Enigmatic Illness: Narratives of Patients who Live with Medically Unexplained Symptoms

Abstract

This paper explores the narratives told by neurology outpatients in the UK who have endured profound illness symptoms and yet have no clinical diagnosis. The narratives resonate with Arthur Frank's concept of ‘chaos narrative’ in that they have no clear beginning and certainly no actual or imagined end; only the incessant frustration of living with illness that cannot be deciphered or treated. The stories reveal that where patients do not secure a medical diagnosis for their physical symptoms they find it difficult to ‘make sense’ of, or ‘reconstruct’ explanatory narratives of their illness as they have no medical theory to engage with. Among the patients’ stories, there was much talk about the fact that their illness may be ‘imagined’, or ‘fake’. While the narrators themselves may not necessarily ‘accept’ such ideas, the authors suggest that within a context dominated by the related ideologies of individualism and biomedicine, the discursive resources available to them tend to be (de)limited to psychological explanations, which in turn are considered less ‘legitimate’ than organic ones. Patients find themselves in an anomalous situation, they are in effect ‘matter out of place’ and they hover precariously in a void between illness and disease. Furthermore, because their illness does not fall within the domain of ‘medicine’, it is not apparent to whom they should ‘turn to’ for help.