The Language of Illness and the Evidence-Based Wor(l)d: A Possible Integration

Illness narratives are a form of sense-giving to random, incomprehensible events. Narratives provide “wounded storytellers” (Frank 1995) with a means to redefine their present identity and to regain control over their life. On the other hand, they help health professionals to understand the patient’s point of view - what was important for him, and what is still important for the future -  as well as to find out needs, informal resources, coping strategies, expectations and the degree of satisfaction with health services. In this background the paper presents the main outcomes emerging from the collection of the illness narratives of patients with multiple sclerosis and their care givers. Five patients were recruited among those in treatment at the University Hospital of Ancona (Italy); their illness narratives were jointly collected by health professionals and social researchers in the hospital setting. Further five patients were recruited among the members of the local patient association and their narratives were collected by social researchers in their homes. Special emphasis was placed on the relational perspective, investigating how patients and their relatives perceive the disease and how they cope with it, how they relate with their “changing Self”, the relationships within the family, with health professionals and social relations. The aim of the study is manifold. First of all, we intend to analyze the changes occurring in their life experience as a consequence of the diagnosis of MS and the language with which they are expressed. The second aim was to integrate evidence-based medicine with narrative competences in order to improve health services. In particular the design of health care pathways for chronic diseases must consider the experience of illness in the perspective of a co-production of care narratives.