‘Not a film about my slackness’: Making sense of medically unexplained illness in youth using collaborative visual methods

Abstract

Persistent medically unexplained symptoms have debilitating consequences for adolescents, dramatically altering their social world and future aspirations. Few studies have focused on social and moral aspects of illness experience relevant to adolescents. In this study, the aim is to explore these aspects in depth by focusing on a single case and to address how young people attempt to create social accountability in a search for meaning when facing illness and adversity. The study is based on a view of meaning as dialogically constituted during the research process, which calls for the use of collaborative film methodology and life-mode interviewing. With a dialogic–performative approach to a narrative emplotment of medically unexplained symptoms, we present Peter as intentional and purposive, and as a person who in a reflective process of meaning making claimed his own voice and developed his own strategies of coping with his illness. The analysis brings forward a narrative of suffering, hope and intentionality that is configured by the immediate limited possibilities of agency due to Peter’s medical condition. It is, however, configured to an even greater degree by aspirations, that is, to become an accountable person through social experiences and to meet sociocultural and moral expectations of being an adolescent. The study provides insight into relational and existential aspects of meaning making in dealing with contested illness in youth and points to the potential of visual and other experience-near methods for supporting adolescents in their coping attempts and in overcoming communication barriers in everyday life and clinical encounters.