The Self beyond Somatic Symptoms: A Narrative Approach to Self-Experience in Adolescent Chronic Fatigue Syndrome

Abstract

BACKGROUND: The self and self-experience are often assumed to play an important role in adolescent patients presenting with severe somatic symptoms and bodily distress. Nonetheless, most empirical work on this subject is confined to studies of personality and patients' experience of negative emotionality. This study aims to move beyond mere descriptions of symptoms, traits and distress, and consequently adopts a narrative approach to self-experience in adolescent chronic fatigue syndrome (CFS). SAMPLING AND METHODS: The self-confrontation method (SCM) is a well-validated instrument to systematically analyze narrative self-experience. The SCM was used to study 42 adolescents with CFS, compared to 36 adolescents with juvenile idiopathic arthritis (JIA) and 25 matched healthy controls. The Child Health Questionnaire (CHQ-CF87) was used to assess mental health, self-esteem, and physical and psychosocial functioning. RESULTS: Both patient groups reported significantly less positive self-experience of autonomy and success compared to healthy controls. Furthermore, patients with CFS described significantly more negative self-experience of powerlessness, isolation and unfulfilled longing. In the CHQ-CF87, both patient groups scored significantly lower on physical functioning than controls. Adolescents with CFS also scored significantly lower on mental health and self-esteem. CONCLUSIONS: Adolescent CFS entails a serious threat to the self, which might be inherent to the condition. Not only are patients more impaired in mental health, self-esteem, and physical and psychosocial functioning than patients with JIA, they also suffer from a distinct combination of high negative and low positive self-experience. These findings stress the need for strategies that empower patients towards a 'management of the self'.