health: An Interdisciplinary Journal for the Social Study of Health, Illness and Medicine Copyright © 2009 SAGE Publications (Los Angeles, London, New Delhi, Singapore and Washington DC) DOI: 10.1177/1363459308336794 Vol 13(5): 505 –521
Illness explanations among patients with medically unexplained symptoms: different idioms for different contexts Mette Bech Risør Aarhus University Hospital, Denmark
a b s t r a c t Patients with medically unexplained symptoms (MUS) are often considered to be strictly confined to thinking about their symptoms as having only a physical etiology. However, several studies have shown, that the patients also apply other explanations for their sufferings. The aim of this study is to analyse the social construction of illness explanations among patients with MUS, and to illustrate the use of explanatory idioms as being dependent on space, time and setting, legitimizing each idiom. The study is based on repeated, semi-structured, qualitative interviews with nine informants during a period of 1.5 years. A thematic content analysis was performed on a pragmatic and phenomenological basis. We found, that patients with MUS employ at least four different explanatory idioms defined as: (1) the symptomatic idiom; (2) the personal idiom; (3) the social idiom; and (4) the moral idiom. All idioms play an important role in the process of creating meaning in the patients’ everyday life. The symptomatic idiom is mainly used at clinical consultations in primary care, but it is not the only idiom of significance for the patients. Simultaneously other idioms exist and gradually become important for especially patients with MUS due to the lack of valid diagnoses and treatment opportunities. Clinical settings, however, call for the employment of the symptomatic idiom and a discrepancy is found between the general practitioners’ notion of the bio-psycho-social model and the patients’ everyday life idioms. k e y w o r d s idioms; illness explanation; medically unexplained symptoms; MUS; qualitative research a d d r e s s Mette Bech Risør, The Research Clinic for Functional Disorders and Psychosomatics, Aarhus University Hospital, Nørrebrogade 44, DK-8000 Århus C, Denmark. [Tel: +45 89494329; fax: +45 89494340; e-mail:
[email protected]]
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Introduction Illness explanations play a vital role in the clinical communication between general practitioners (GPs) and patients with medically unexplained symptoms (MUS) (Kirmayer et al., 2004; Salmon, 2007). Medically unexplained symptoms or functional disorders can be defined as: ‘conditions where the patient complains of physical symptoms that cause excessive worry or discomfort or lead the patient to seek treatment, but for which no adequate organ pathology or patho-physiological basis can be found’ (Fink et al., 2002). The definition is purely descriptive and does not indicate any etiology, but only refers to the lack of objective pathology. No clear basis for the condition is known. Overall, MUS is a common condition, ranging from normal reactions to chronic conditions (Rosendal et al., 2007). Most people have experienced bodily symptoms and sensations that pass without causing worries or involvement of the health system, but some experience physical symptoms, that are long-lasting and seriously influence their daily life. The GPs are often the first to encounter patients with MUS, and these patients present a great challenge to the GPs, due to their often biomedically inconclusive situations and conditions. The bio-psycho-social model (Engel, 1977) and the patient-centered method (McWhinney, 1997) are two examples of useful tools that have been developed to help GPs understand the complexity of a patient’s life and the context in which a patient’s distress is playing an important role. This is no easy task, and when it comes to patients with MUS this understanding is complicated further by the fact that a proper diagnosis cannot be made. With a diagnosis follow accepted and implicit explanations, etiology and often treatment. However, for patients with MUS this well-established clinical reasoning is eliminated, and the complex understanding of the patient becomes both very important and very difficult. The GP, repeatedly encountering a patient with chronic MUS, may have found a certain modus vivendi with this patient. But for patients experiencing bodily distress as new and potentially constraining events in their lives, a condition which cannot be medically explained, it must be expected that this condition creates difficulties for both GPs and patients. Both parts are in doubt, and they both have their specific agendas and explanations (Salmon and May, 1995; Salmon et al., 1999). Furthermore, extensive qualitative research has been conducted concerning chronic MUS patients (Nettleton et al., 2004, 2005; Dalsgaard, 2005; Soderlund and Malterud, 2005; Madden and Sim, 2006; Whitehead, 2006), but only very little on non-chronic patients. The aim of this study is to explore illness explanations, especially in patients with mild or early chronic MUS, in order to analyse the social meaning and cultural construction of everyday illness explanations. There is a need to understand these patients’ explanations and perspectives on their illnesses, in order to show how the explanations are determined by context, setting and space, and how some explanations are limited to the clinical encounter and others are related to the patients’ everyday life. 506
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Theoretical and analytical assumptions Illness explanation as an analytical concept is found in medicine, anthropology and psychology with varying focus on etiology, narrative elements or illness perception (Kleinman, 1981; Garro, 1986; Good, 1986; Mattingly, 1998; Leventhal et al., 2003; Nettleton et al., 2004, 2005). This concept has for a long time been a central focus in medical anthropology, and both empirical and theoretical studies have influenced other disciplines (e.g. medicine). Basically, illness explanations are expressions of how an individual perceives his/her disorder, his/her personal understandings and interpretations of causes, thoughts about treatment and the future development of the illness and his/her attempts to find a reason for the suffering. Kleinman’s (1981) early Explanatory Model (EM) is a useful analytical model, as it combines contextual analysis of the local worlds and clinical realities, in which the explanations are embedded, with a specific illness episode. In its application the EM, however, seems to give only specific episoderelated answers, focused on one particular illness episode, rather than process-related answers. It also favors a cognitive approach to illness and fails to include emotional, embodied and contextualized experiences. Furthermore, the model tends to ignore the very pragmatic and socially contingent ways in which sick individuals often deal with their sufferings. Recent anthropological approaches to illness explanations are often based on the lived experience of being ill, and as shown by Whyte (1997) patients navigate in a world of uncertainty, ready to change perceptions and ideas over time. As such they approach their illness or misfortune pragmatically through changing scenarios of treatment, relief and explanations. Their explanations may work at different levels simultaneously, employing different contexts, and the notion of, for example, etiology does not determine explanations of illness courses or treatments, which is often an implicit inference of EMs, linking etiology to disease. Etiology is structured through individual experiences, through interaction with others and through significant cultural symbols/representations. Etiology is in this way extended to sense-making experiences of many kinds, and not limited to an idiom of pathology. In this article it is shown, how Danish subacute and early chronic patients with MUS approach their distress, based on social situations and with different explanations. These explanations may be seen as alternating idioms of distress (Nichter, 1981). Idioms are ‘guides to action that are in common currency in a community (shared, like a dialect), that convey meaning and are understood like a vocabulary, and that constitute a situation in a particular way’ (Whyte, 1997: 23). An idiom is used only within a culture, often a local culture or context, where parties have a common reference in order to obtain mutual understanding. An idiom refers to a ‘unity and identity of “felt life” and embodied experience’ (Butler et al., 2004: 220) and is expressed essentially as moral and cultural dimensions, not as separate psychological, social or physical dimensions. Idioms are connected to and 507
health: 13(5) constitute situations of mutual understanding. Idioms are also related to a narrative reconstruction of illness experiences, representing interpretations with purposive and functional components, not merely beliefs or causes (Williams, 1984). Viewing illness explanations as expressed in variable and interchangeable idioms is a pragmatic and situational approach. Such an approach emphasizes process rather than category. Dominating research on how patients with MUS explain their sufferings has for example focused on the etiology of the condition, arguing that both ‘presenting somatizers’ and ‘functional somatizers’ attribute their symptoms to physical problems or physical illness (Goldberg and Bridges, 1988; Lipowski, 1988). This definition implies that patients with MUS are dominated by a preoccupation with physical illness and a tendency to attribute physical symptoms to physical causes (Kirmayer and Robbins, 1996; Barsky and Borus, 1999; Rief et al., 2004). The style of preoccupation and attribution varies in degree according to, for example, which group of somatizers the patient belongs to (Kirmayer and Robbins, 1996), although somatizers in general are thought of as having a tendency to misinterpret and/or intensify normal bodily sensations (Fink et al., 2002). But do they, and in what context? Is this finding only conditioned by the health care system, where a corresponding idiom is found? The local context of power and tradition and the rules of the game for clinical communication might make the patient try to influence the general practitioner to find, for example, a biomedical explanation (Salmon and May, 1995; Salmon, 2000) or in other words to be confined to employ the local idiom. How about other explanations and idioms, which do not fit with biomedicine and are invoked in other situations? In this article it is argued that the symptomatic idiom, dominating biomedicine, is only one out of several, and that idioms are used differently according to social situations and stages of an individual’s illness process.
The study This study is part of a larger study on illness behavior among patients with MUS in Danish primary care. The study is based on semi-structured, qualitative research interviews. Informants were found during two rounds of criteria-based purposeful sampling (Patton, 2007). In the first round five GPs agreed to select informants, who then accepted to be contacted. After six months we had only found three informants. In the second round six informants were selected by the author through personal contact in the waiting room of three general practices. This took place over a period of six months, following the first six months. Interviews started during the first sampling round. During both sampling rounds very few descriptive criteria were used: (a) the patient suffers from recent physical symptoms; (b) the symptoms cause him/her distress and possible impairment; and (c) the patient has consulted his/ 508
Risør: Illness Explanations Among Patients her GP and has not been given an adequate or satisfactory explanation/ diagnosis (this was confirmed by both patient and GP). These criteria have been used by other researchers as well (Peveler et al., 1997; Salmon et al., 2004) and have proven to be applicable in family practices. Nevertheless, the sampling procedure demonstrated that defining mild or early chronic MUS was not an easy task, although it has been shown that the prevalence is high in primary care (Fink et al., 2005). The GPs in the study often seemed to confuse a diagnosis with a descriptive explanation. They focused on comorbidity and did not see the patient’s symptoms as unexplained, and they were unwilling to use the term MUS often because it implied that their usual professional approach was discharged. Also, the patients themselves played an important role in this definition problem. Several of the patients acknowledged the probability of them having a MUS condition, but for different reasons many did not volunteer. One of the main reasons for this might be the difficulty of labeling their symptoms ‘unexplained’ during a health-seeking process. Such a label in itself suggests marginalization. The label seems to be useful as a working or research concept, but by definition it indicates a retrospective view: it is applied when nothing else can be said about one’s suffering. It is a critical step to take to maintain the identity of being unexplained. Those who agreed to participate in the study seemed preoccupied with their condition, and this had already severely influenced and brought many changes into their lives. The sampling difficulties point to problems with the diagnostic criteria of MUS (Creed, 2006; de Gucht and Maes, 2006; Kroenke, 2006; Sharpe et al., 2006; Sykes, 2006), rather than to limitations with the methodology of this study. The final sample and data collection provided in-depth information about the aim of this research. The nine informants (one man and eight women, aged 31, 20, 20, 21, 22, 33, 42, 47, 58) were interviewed several times, ranging from one to five interviews with each informant, in total 22 interviews. The interviews were performed during an 18-month period, the majority, however, during the last seven months of the second sampling round. Interviews were conducted in the informants’ own homes, with the exception of only a few who preferred to come to the research clinic. All the informants had new physical symptoms, but due to difficulties with classification and sampling criteria, some proved to have longer symptom histories than expected. The interview guide was constructed to cover topics such as: illness behavior/ illness perception/health-seeking behavior/social relations and functions/ everyday life and priorities, future and visions. The researcher was not present during consultations with the GPs and has based the analysis on the research interviews alone. The interview data were transcribed verbatim and coded into the data management program Nvivo 7.0. Initially, the transcriptions were read thoroughly, and a first-level open coding was made for contents. A secondlevel coding was made for themes and categories. The final analysis was 509
health: 13(5) based on a pragmatic and phenomenological interpretation (Dewey, 1929; Schutz, 1972) of meaning categories and themes. Illness explanations were found to be dominant and were compared among each other. Theoretical literature on this phenomenon together with the empirical data resulted in the concept of explanatory idioms as the main analytic category for explaining illness.
Explanatory idioms Talking about one’s illness and health condition is always closely connected to a person’s social life world and cultural context. Illness explanations or even narratives told by patients with MUS have been demonstrated by other researchers (Nettleton et al., 2004, 2005). The explanations have been shown to be dependent on, who the illness story is told to (Dalsgaard, 2005), and also to change according to illness phase (Whitehead, 2006). Also, a variety of different causes and etiologies have been found. These explanations have, however, often been related to individual illness experiences and not so much to an analysis of how they may be employed in and be dependent on, for example, clinical communication. Explanations exist in different spheres of legitimacy and refer to different discourses of illness, constructing what it is possible to talk about and how. For patients with MUS everyday life processes and pragmatic and social processes guide the individual into certain ways of talking about illness (Ware, 1999). Each of these ways may constitute coherent legitimacy and comprehension of illness symptoms. One may talk about – at a social and cultural level – constructions and meta-explanations, for example styles of reasoning (Hacking, 1992) for structuring illness experiences. An individual may therefore rely on several explanations, depending on specific contexts, situations and cultural spaces, to legitimize each explanation. Such an explanation is defined as an idiom of distress according to Nichter (1981) and Whyte (1997), in the sense that it constitutes situations and at the same time is dependent on mutual understanding. This makes the idiom dynamic and part of a social process. The data in this study revealed a pattern of illness explanations, and the idioms emerged during analysis. Often expressed simultaneously or consecutively their social contexts overlap, and coherence and legitimacy may well be experienced, although informants use more than one idiom to explain their suffering. Still each idiom expresses meaning and coherence within itself, and draws upon its own distinct representation of suffering. The idioms express a continuing process and development of individual illness experiences, engaging different social realities. The idioms found can be divided into four groups: (1) a symptomatic idiom; (2) a personal idiom; (3) a social idiom; and (4) a moral idiom. Basically the symptomatic idiom refers to talking about and trying to find a cure for the physical symptoms, felt and experienced as debilitating and 510
Risør: Illness Explanations Among Patients constraining. Behind the use of this idiom is a bodily experience, and it is assumed that the suffering is caused by a physical disorder. This experience leads the informants to visit presumed experts of the symptomatic idiom, for example, the general practitioners or other medical specialists. The symptomatic idiom parallels the paradigmatic idiom found in biomedicine. However, no patient with MUS stops at this idiom, but develops parallel explanations and understandings while trying out different treatments, talking to friends and relatives, having time to think or seek knowledge – exploring their embodied experiences. The personal idiom expresses a person’s liability to illness as certain personal characteristics or profiles, as aspects of the psyche and as the connection between emotions and body. These aspects are also causes of the patients’ sufferings. Several of the informants frequented psychologists or spiritual healers in order to do something about the inherent causes, expressed through the personal idiom. The personal idiom refers to a way of understanding personality traits and psychology, and does not deal with perceptions of, for example, personality disorders, strictly corresponding to a psychiatric diagnosis or professional psychiatric knowledge. Through the personal idiom deviations from the normal or the well-balanced person are also expressed, indicating that balance in itself is the goal in order to be healed. Using this personal idiom patients with MUS operate with psychological and emotional aspects of their disorder, not being unwilling to acknowledge these aspects as relevant illness explanations. This is in accordance with Salmon et al. (2004) and Ring et al. (2005) who found that patients with MUS articulate psychological clues, but their agenda is often unheard by the GPs, who focus on the somatic aspects of the complaints. The social idiom refers to a dominant and prevailing way of explaining MUS, that is, as an illness caused by environmental factors, work situations and general social life constraints. Often stress is mentioned as the decisive element, that leads to an outbreak of symptoms. Stress is thought to be caused by external factors such as certain social conditions or work conditions. The informants take steps to improve these social situations, but always as personal quests and individually based solutions, contradicting the structural etiology inherent in the idiom. Some manage to overcome their social problems or change their stressful and unsatisfying work situations to new jobs or new positions that comply with the basic priorities of their life. But only after a period of sick leave – and still on their own initiative. Finally, the moral idiom is engaged, as the patients now and then take an overall view on their illness situation and try to add meaning and coherence to it. ‘Finding meaning within madness’ as an informant expressed it, referring to madness as both suffering and the attempt to grasp a sense of coherence at an existential level, that in itself is a chaotic and maddening experience. The moral idiom also deals with the attempt to consider what the essence of one’s life is: what is good for you, what do you want from life, what should be prioritized and what kind of self-image is preferred? 511
health: 13(5) In other words, the moral idiom indicates, what is at stake in one’s life at an existential level, and what social processes one engages in and why.
Moving between idioms Half of the informants were young people in their 20s with mild to severe experiences with MUS and with a recent symptom history. At present they were affected by their symptoms to such a degree that it had changed their course of life, and they were all eagerly trying to find the means to relieve their symptoms in order to get back to their normal level of functioning. In these attempts they hoped that especially their GPs would be able to help them with specific physical problems, employing the symptomatic idiom: ‘It was like stomach cramps and headaches and a sore throat, hmmm, so I decided better to get it sorted out … Because, there is something inside my stomach that isn’t right’ (Hanna). Hanna (20 years) sees her GP a few times, and blood samples are taken without a positive result. To me she expresses her disappointment with the GP, because he never took the time to ask about her personal life or her own opinion of her symptoms. She felt dismissed by him, with no tangible explanation to move on with (Salmon et al., 1999). At the same time she is worried about her symptoms and keeps wondering, what could be the matter, and what might have been overlooked. In this wondering she resorts to a social idiom, which she had not discussed with her GP. She believes that her new life as a university student and the many new people around her may have an influence on her symptoms. Her social idiom contains not only ideas about etiology but also about treatment, in this case a restructuring of social relations and contacts. At another explanatory level we find Hanna’s doubts about her choice of university study. This belongs to her personal idiom of illness. She has chosen to study medicine, although she is in doubt whether this is right for her, or whether a more humanistic study would have been better. This is connected to her perception of herself and her personal identity. Who is she, basically, and what should she study? These questions are indirectly linked to possible causes of her symptoms, as she recognizes a connection between her physical condition and her psychological well-being: Really, it is clearly a combination of both, because the two things interact and then of course new studies, it also influences one psychologically, yes … and the psychological turns into the physical and then suddenly it becomes psychological again, because you feel ill and you feel bad about not being able to keep up and so on.
Simultaneously Hanna is able to handle an illness explanation idiom based on a physical explanation as well as an idiom based on causes lying outside her body, in the social and environmental area, and finally to combine these with a personal idiom. According to Hanna neither social explanations nor the personal idiom are brought up during the consultation with the GP. Although the GP has a somatic approach, which Hanna in general is satisfied 512
Risør: Illness Explanations Among Patients with, she also feels that he does not cover enough of the explanatory aspects. However, she keeps the other idioms to herself and tries to manage the condition according to her interpretation of her social and personal life. Both culturally and bodily determined the symptomatic idiom is in many ways the most immediate illness explanation for all the informants. Conny (21), who has irregular heart beats, faintings and muscular pain, says: because I still feel that it is connected to [something] physical, as I said, I would also like just to know what it was, obviously, even though it was nothing serious, just in case, so you know how to handle it.
The symptomatic idiom is, as indicated here, an idiom that contains expected action. It must be possible to do something about the symptoms, and the symptomatic idiom is constructed discursively with an inherent prospective solution. The belief in this often makes the informants return to their GPs. An informant’s conviction that the symptomatic idiom is predominant and the most relevant explanation within a clinical setting creates divergence, if the GP introduces other idioms, especially psychological ones. Both Conny’s and Lora’s GPs (two different ones) try to engage their patients in other explanations. Conny is examined thoroughly for physical disorders, though her GP at the same time tries to discuss with her possible stress, emotional aspects, depression and anxiety, which in the GP’s idiom are related to psychological or psychiatric disorders. Conny does not deny that anxiety could be part of her problem, and she is willing to try anti-depressants. Her reason for that is grounded in a social idiom, because she sees her anxiety as being caused by her physical problems and subsequent worries, partly created by the mechanisms of the health system: as I said, I came with a physical problem and it is … as the process of going to the doctor and going through physical examinations and everything has taken so long, so through all this I have continued to believe that something must be wrong in my life. You know, you are sent here and there and examined over and over again, so you easily feel that there must be something wrong, right?
She also brings up ‘stress’ and ‘strain’ caused by her study and work, and she sees those parameters as possible causes of her symptoms. This explanation is both social and personal, as she connects it with her own ambitions and a tendency to stress as a personal characteristic, influencing her stress level and consequently her physical symptoms. These thoughts bring her to the moral idiom, as she starts wondering about her present life as a whole, her personal ambitions, her physical reactions and her social relations. They all seem to create prospects of the future that she would like to change. She would rather lower her ambitions, than lead a life in constant strain, with physical symptoms and worries as a consequence. Conny employs all these different idioms concurrently, also when she receives a medical explanation for her fainting fits and irregular heart beats. However, the symptomatic idiom is the most important to her, especially since the medical explanation does not cover all her symptoms. Other explanations are still prominent and 513
health: 13(5) relevant to her, even when she is reassured by the physical explanation, and although she knows what to do to avoid physical symptoms and subsequent anxiety. The other idioms exist and are applied in other settings. Lora (22), who has a herniated disk with subsequent paralysis, is convinced that her herniated disk and the damaged nerves are the physical cause of all her pain. Her surgeon at the hospital supports this explanation, but her GP does not. Lora is met by a GP, who tries both to engage her in a talk about personal and psychological problems, and a talk about a change of life through work or education. Lora, however, declines. She believes that she has solved her family problems herself and does not suffer from emotional distress, only physical pain, and maintains that her family background has nothing to do with her current condition. This is how she expresses her opinion to her GP. But simultaneously she is very much aware that poor social relations, emotional distress and stress in general influence her bodily symptoms and her mental condition – referring to both a social and a personal idiom. As for the social idiom Lora is not declining the idiom per se, she merely declines the way the GP goes about it. She has made a decision about her life, which includes many activities that she loves, and the conviction that work or having an education is not the cure for her right now. Her social cure is to lead a good life with her husband, to have a baby, to continue to ride her horse and to live a stress-less life. Although the symptomatic idiom is dominating, it is not, in her case, connected with treatment, because there seems to be none. Instead one could argue that she employs her social and moral idiom to search for alleviation. In this she finds strength to maintain her good social relations, and she finds a meaning with life, comparing her former stressful life with her now calmer future prospects. Employing the personal idiom shows that she suffers from the personal ‘want to do everything myself’ trait, which often causes trouble, pain, and sorrow, and she ultimately blames herself: it is my own fault, that I fell off [the horse], I could have … I had just bought my new horse, that I have now, and I took the chance. I didn’t know it, so it is my own fault that I fell, so I can’t complain.
But in the end, she does not just lie down on her sofa feeling sorry for herself, she rather jokes about her symptoms and tries to continue a meaningful life. All these cases show the development of concurrent explanatory idioms. Especially the symptomatic idiom is pertinent in clinical settings, and going from one idiom to another in such a setting requires a mutual understanding of idioms. What the patient sees as personal or social is not necessarily the same in the GP’s version. Other idioms seem to become prominent and relevant in everyday social settings, outside clinical encounters.
Beyond the symptomatic idiom Half of the informants have suffered from their symptoms for years rather than months. They have chronic conditions of MUS. Basically this half of the 514
Risør: Illness Explanations Among Patients informants suffers from severe fatigue and muscular and/or joint pain, for which they have developed several alleviating strategies in their everyday life. In their narratives the detailed descriptions of the development of the physical symptoms and healing processes are striking. Many different idioms are employed throughout this process, also after receiving a diagnosis, if they get one. A few received the diagnosis fibromyalgia. This changed the perception of the condition from being an isolated, though severe, nuisance in their life to a chronic condition, determining almost all their thoughts and actions. The symptomatic idiom is often applied when the body is the center of the informants’ explanations. The body aches, the body fails them and puzzles them with intermittent symptoms and it does not function normally. This is a process that for some can take up to a few years, for others longer. During this period they consult GPs, receive physiotherapy, go through different medical examinations, but also try to endure, almost ignore, their symptoms and adapt to functional changes until, seemingly, they finally succumb to depression or constant pain. Other idioms do not lose their legitimacy because a medical explanation has been found, and a diagnosis such as fibromyalgia is not considered the ultimate justification to their illness experience. It is seen as a proof for themselves and others, that they are indeed sick, but not as utterly meaningful information (Madden and Sim, 2006). Speculations about their condition continue – outside clinical settings – and the different idioms are employed alternately, but with less and less weight on the symptomatic idiom, in an attempt to explain the physical symptoms in other ways instead. The personal idiom is used in this way. Susan (47), who has suffered from pain in the joints for many years and recently obtained several psychiatric diagnoses, is convinced that she has damaged her joints somehow. At the same time she believes that she suffers from PTSD and has a vulnerable personality. Apparently there is no hierarchy among these explanations, and they all make sense to her as different aspects of her illness perception. The same is seen with Karen (42), who blames her own ambitions and constant personal striving towards perfectionism for her final breakdown. She explains her fibromyalgia as something that lay latent in her personality and body until things accumulated, and external circumstances and stress made it break out. Mona (33 years, muscle pain, fatigue, fibromyalgia) also blames her own weaknesses as an individual – a tendency to self-destruction which gives her a depressive mood. She uses the same internalizing idiom when she talks about her distorted psyche. In her words it is not only her back that is distorted, but also her psyche, and if she could ‘straighten it’, perhaps she could move on with her life. Mona also has her own philosophy about her ‘kind of people’: it is also really typical for us with this disorder, I mean we are the kind of people who give too much sometimes … you abuse yourself somehow, and in a way you
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health: 13(5) forget yourself, I mean to consider yourself; in reality you use and use and use yourself up, so much that in the end you are worn out, in all possible ways.
This example of a personal idiom is linked to both a symptomatic idiom and social circumstances. The social idiom is here related to circumstances in life, marriage relations, family and work, expressed both as enhancing factors and as actual causes. Karen also uses a social explanation together with the personal idiom, when she combines stress and fibromyalgia with her own ambitions and a tendency to work too much without pausing and resting. Mona sums this up combining the symptomatic idiom with both the social and personal one: For me this is about, partly that I have a hypermobile spine, and of course it is weak, and when you have hard physical labor, then it is under too much strain, and when I have gone through all these things with the divorce and everything, well then you become more strained because you are so emotional, I mean yes a bit psychosomatic, you shrink and …
Over time the idioms developed, changed emphasis and different combinations were made. The length of the study provided insight into how social contexts prompted certain idioms and suppressed others. Apart from the predominance of the symptomatic idiom in clinical contexts (GPs and a rheumatologist), the family and network formed the frames for employing the other three idioms.
The moral idiom The moral idiom is more prevalent among chronic MUS patients than among the rest of the informants. However, what is seen in general are attempts to find out what went wrong, what is good for oneself and what to do about it – a deeply moral quest: there is a meaning with it and it had to be stopped, my lifestyle was all wrong, right, I mean I didn’t take care of myself, and I did not use myself and my resources, I mean I didn’t use my education and so on, I mean at work I actually just slogged away and made myself believe it was okay and it was, though not in the long run, you know, so somewhere my life told me: hey, you are on the wrong track, here this is a chance, a new chance. (Mona) but I also understand, that if I should pull the brakes, then something had to pull them for me … was it a message, that I should feel so constrained by my body, that I had to stay still, so that I was here and available for the children? (Karen)
Simultaneously the moral idiom indicates what went wrong in their life and points to future perspectives and new opportunities. In this way it seems to be connected with the social idiom. The social idiom points out possible tangible causes of an illness and is regarded as an important field that determines the content of your life. Often it seems possible to change elements of the social idiom, and the wish to do good things also leads to making social changes in one’s life. Consequently the moral idiom is 516
Risør: Illness Explanations Among Patients included in the social idiom as well as the personal, and becomes an idiom in which the meaning of suffering is expressed. Basically this meaning is expressed as giving life another direction, adding peace and balance to one’s life, feeling good about what you do, and making the right choices. According to the informants the moral idiom is rarely expressed in a clinical setting, but is nevertheless important for all the informants as a guide to coping and to alleviation.
Concluding discussion This study reflects the illness explanations of a sample, which turned out to consist of informants with a high level of consciousness concerning their MUS – less distinct and perhaps more opportunistic explanations may be found among patients with milder degrees of MUS. The above described idioms are, however, important as social constructions of illness explanations. More could probably be said to differentiate the idioms from each other, but what I have tried to show in this study is primarily, that the only idiom, which is conceptually shared by patients with MUS and their GPs, is the symptomatic idiom. The other three idioms belong to everyday life and social settings, which determine their content and inherent understanding through other styles of reasoning than the medical one. One could argue that, for example, the prominent bio-psycho-social approach in family practice should include all idioms. However, I believe that this model is based on its own three styles of reasoning, related to three different scientific disciplines. They are far from everyday reasoning, although at a glance they may seem similar. Often the patient does not respond to the GP’s attempts to bring forward this model in a consultation – instead there are discrepancies between applied idioms. Or the idioms brought up by the patient are unheard, because the GP does not respond either. Some studies, among these Banks and Prior (2001), conclude that it is the patients who seek to restrict the consultation to deal with physical problems alone, and that the physician prefers the ‘bio-psycho-social’ frame. However, the study analyses the clinical communication only and treats it as a political field at the same time. Taking this into consideration it supports my statement that the clinic itself frames the possibility of patient approaches, and that this frame may not be compatible with all idioms found in this study. A variety of multicausal explanations to disorders, experienced by patients with MUS is revealed in other studies as well (Helman, 1985; Dalsgaard, 2005; Soderlund and Malterud, 2005). In a group of women with chronic fatigue, Soderlund and Malterud point to the same complexity of explanations as shown here, and indicate the prevalence of analytical idioms. Clinical studies have shown that often such explanations are presented or suggested in clinical settings, but are overruled or unheard (Salmon, 2000). The existence of these explanations or idioms challenges the presumption that patients explicitly insist on a physical cause. Also the GPs’ liability to 517
health: 13(5) conceptualize that MUS is a presentation and a product of psychological distress is challenged (Wileman et al., 2002; Woivalin et al., 2004). This has often restricted the GP to deal with one idiom and to ignore others, creating a clinical situation bound to break down (Kirmayer, 2000), since no negotiation of explanatory idioms takes place. The discrepant idioms belong to different discourses and social situations. The idioms used by the patients are, however, interchangeable and can be concurrent. They are employed with different emphasis at different times and in different social situations, and especially the symptomatic idiom is used during GP consultations, because it is expected to coincide with the GP’s idiom. But it is not the only idiom of significance for patients with MUS. The identified idioms are presented by all the informants, although varying during the course of the illness. It is suggested that informants in the early stages of MUS often rely on the symptomatic idiom in their search for explanations. This is to be expected, but not that the idiom, in later stages, seems to lose significance and is replaced by other idioms. Especially the social idiom prevails among all the informants as significant, which supports the approach taken by, for example, Kleinman and Becker (1998) and Ware (1998). In order to investigate sociosomatic explanations in contrast to psychosomatic explanations, more specific research on this topic is necessary. The moral idiom is brought up, primarily when symptoms start to have chronic aspects. This is expected to happen when deliberations on how to live and reform your life become important (Åsbring, 2001), but the moral idiom also emerges in the early stages and can – if investigated further – turn out to be the most important explanatory idiom for MUS patients’, though the most difficult to convey in general practice. Knowledge of illness explanations constructed outside the clinical settings may give clues to patient agendas, surfacing during consultations, and take the personal, social and moral idioms of MUS into account. These idioms may be prevalent for patients with other chronic illness courses as well, since they emphasize the cultural aspects of an illness process, embedded in everyday life. The idioms may supplement the bio-psychosocial model, but they are not identical, as they are related to different styles of reasoning (Hacking, 1992). Doctor–patient communication could benefit from applying the concept of idioms to other settings than MUS consultations, but including these idioms in the dialogue and negotiation of illness explanations is of special importance for patients with MUS because of the lack of treatment opportunities for this disorder (Kirmayer et al., 2004; Salmon, 2007).
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Author biography mette bech risør is a PhD and senior researcher at the Research Clinic for Functional Disorders and Psychosomatics, Aarhus University Hospital. Trained in medical anthropology she has recently conducted a research project on the social construction of illness behavior among patients with medically unexplained symptoms as well as a study on health promotion and smoking cessation among pregnant women.
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