The adolescent experience in Juvenile Idiopathic Arthritis: A narrative approach

Abstract

This dissertation focused on the self-experience of adolescents with juvenile idiopathic arthritis (JIA) or chronic fatigue syndrome (CFS). Although the etiology and nosology of JIA and CFS are fundamentally different, some commonalities in the emotional experience of adolescents dealing with these chronic illnesses have been found. The self-narratives of both patient groups contained fewer experiences in which they felt autonomous and successful compared to the narratives of healthy adolescents. Especially during adolescence, this type of experiences is essential to develop an adult identity and enhanced independence from caregivers. Although emotional problems have usually been thought of as reflecting the presence of negative affective states, and the amelioration of negative emotions has traditionally been a focus of psychological counseling, emotional experience might also become problematic when certain positive affective states are absent. While the presence of negative emotions certainly seems to play a significant role in our CFS group, the absence of certain positive emotions appears to be of importance in the emotional experience of both our JIA group, as well as our CFS group. Therapeutic focus should therefore lie on the integration and utilization of positive, as well as negative emotions, and the importance of variety and flexibility in the experience and voicing of these emotions. Although communality is found in a diminished experience of autonomy and success, adolescents with JIA and CFS position themselves differently in their social context. To generalize the results of this thesis, adolescents with CFS position themselves in accordance with their emotional experience of less positive and more negative experiences. Unwell-positions, focusing on illness and being dependent, are dominating most of the self-narratives of adolescents with CFS. For many adolescents with JIA, while experiencing less autonomy and success then their healthy peers, they position themselves as their healthy peers: healthy and strong. We expected that counseling with the self-confrontation method (SCM), a method that combines the personal narrative with its affective structure, would enable these adolescents to develop their selves and their stories and adapt to the challenges of life through a continuous renewal and shifting in the organization of their self-narrative. In our studies, the crucial ingredient for a positive outcome of narrative counseling was that the adolescent him- or herself acknowledged the negative impact of the illness on their quality of life. Health-related quality of life questionnaires proved to be a good measure to identify those adolescents that might be receptive to therapeutic help. Almost all adolescents with CFS benefited from narrative counseling by giving voice to the more suppressed sides and regaining flexibility in their self-narrative.