Elsevier

Social Science & Medicine

Volume 62, Issue 5, March 2006, Pages 1167-1178
Social Science & Medicine

‘I just want permission to be ill’: Towards a sociology of medically unexplained symptoms

https://doi.org/10.1016/j.socscimed.2005.07.030Get rights and content

Abstract

A significant proportion of symptoms are medically unexplained. People experience illness but no pathological basis for the symptoms can be discerned by the medical profession. Living without a clinical diagnosis or medical explanation has consequences for such patients. This paper reports on a small qualitative interview-based study of 18 neurology outpatients in England who live with such medically unexplained symptoms (MUS). The findings broadly concur with those identified in the related literatures on medically unexplained syndromes and unexplained pain: the difficulties of living with uncertainty; dealing with legitimacy; and a resistance to psychological explanations of their suffering. From a thematic analysis of the interview data we identify and elaborate on three related issues, which we refer to as: ‘morality’; ‘chaos’; and ‘ambivalence’. Although this article presents empirical data its aim is primarily conceptual; it integrates the findings of the empirical analysis with the existing literature in order to try to make some sociological sense of the emergent themes by drawing on sociological and cultural analyses of risk and the body. We draw on Bauman's concept of ambivalence to suggest that the very processes associated with more precise ‘problem solving’ and ‘classification’ do, in fact, generate even more uncertainty and anxiety. On the one hand, we seek closure and certainty and yet this leaves no means of living with uncertainty. Indeed, society does not readily grant permission to be ill in the absence of disease. We conclude by suggesting that an appreciation of the experience of such embodied doubt articulated by people who live with MUS may have a more general applicability to the analysis of social life under conditions of late modernity.

Introduction

This paper aims to contribute to an emerging literature on the sociology of medically unexplained symptoms (MUS) by reporting on a small qualitative study into such experiences. It is argued that those who experience debilitating symptoms for which there is no explanation, label, diagnosis, prognosis or treatment invariably endure a significant degree of embodied doubt and uncertainty. After reporting on some empirical findings the paper draws upon sociological and cultural theorisations of the body, risk and ambivalence in order to try to make sense of the ‘problem’ of illness in the absence of any abnormal pathology. It is suggested that the experience of living with MUSs is not only shaped by contemporary society but, in many respects, is emblematic of it. This is because a demise of social classification and social categories, and a concurrent rise in perpetual insecurity, risk and anxiety are all hallmarks of late modernity. Before turning to these sociological considerations however, we begin by outlining the nature and prevalence of MUS. We then review briefly the related literature on ‘contested conditions’ in order to locate our empirical study, the findings of the latter concur with those identified in this literature. Although this article presents empirical data its intention is to engage with conceptual literature and so it is primarily theoretical in its orientation. It integrates the findings of the empirical analysis with the existing literature in order to try to make some sociological sense of the emergent themes. We conclude by suggesting that an appreciation of the experience of embodied doubt articulated by people who live with MUS may have a more general applicability to life in the late modernity.

Section snippets

The nature and extent of MUS

The term MUS is now used as a ‘label’ to include those patients who have symptoms that have no identified organic basis. That disease can be located within the anatomical frame forms the basis of the biomedical model and the clinical method, that have their roots in the pathological anatomy developed within the context of the medical ‘clinic’ of the 18th century (Foucault, 1973). The idea that the origins of disease are located within the interior space of the body continues to dominate both

An emerging sociology of uncertain illness

There is sociological literature that has examined people's accounts of ‘named’ syndromes that have no pathological basis. Examples of such syndromes (as opposed to diseases) include: myalgic encephalomyelitis (Cooper, 1997); chronic fatigue syndrome (Hayden and Sachs, 1998; Horton-Salway, 2001); repetitive strain injury (RSI) (Arksey, 1998); and irritable bowle syndrome (IBS) (Adamson, 1997). There is also a literature which has examined how patient's account for, and experience, ‘unexplained’

Reflexivity and ambivalence

The vocabulary associated with modernity is typified by terms such as tradition, structure, social divisions, hierarchy, social class, progress, and experts. Descriptions of late modernity by contrast are peppered with terms such as; detraditionalisation, individualisation, fragmentation, deregulation, life planning, choice, insecurity and perhaps most of all uncertainty (Beck, 1992; Bauman (1991), Bauman (1997); Giddens (1991), Giddens (1994)). As Bauman (1997, p. 21) points out, although

Study method

A qualitative interview-based study of participants who attended for review in a neurology clinic in a hospital in England was carried out in 2003. The patients had a range of symptoms but did not have a current clinical diagnosis or diagnostic label. All the patients (N=24) who attended an outpatient's clinic over a period of 8 months and who were considered by a neurologist to have ‘unexplained symptoms’ were sent an ‘opt-in’ questionnaire by the hospital clinic. The opt-in questionnaire was

Living with MUS

The experiences of the participants of this study seem to resonate with those reported by the sociological studies of people living with contested or unexplained illness discussed above. Table 1 includes the responses to the question: ‘what is the biggest impact of living with symptoms which are not diagnosed?’ The responses are instructive as they highlight some of the key themes that recurred during the in-depth interviews which we summarise below.

Classifications of ‘disease’ and ‘illness’ in a risk society

Cultural anthropology informs us that there is dialectic between how social and physical bodies are perceived. As Doulgas famously put it:

The social body constrains the way the physical body is perceived. The physical experience of the body, always modified by the social categories through which it is known, sustains a particular view of society (Douglas, 1970, p. 65).

The body from this perspective constitutes a ‘natural symbol’; a representation wherein we can discern social metaphors and

Conclusion

This paper reports on an analysis of people's experiences of living with MUS. The findings resonate with those of other sociological studies of illness that has no identified organic basis. In particular the themes of morality, chaos and ambivalence where discussed in an attempt to communicate a sense of the experiences of the study participants. But in order to try and make further sociological sense of this material we located the findings in the context of broader social transformations

Acknowledgements

The ESRC funded the study that is reported in this paper (Project No: R000223871). I am grateful to the comments of the anonymous referees of the paper and advice and support from Ian Watt, Lisa O’Malley, Philip Duffey, Roger Burrows and Ulla Gustafsson.

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