Understanding the narratives of people who live with medically unexplained illness

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Abstract

This paper reports on a qualitative study, which explores the narratives of patients, who live with medically unexplained symptoms (MUS) and who have not secured a diagnostic label. Interviews were undertaken with 18 participants (5 men and 13 women) who attended a neurology outpatients department in the UK. Three features of the patients’ narratives identified are: the ‘chaotic’ structure of their illness narratives; concern that symptoms may be ‘all in the mind’; and their status as ‘medical orphans’. All the patients acknowledge that diagnosis is difficult and accept that a medical explanation will invariably be possible. However, they are more concerned to secure some form of ongoing medical and social support. An understanding of both the structure as well as the content of patients’ narratives of undiagnosed illness may contribute to the development of more effective and sensitive patient centred care.

Introduction

Developments in modern medicine such as the advent of imaging technologies, the human genome and biotechnology mean that diseases can be predicted, detected, treated and managed with greater effect than in any historical period. And yet, ironically, there is still a significant amount of illness, pain and discomfort that remains ‘medically unexplained’ and poorly understood. From a historical perspective this ‘problem’ emerged alongside the rise of pathological anatomy. Thereafter symptoms were relegated to being subjective manifestations of signs which in turn were objective alterations in the body and formed the basis of disease. ‘As a result’, writes Aronowitz, ‘many patients lost their symptom-based and clinically based diagnosis and became “medical orphans” [1]. Hitherto research into ‘medically unexplained symptoms’ has focussed on the reliability of diagnosis [2], the demographic and social characteristics of patients [3], their mental health status [4], the benefits of psychological therapeutic interventions [5] and the impact on doctor-patient relationships [6], [7]. Good practice guidelines tend to be contested and generate controversy [8]. This may be compounded by the fact that we have limited appreciation of the views of patients themselves. Whilst the benefits of exploring patients’ narratives have been recognised [9], as yet we have little knowledge of the stories told by this group of patients. Our focus here, therefore, is on those patients whose symptoms are not only unexplained but, in addition, have not secured a descriptive diagnostic label. There is now a significant literature on patients who live with clinically unexplained conditions such as RSI [10], CFS [11], ME [12] and chronic pain [13], [14]. People, who live with these medically unexplained conditions, do at least have a diagnostic label and so they may have recourse (however, precarious) to some form of categorical identity and may turn to a support group or specialist clinic for help. The focus of this study is, by contrast, on those patients who have no coherent sense of what their seemingly disparate symptoms may amount to. They have no diagnostic label. We undertook an investigation that aimed to understand the narratives of neurology patients with unexplained, undiagnosed symptoms. We selected neurology because there is a relatively high prevalence of unexplained illness. An estimated 20–40% of patients referred to neurology have MUS [15].

Section snippets

Recruitment and interviews

The study participants attended a neurology clinic in a UK District General Hospital and had a range of symptoms but did not have a current clinical diagnosis or diagnostic label. Approval from the Local Research Ethics Committee was secured. All the patients who attended an outpatient’s clinic over a period of 8 months and who were considered by a neurologist to have unexplained illness were sent an “opt-in” questionnaire (N=24). The questionnaire elicited data on the patients’ age, gender,

Chaos narratives

Although there was considerable variation in the detail of the patients’ lives, when we considered the structure of the narratives they shared many of the features of chaos narratives. They were characterised by with confusion and uncertainty. There is no clear-cut problem which lends itself to treatments (as would be the case for the restitution narrative), and so there is no clear beginning or end, there are ‘no route maps’ for a ‘metaphorical journey.’ Indeed they lack any sense of an

Discussion and conclusions

Whilst qualitative research does not aim to produce findings that are generalisable to a wider population, the narratives described here were consistent in the issues they identified, and this study may therefore highlight matters that are relevant to this group of patients. However, the sample was drawn from a single specialty and may also be biased towards those patients who are willing and able to talk about their experiences. Indeed, some patients withdrew because they did not feel well

Acknowledgements

The research reported here was funded by the Economic and Social Research Council (ESRC) award number R000223871.

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