Understanding the narratives of people who live with medically unexplained illness

• Published in: Patient education and counseling Vol. 56; no. 2; pp. 205 - 210
• Main Authors: Nettleton, Sarah, Watt, Ian, O’Malley, Lisa, Duffey, Philip
• Format: Journal Article
• Language: English
• Published: Ireland Elsevier Ireland Ltd 01.02.2005
• Subjects: Adaptation, Psychological; Adult; Aged; Attitude to Health; Communication; Conflict (Psychology); Female; Hospitals, District; Hospitals, General; Humans; Illness narratives; Male; Medically unexplained symptoms; Middle Aged; Narration; Needs Assessment; Nervous System Diseases - diagnosis; Nervous System Diseases - psychology; Neurology; Nursing; Outpatient Clinics, Hospital; Patient-Centered Care; Physician-Patient Relations; Qualitative Research; Quality of Life; Social Distance; Surveys and Questionnaires; Uncertainty; Undiagnosed illness; United Kingdom; Neurology; Undiagnosed illness; Illness narratives; Medically unexplained symptoms
• ISSN: 0738-3991; 1873-5134
• DOI: 10.1016/j.pec.2004.02.010

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.