Abstract
Background: Chronic fatigue syndrome (CFS) is a disabling disease that occurs among individuals across cultures and ages. Despite ample research, chronic fatigue syndrome is still poorly understood, and the ongoing debate on CFS reflects the intensive controversies linked to the disease. Patients often experience misconceptions and prejudices which constitute an extra burden. Research on adolescents with CFS is limited, especially from the patients’ perspective. Adolescents with CFS have reduced school attendance, spend less time with friends, and research indicates that living with CFS affects the adolescents quality of life negatively. Despite this, there is still limited research on HRQOL in this group. Pain is a significant additional burden in patients with CFS, however, also still insufficiently studied.
Aim: The overall aim of this study was to get a broader insight into, and more knowledge about being an adolescent living with CFS as the adolescents themselves experienced and narrated it. Additional aims were to explore pain and health related quality of life in adolescents with CFS and healthy adolescents, and finally to compare the two groups.
Methods: One hundred and twenty adolescents with CFS and 39 healthy adolescents (12-18 years) participated in this cross-sectional, mixed method study. The participants answered self-administrated, generic questionnaires to investigate HRQOL, depressive symptoms and pain. Algometry was used to measure pressure pain thresholds. A sub-sample of 18 adolescents with CFS were interviewed in depth about their experiences of living with CFS.
Results: The interviews revealed that the adolescents with CFS felt different from and forgotten by peers. They felt lonely and as outsiders, not being able to attend school and follow their peers as they moved on with their lives. Further, they felt alienated from their own bodies and different from who they used to be before they got ill. The quantitative work showed that the adolescents were severely impaired by pain compared to the control group of healthy adolescents. They also had significantly lower pressure pain thresholds compared to the healthy adolescents. One surprising discovery, however, was that despite the severity of pain, mapped by the questionnaires, physical pain was not a subject the adolescents focused during the interviews. Health related quality of life was low on all domains in the adolescents with CFS, even lower than we anticipated and far lower than in the healthy controls.
Conclusions: The integration of the qualitative and quantitative work in this study has provided more knowledge and a broader insight into the life of adolescents with CFS. Their self-understanding and development of identity are challenged when the illness make their body unfamiliar and narrows their ability to participate in “real” life. Experience of belonging might prevent mental health problems and possibly improve their health related quality of life. Despite the serious impact of the self-reported physical pain, the pain focus was different from what we expected. For adolescents with CFS, difficult feelings and existential thoughts might be equally, or even more painful than the physically measured pain. To verbalize difficulties related to their illness might be challenging and words might as well be insufficient. Awareness towards body language and other modes of expressions should be prioritized even though it might be challenging for health care professionals to prioritize time to become familiar with the individual patient’s way of expressing him or herself. Storytelling could be used as a strength and resource in assessment and treatment of adolescents with CFS.