Suffering, agency and care in medically unexplained symptoms (MUS). An ethnographic study of the social course and reframing of MUS in Norwegian youth

Abstract

Communicative challenges and the role of communication in making sense of symptoms are shown in the scientific and biomedical conceptualizations of the phenomenon of medically unexplained symptoms (MUS), in health communication and in the challenges of patients with MUS to understand and manage their illnesses. Little is known about young people’s experiences, how they cope with their illness and the meaning of social and moral aspects in a contemporary context of youth. The objective of this research project was to provide knowledge of perspectives, concerns and management strategies of young people with MUS, and to explore cultural and professional logics, perspectives and communicative practices that influence the development of young subjects and their health-seeking practices in everyday life and primary health and social care. The thesis is a multi-sited assemblage ethnography based upon fieldwork 1,5 year in 2015 and 2016 in a northern Norwegian town, including participant observation, interviewing, and collaborative film dialogues. Analysis was informed by anthropological theoretical discussions on social suffering, subjectivity and youth. Paper 1 demonstrates the concerns and extensive meaning-making efforts of a 16-year-old boy suffering from undiagnosed fatigue, and shows how our visual collaborative process facilitated the communication of embodied experiences and a mutual process of making sense of MUS in youth. Paper 2 identifies a broad range of professionals in school settings and primary health care engaged in interpretation, care and routine management, and demonstrates an emphasis on social explanations and a modality of communication whereby the professionals overcome communicative dilemmas. Paper 3 shows emphasis by the young participants on social consequences of their illness and identifies two modalities of self-care to overcome their suffering and navigate their social environments. Our findings also suggest however, the need to address social aspects of suffering beyond the level of the individual young person and health encounter.