Health and identity: Self-positioning in adolescent chronic fatigue syndrome and juvenile idiopathic arthritis

Abstract

The aim of this study is to gain more insight into basic aspects of identity, in relation to adolescent chronic fatigue syndrome (CFS) and juvenile idiopathic arthritis (JIA). In dialogical self theory, identity is regarded as incorporating multiple self-positions, such as 'I as tired', 'I as pessimistic', or 'I as decisive'. Physical and psychosocial impairment might alter the organization of these self-positions. The Personal Position Repertoire procedure, a quantitative method to analyse the prominence of self-positions, the Child Health Questionnaire, assessing health-related functioning, and the Checklist Individual Strength, measuring fatigue, were completed by 42 adolescents with CFS, 37 adolescents with JIA and 23 healthy teenagers. Adolescents with JIA report impaired physical functioning and general health. However, they position themselves very similar to healthy teenagers - i.e. as strong and healthy. While this self-positioning approach might be adequate and sustainable in adolescence, it could prove too strenuous to maintain throughout adult life. Adolescents with CFS, besides indicating severe physical difficulties, also report more psychosocial problems. They position themselves as significantly less strong and more unwell. With this emphasis on positions relating to their illness, there seems to be little room left for stronger positions. It is regarded of clinical importance to address these issues in this crucial developmental period.

A developmental arrest? Interruption and identity in adolescent chronic pain

“…This is in contrast to youth with chronic fatigue syndrome who reported weak levels of self-identity. 15 …”

Prevalence of Severe Fatigue Among Adolescents With Pediatric Rheumatic Diseases

“…This study has several important strengths. First, unlike most studies of fatigue in patients with PRDs, we measured fatigue using a validated questionnaire that is commonly used to study both healthy and chronically ill children and adolescents, with a clear cutoff value for defining severe fatigue . Second, our study included a relatively large cohort compared to other studies, with a high participation rate of 86%, thus reducing the risk of participation bias.…”

“…Fatigue is a common symptom among adolescents with pediatric rheumatic diseases (PRDs). For example, children with juvenile idiopathic arthritis (JIA) frequently report increased fatigue . Moreover, several studies have revealed that sleep disturbances and fatigue are associated with increased pain and decreased quality of life in this patient population .…”

“…For example, children with juvenile idiopathic arthritis (JIA) frequently report increased fatigue . Moreover, several studies have revealed that sleep disturbances and fatigue are associated with increased pain and decreased quality of life in this patient population . Other PRDs such as juvenile dermatomyositis (DM) and systemic lupus erythematosus (SLE) have also been associated with severe, debilitating fatigue .…”

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

“…Adolescents consecutively referred to the University Medical Center Utrecht (the Netherlands), who had previously participated in a cross-sectional study on self-positioning in relation to health [19], were included in this study. The adolescents with CFS were all uniformly assessed in accordance with the Centers for Disease Control and Prevention criteria [6], entailing an exhaustive history, and physical and laboratory examinations.…”