GP: mhm

T10 P1: hh or as if somebody pricked me with needles >I mean these were electric discharges<

T11 GP: [yes

T12 P1: [in the whole body I felt and I was convinced that (.) >I mean I knew that it was a nervous reaction to that< HORRIBLE quarrel hh with my ↑MOther’s stepmother … for a long time I was trying to find out what it is >cos I thought it was restless leg syndrome< but there not all hh the sy:mptoms were precise ‘cos it matched that there is Coca-Cola in the veins instead of blood it matched but the other symptoms ↑didn’t, and later I came across the description of these fasciCUlations it was hh probably hh (.) the best fit .hh and it plagued me >DEAR GOD< ↑two years <↑three> TERRIBLY lo:ng this was the reason >nothing short of agony< horrible ‘cos I was certain that I had a serious neurological condition

T13 GP: mhm mhm

T14 P1: … >my problem was that< I kept thinking about it >for example when I was moving then of course< I didn’t have it but when I was sitting still >God forbid when I was trying to sleep< then I had it and the longer I was lying and was feeling it the more difficult it was to fall asleep the more difficult it was to fall asleep and I was focusing on it the more intensely I was feeling it it was an utter nightmare…

In the first example, the patient struggles to portray herself as an expert, who possesses increased awareness and knowledge about the illness (if compared to the past), and a responsible patient, who tries to assume control over the symptoms (for a long time I was trying to find out; my problem was that; I knew that …). Structurally, her account contains some components of the Labovian narrative (Labov and Waletzky, 1967): abstract (the biggest hardcore experience … in T4), orientation (it started with … in T8), complicating actions (from I started to feel as if . . . in T8, T10 and T12), and evaluations (it was horrible in T6, it was an utter nightmare in T14, my problem was that … in T14).

From the very beginning she distances herself from her illness experience by talking about it in the past. When asked about the symptoms, she recalls their onset and is able to link it to the cause: a HORRIBLE quarrel in her family. While navigating the first identity dilemma – constancy and change – she points to a change in her present perception of illness as compared to the past (‘cos I was certain that I had a serious neurological condition). By using specific medical terminology (fasciculations, restless leg syndrome), by providing detailed descriptions of her symptoms and drawing on vivid metaphorical language (tiny thunderbolts in my whole body, as if somebody pricked me with needles, I mean these were electric discharges), she is struggling to legitimize the invisible symptoms. Yet these multiple emotional and value-laden expressions, especially negative adjectives (e.g. it was horrible in T6), verbs (it plagued me . . . dear God in T12), intensifiers and nouns used to evaluate her illness experience (e.g. it was an utter nightmare in T14), extreme case formulations (e.g. the biggest hardcore experience in T4) and references to God (e.g. God forbid in T14), seem to be used not only to legitimize her illness, but also to communicate and legitimize her suffering and distress to the GP, possibly gain his empathy, and thereby construct a legitimate patient identity.

Her identity struggle is also performed at the interaction level. Her contributions have the story-telling format and are fluent, but characteristically the patient alternates between a rapid pace of delivery (e.g. >I mean I knew that it was a nervous reaction to that< in T12, or >for example when I was moving then of course< in T14) and her normal tempo. Together with an increased loudness of selected items (e.g. FAMILY in T8; HORRIBLE and TERRIBLY in T12) and the use of heavy, sentential stress (e.g. tiny thunderbolts in my whole ↑body in T8 or a serious neurological condition in T12), it creates the impression of a well-prepared, almost theatrical narration. In contrast to typical chaos narratives told by MUS patients as described in the literature, this story is interesting to listen to owing to its plot line, the vivid use of informal and metaphorical language and fluent delivery.

The patient’s identity struggle resurfaces in the next example, which reveals self-differentiation. She acknowledges shame related to her condition and constructs an image of herself as ‘other’ by positioning herself as ‘psycho’, the membership category, which is unequivocally negative:

Example 2

T1 GP: and where else did you seek hh hh some advice with your ↑friends ↑doctor with with some ↑fortuneteller .hh somebody else?

T2 P1: … I didn’t talk to people MUCH unless they were trustworthy °because I was kind of ashamed of this° I didn’t want to be Psycho Number 1 in company so hh not too many people knew.

Specifically, the patient discloses in a perceptibly quiet manner that she did not search for advice because she °was kind of ashamed of this° (T2) and didn’t want to be Psycho Number 1 (T2). Shame and stigma often accompany illness (cf. Kleinman, 1988). However, as observed by Kleinman (1988: 160), the stigma begins with the patient’s own acceptance of a stigmatized identity. To put it differently, stigma is internalized as a ‘spoiled identity’ (Goffman, 1963: 3). The patient presupposes that people would negatively label her as ‘psycho’. Previous studies have corroborated the stigmatization of symptoms that have a mental origin and the GPs’ negative attitude towards MUS patients (Czachowski et al., 2011; Freidl et al., 2007; Sowińska, 2014; Stone, 2014)

Yet by the end of the interview, as illustrated in Example 3, the patient successfully struggles to manage her potentially ‘spoiled’ identity as a psycho, and repositions herself as a powerful and agentive person who takes action and assumes control over her illness and life events:

Example 3

T1 GP: and what were these circumstances [when the symptoms disappeared, AS]?

T2 P1: … I simply at a certain point grew up so THAT I could really get straight and confront this neurotic <part of of my> nature hh and this mainly happened when I was ↓PREGNANT I came to the conclusion that hh I can’t give birth to a BABY be: such a psy:cho and pour it on the child and I promised myself that at all costs (.) that my child >will never have< MOTHER who first looks for all kind of cancers and in a moment she will worry about this child and throughout the pregnancy I just wanted to do THIS brainwashing (1.0) to myself to get rid of this shit. (…)

T3 P1: … I simply promised myself then that hh I have that many months of pregnancy and I promised myself that I will simply do everything to ↓ CUT OUT this part of my nature and I DID ↓ it I worked on myself (.) I attended psychotherapy (.) which I continued for a long time hh simply hh so as NOT to transfer it on my CHILD … and I’ve been successful up till now.

Most notably, while navigating the agency dilemma, she constructs a heroic self – a person who comes across as strong, self-determined, rational and in control (cf. Bamberg et al., 2011). The events reported by the patient, namely her pregnancy, led to a change in terms of a former position regarding the symptoms that was replaced by a new one. Her identity struggle is accomplished linguistically through a series of assertions, the first person pronouns accompanied by active verbs, and metaphors: the metaphors of maturity (e.g. growing up) and the metaphors of confrontation and struggle (e.g. confront this neurotic <part of of my> nature or ↓CUT OUT this part of my nature) that conceptualize the patient’s past illness experience. Furthermore, her struggle reveals when the patient constructs a dichotomy between brainwashing and shit, where brainwashing is evaluated positively and acts as an antidote against the negatively charged symptoms. These expressions get the tonal stress and are separated by a brief pause, which may possibly act as a boosting device to emphasize her point. Through these metaphors and polarized and vulgar use of language she communicates a strongly negative evaluation of her illness. Then she rejects her past, ‘spoiled’ identity (e.g. I can’t give birth to a BABY be: such a psy:cho), and positively evaluates confrontation with the illness, while embracing a new identity of would-be mother. Her determination to confront her illness resonates in the prosody marked by regular intervals at which the added stress ( promised , pregnancy, psychotherapy, continued and successful ) and the amplification of phrases are topically related to the struggle with her condition (CUT OUT, DID, NOT and CHILD).

All in all, her story resonates with the restitution narrative, the most preferred illness story. It is coherent, fluent and possesses a clear temporal frame (cf. Elderkin-Thompson et al., 1998). In the restitution narrative, the story typically displays heroism in the face of bodily breakdown (Frank, 1995: 93). The restitution narrative also favors the language of fighting illness and being ‘successfully ill’ (Frank, 1995). However, the patient’s agency is not limited to compliance as it is the patient who works out her own success and copes with the symptoms.

The second patient (P2) is a 28-year-old man. Contrary to the first patient, he positions himself as powerless, vulnerable and frustrated, struggling to pin down and legitimize his symptoms (see Appendix 2 for data excerpts in original Polish). He is still fully suffering from MUS:

Example 1

T1 GP: We are talking about these two major [symptoms] of yours that is breathing…

T2 P2: … the MOST crushing thing for me is hh this inTErnal RESTlessness=

T3 GP: =mhm mhm mhm

T4 P2: and this hh and hh and this is SO destructive.

The GP starts by referring to the major somatic symptoms mentioned by the patient at the beginning of the interview: problems with breathing and sweatiness. The patient points forcefully to inTErnal RESTlessness as the main problem, using the present tense, and thereby constructing the symptom as still persistent. Accordingly, with regard to the navigation of sameness and change across time, the patient presents himself as the same. In a similar vein to the first patient, his identity struggle to legitimize the symptoms and his suffering is performed through the use of negative adjectives (crushing and destructive), preceded by boosters (SO destructive), extreme case formulations (the MOST crushing thing) and particular use of stress and intonation, which possibly serve to intensify his point. At the interaction level, the patient’s struggle manifests itself through hesitations (is hh this, and this hh and hh and in T2 and T4) and qualifiers preceding the naming of the symptoms.

In the following excerpt, the patient navigates the second identity dilemma: setting up a sense of self vis-a-vis others (see also Example 3). He struggles to articulate what is acutely germane to him: his inability to cope with a fear that his symptoms will be visible to others:

Example 2

T1 P2: … when hh I go out with my friends or hh GO out of the city (.) hh then I am afraid ↑that hh (.) hh this (.) this sweatiness will hit me this this heavy

breath (.) and that the others will see it…

T2 GP: mhm=

T3 P2: =and and in fact this this stress is amplified by hh the fact that I don’t want to sort of FLAUNT it so so that I just can’t cope with the stress=

T4 GP: =[mhm I

T5 P2: [can’t cope with emotions

The patient’s anxiety that others will notice his symptoms may imply his fear of being excluded due to his ‘otherness’, and hidden yet not articulated shame about the symptoms.

When it comes to the third dilemmatic territory, that is, construction of agency, the patient positions himself as vulnerable and weak in relation to his illness. The patient appears to distance himself from his illness experience, which is evident in the way he conceptualizes the symptoms as if they come from the outside; yet the symptoms, which take the semantic role of the agent that acts (e.g. sweatiness will hit me in T1), are constructed as directly affecting him. Again his struggle to adequately define, legitimize and manage his illness is accomplished interactionally through hesitations and pauses (e.g. hh (.) hh this (.)), the repetition of qualifiers preceding various symptoms (e.g. this (.) this sweatiness, this this heavy breath) and the repeated modal verb I can’t, which signal uncertainty. This narrative of powerlessness and frustration is continued in the next lines of Example 3:

Example 3

T1 P2: … subconsciously I’m afraid that hh I will have a fit of panic or this stress or something like ↑that and hh (.) it will be vi:sible (.) to- the- people I am at the moment- ↑just like that=

T2 GP: =[mhm

T3 P2: [I won’t t(h)alk with for let’s say half an hour (.) dunno (.) and- n (.) I will have heavy breath and so ↑on and- n- n- such a behaviour is visible ↑innit=

T4 GP: =You’re anxious about YOUR image (.) in the eyes of others?=

T5 P2: =yes- yes- yes- yes-

T6 GP: What will others think? [( )

T7 P2: [yes- yes- correct- correct- yes- hh (.) and it it produces the biggest stress in me

T8 GP: mhm mhm mhm=

T9 P2: =it is completely irrational cos I always hh NEVER cared somehow about about the opinion of hh other people

T10 GP: mhm=

T11 P2: =somehow hh I’m an individualist

In this excerpt, the patient communicates a strong sense of uncertainty through a series of hedges (e.g. a fit of panic or this stress or something like ↑that, (.) dunno (.), and so ↑on) and numerous question tags, as if the patient wanted to have his opinions confirmed by the doctor. In Turn 4, the doctor interrupts in order to aptly summarize the patient’s behavior: You’re anxious about YOUR image (.) in the eyes of others?, and adds later: What will others think? (T6). The patient enthusiastically agrees with the doctor’s statements. In the final lines of the excerpt, he struggles to provide an excuse for his illness behavior: cos I always hh NEVER cared somehow about about the opinion of hh other people (T9). By negatively evaluating his behavior as ‘irrational’, he implicitly positions himself in the category of ‘irrational’ people. Although he corrects himself initially (self-initiated self-repair) and emphasizes strongly that he NEVER cared about the opinion of other people, he hesitates and expresses doubt and uncertainty by using qualifiers (somehow in T11) and repetitions (about about in T9). In other words, despite his struggle to assert his identity as an individualist, he fails to do it: his final statement in Turn 9, which was supposed to sound affirmative, is strongly hedged: somehow hh I’m an individualist. It testifies to an identity struggle between the rational and independent person he considered himself to be and his completely irrational illness behavior.

Most importantly, in the final lines of the interview (see Example 4), the patient is blaming himself for his illness behaviors:

Example 4

T1 GP: … what’s your opinion about that (.) this diagnosis is that that you unfortunately have ↑it [what

T2 P2: [I think that (.) if hh I hadn’t started reading about it hh and I’ve read a lot about >on the Net various< articles hh if I hadn’t visited the ↑psychologist hh hadn’t comMUnicated with these people about ↑it then I would have already put it behind myself and hh I would be ok now.

T3 GP: mhm=

T4 P2: =while I really myself hh I have blown IT up

T5 GP: mhm=

T6 P2: =and in fact hh °this° if you think so much about it- yes?

T7 GP: mhm=

T8 P2: =and if you do so much- yes?

T9 GP: mhm

T10 P2: these are my opinions (.) and they can’t be objective - yes?

The final lines communicate a strong sense of uncertainty, which may be additionally reinforced by the GP’s implicit negative evaluation of his illness (unfortunately in T1). The patient’s account points to the failure of medicine – consultations with specialists did not help him, but only contributed to blowing the illness experience up. This aspect resonates precisely with the chaos narrative. Yet in contrast to typical chaos narratives, the patient is able to reflect on his illness experience and his narrative reflects causality: he thinks that his symptoms result from devoting too much attention to them (T2). Interestingly, the patient also attempts to construct an image of himself as an agentive and responsible patient (if hh I hadn’t started reading about it hh and I’ve read a lot about >on the Net various< articles hh if I hadn’t visited the ↑psychologist hh hadn’t comMUnicated with these people about ↑it). However, in contrast to the first patient, he evaluates his actions negatively, blaming himself for his symptoms. By doing this, he loses his identity struggle.

Concluding remarks

To conclude, the analysis of narratives told by patients with MUS revealed identity struggles accomplished through distinctive discursive tools, such as first person pronouns, metaphors, modality and evaluative devices, and characteristic interactional structure. These particular discursive repertoires cue listeners as to how the two narrators construe a sense of self as MUS patients, that is, how they intend to be understood. As observed by Japp and Japp (2005), in the case of patients with MUS, the biomedical master narrative of what constitutes a legitimate disease requires the evolution of the ‘legitimacy narrative’ in which an individual’s account of illness must attempt to establish legitimization for the patient’s experiences (p. 109).

In the first case, in order to legitimize the symptoms and negotiate her identity, the patient portrayed herself as a knowledgeable and responsible patient who ‘recovers’ from the symptoms. She embarked on a story of her confrontation with the symptoms while being pregnant. Although the sustainability of this narrative seems questionable in the face of a possible relapse of the symptoms, through telling this story the patient’s identity has been successfully negotiated. Her narrative strategies could also be construed as more ‘healthy’, if compared to the other patient. More specifically, despite admitting to hiding her illness from others due to shame, the patient smoothly constructed a restored identity by the end of the interview, and positioned herself as an agent in relation to symptoms, who takes action and assumes control over her symptoms. Her identity struggle was accomplished discursively through characteristic metaphors of maturity, metaphors of confrontation and struggle, polarized expressions and first person pronouns accompanied by active verbs. These discursive devices contributed to the construction of events as indexing a patient’s transformation (cf. Bamberg et al., 2011). The patient’s turns were longer and had a more continuous execution. It was also in the first case where the informal, sometimes vulgar use of language was used to legitimize the patient’s experience and possibly engage the GP to vividly reconstruct it. All these features resonated with a master narrative of restitution.

Conversely, the second patient’s identity struggle resonated with a chaos narrative: the symptoms were presented as habitual, the patient positioned himself as powerless in relation to his illness and frustrated. These characteristics were congruent with narratives of somatizing patients described by Elderkin-Thompson et al. (1998) as well as MUS patients’ accounts in a study by Nettleton et al. (2004, 2005). The identity struggle was communicated through short turns, and a disrupted narrative flow – punctuated by hesitations, pauses, qualifiers and question tags – which was indicative of dispreference organization. Conversational dispreference has been linked to moments of interactional crisis related to, for example, lack of consensus on the course of conversation, definitional problems or processing problems (cf. Żywiczyński, 2010). The elements of chaos (sensu Frank) in illness narratives may thus be signaled by characteristics typically found in dispreferred turns, such as delays (e.g. pauses before delivery, repair initiators), prefaces (e.g. qualifiers) or hesitations (e.g. various forms of self-editing) (Levinson, 1983: 334–335). They appear to testify to the patient’s cognitive struggle to assign meaning to the symptoms, to emotional conflict, or may serve as a conversational means of distancing oneself from illness experience. With regard to the differentiation between self and other, the analysis has revealed how the patients positioned themselves as ‘others’ and struggled with shame related to their symptoms.

Overall, the presented identity struggles were related to knowledge and competing sociocultural norms, or, to put it differently, dominant discourses or master narratives (cf. Van De Mieroop and Schnurr, 2017). By telling a story of being ‘successfully ill’, the first patient managed to challenge the dominant discourse of patients with MUS and constructed a ‘dissident’ identity. By asserting knowledge about their symptoms and providing explanations, patients with MUS seem to successfully legitimize their illness experience and their identities. Conversely, by openly admitting and expressing uncertainty, they fail to do so.

The results seem to prove the usefulness of the analytic procedure that draws on the positioning strategies around the three identity dilemmas (continuity and change, self and other, agent and undergoer) for the analysis of patient narratives. This type of narrative analysis can contribute to the analysis of other illness narratives, especially those told by patients with other contested illnesses.

Footnotes

Appendix 1

Appendix 2 Acknowledgements

I thank my colleagues and the patients who agreed to participate in the project, and the Faculty of Languages and Centre for Modern Interdisciplinary Technologies at Nicolaus Copernicus University in Torun for providing space and support.

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was funded by the research grant DEC-2013/11/B/HS2/02449 from the National Science Centre.

Author biography

Agnieszka Sowińska is Assistant Professor in the English Department of Nicolaus Copernicus University, Poland. Her research interests include communication in primary care, (Critical) discourse analysis, political linguistics and media communication. She collaborates with GPs within the European General Practice Research Network. She is also a member of the International Pragmatics Association. Her recent publications include A Critical Search for Values in George W. Bush’s State of the Union Addresses (Peter Lang) and ‘Even if there were procedures, we will be acting at our own discretion …’: General practitioners’ struggle about identity (in D. Van De Mieroop and S. Schnurr (eds), Identity Struggles: Evidence from Workplaces Around the World, John Benjamins, 2017).

References

Bamberg

(2010) ‘Who am I?’ Narration and its contribution to self and identity. Theory & Psychology 21(1): 1–22.

Bamberg

Georgakopoulou

(2008) Small stories as a new perspective in narrative and identity analysis. Text & Talk 28: 377–396.

Bamberg

de Fina

Schiffrin

(2011) Discourse and identity construction. In: Schwartz

Luyckx

Vignoles

(eds) Handbook of Identity Theory and Research. Berlin; New York: Springer, pp. 177–199.

Barker

(2010) The social construction of illness: Medicalization and the contested illness. In: Bird

Conrad

Fremont

et al . (eds) The Handbook of Medical Sociology, 6th edn. Nashville, TN: Vanderbilt University Press, pp. 147–162.

Burbaum

Stresing

Fritzsche

et al . (2010) Medically unexplained symptoms as a threat to patients’ identity? A conversation analysis of patients’ reactions to psychosomatic attributions. Patient Education and Counseling 79(2): 207–217.

Charmaz

(1983) Loss of self: A fundamental form of suffering in the chronically ill. Sociology of Health & Illness 5: 168–195.

Cheshire

Ziebland

(2005) Narrative as a resource in accounts of the experience of illness. In: Coates

Thornborrow

(eds) Sociolinguistics of Narrative. Amsterdam: John Benjamins, pp. 17–40.

Czachowski

Piszczek

Sowińska

et al . (2011) GPs’ challenges in the management of patients with medically unexplained symptoms in Poland: A focus group-based study. Family Practice 29: 228–234.

De Fina

(2010) The negotiation of identities. In: Locher

Sage

(eds) Interpersonal Pragmatics. Berlin: De Gruyter, pp. 205–224.

10.

De Fina

(2011) Discourse and identity. In: Van Dijk

(ed.) Discourse Studies: A Multidisciplinary Introduction. London: SAGE, pp. 263–282.

11.

De Fina

Georgakopoulou

(2012) Analyzing Narratives: Discourse and Sociolinguistic Perspectives. Cambridge: Cambridge University Press.

12.

De Fina

Schiffrin

Bamberg

(2006) Introduction. In: De Fina

Schiffrin

Bamberg

(eds) Discourse and Identity (Studies in Interactional Sociolinguistics 23). Cambridge: Cambridge University Press, pp. 1–23.

13.

Elderkin-Thompson

Silver

Waitzkin

(1998) Narratives of somatizing and non-somatizing patients in a primary care setting. Journal of Health Psychology 3(3): 407–428.

14.

Erikson

(1968) Identity: Youth and Crisis. London and New York: W. W. Norton & Company.

15.

Fairclough

(1989) Language and Power. London: Longman.

16.

Frank

(1995) The Wounded Storyteller: Body, Illness and Ethics. Chicago, IL: University of Chicago Press.

17.

Freidl

Spitzl

Prause

et al . (2007) The stigma of mental illness: Anticipation and attitudes among patients with epileptic, dissociative or somatoform pain disorder. International Review of Psychiatry 19: 123–129.

18.

Georgakopoulou

(2006) Narrative analysis. In: Verschueren

Östman

Blommaert

et al . (eds) Handbook of Pragmatics. Amsterdam: John Benjamins, pp. 1386–1404.

19.

Georgakopoulou

(2007) Small Stories, Interaction and Identities. Amsterdam: John Benjamins.

20.

Goffman

(1963) Stigma. New York: Simon & Schuster.

21.

Greenhalgh

Hurwitz

(1999) Why study narrative? British Medical Journal 318: 48–50.

22.

Gygax

Locher

(2015) Introduction to narrative matters in medical context. In: Gygax

Locher

(eds) Narrative Matters in Medical Contexts across Disciplines. Amsterdam: John Benjamins, pp. 1–14.

23.

Horton-Salway

(2001) Narrative identities and the management of personal accountability in talk about ME. Journal of Health Psychology 6(2): 247–259.

24.

Hydén

(1997) Illness and narrative. Sociology of Health & Illness 19(1): 48–69.

25.

Hydén

Bülow

(2006) Medical discourse: Illness narrative. In: Brown

(ed.) Encyclopedia of Language and Linguistics, 2nd edn. Oxford: Elsevier, pp. 697–703.

26.

Japp

(2005) Desperately seeking legitimacy: Narratives of a biomedically invisible disease. In: Harter

Japp

Beck

(eds) Narratives, Health and Healing: Communication Theory, Research and Practice. Mahwah, NJ: Lawrence Erlbaum, pp. 107–130.

27.

Jefferson

(2004) Glossary of transcript symbols with an introduction. Pragmatics & Beyond: New Series 125: 13–31.

28.

Kleinman

(1988) The Illness Narratives: Suffering, Healing, and the Human Condition. New York: Basic Books.

29.

Labov

Fanshel

(1977) Therapeutic Discourse. New York: Academic Press.

30.

Labov

Waletzky

(1967) Narrative analysis: Oral versions of personal experience. Journal of Narrative and Life History 7(1–4): 12–44.

31.

Levinson

(1983) Pragmatics. Cambridge: Cambridge University Press.

32.

Mathieson

Stam

(1995) Renegotiating identity: Cancer narratives. Sociology of Health & Illness 17(3): 283–306.

33.

Nettleton

O’Malley

Watt

et al . (2004) Enigmatic illness: Narratives of patients who live with medically unexplained symptoms. Social Theory & Health 2(1): 47–66.

34.

Nettleton

Watt

O’Malley

et al . (2005) Understanding the narratives of people who live with medically unexplained illness. Patient Education and Counseling 56: 205–210.

35.

Nettleton

(2006) ‘I just want permission to be ill’: Towards a sociology of medically unexplained symptoms. Social Science & Medicine 62(5): 1167–178.

36.

Olde Hartman

Blankenstein

Molenaar

et al . (2013) NHG guideline on medically unexplained symptoms (MUS). Huisarts Wet 56(5): 222–230.

37.

Page

(2012) Stories and Social Media: Identities and Interaction. London: Routledge.

38.

Pomerantz

(1984) Agreeing and disagreeing with assessments: Some features of preferred/dispreferred turn shapes. In: Atkinson

Heritage

(eds) Structures of Social Action: Studies in Conversational Analysis. Cambridge: Cambridge University Press, pp. 21–27.

39.

Rief

Broadbent

(2007) Explaining medically unexplained symptoms: Models and mechanisms. Clinical Psychology Review 27(7): 821–841.

40.

Schegloff

Jefferson

Sacks

(1977) The preference for self-correction in the organization of repair in conversation. Language 53: 361–382.

41.

Schnurr

Van De Mieroop

(2017) Introduction: A kaleidoscopic view of identity struggles at work. In: Van De Mieroop

Schnurr

(eds) Identity Struggles: Evidence from Workplaces Around the World. Amsterdam: John Benjamins, pp. 1–18.

42.

Semino

Demjén

Koller

(2014) ‘Good’ and ‘bad’ deaths: Narratives and professional identities in interviews with hospice managers. Discourse Studies 16(5): 667–685.

43.

Sowińska

(2014) ‘I must do everything to eliminate my negative attitude’: Polish general practitioners’ emotions toward patients with medically unexplained symptoms. In: Baider

Cislaru

(eds) Emotions in Context. Amsterdam: John Benjamins, pp. 309–330.

44.

Sowińska

(2017) ‘Even if there were procedures, we will be acting at our own discretion…’: General practitioners’ struggle about identity. In: Van De Mieroop

Schnurr

(eds) Identity Struggle: Evidence from Workplaces Around the World. Amsterdam: John Benjamins, pp. 281–98.

45.

Sowińska

Czachowski

(2018) Patients’ experiences of living with medically unexplained symptoms (MUS): a qualitative study, BMC Family Practice 19:23. Available at: https://doi.org/10.1186/s12875-018-0709-6.

46.

Stone

(2014) Blame, shame and hopelessness: Medically unexplained symptoms and the ‘heartsink’ experience. Australian Family Physician 43: 191–195.

47.

Van De Mieroop

Schnurr

(2017) Epilogue: Identity struggles as a reflection of knowledge, competing norms, and attempts for social change. In: Van De Mieroop

Schnurr

(eds) Identity Struggles: Evidence from Workplaces Around the World. Amsterdam: John Benjamins, pp. 445–454.

48.

Williams

(1984) The genesis of chronic illness: Narrative reconstruction. Sociology of Health & Illness 6(2): 175–200.

49.

Żywiczyński

(2010) The Axiology of Spoken Interaction: An Essay on the Organization of Conversational Behavior. Toruń: Wydawnictwo UMK.