‘A whirlwind of everything’: the lived experience of adolescents with co-occurring chronic pain and mental health symptoms

Abstract

Background: Co-occurring chronic pain and mental health issues are prevalent in adolescents, costly to society and can lead to increased risk of complications throughout the lifespan. While research has largely examined paediatric chronic pain and mental health in isolation, little is known about the unique challenges faced by adolescents who experience these co-occurring symptoms. This idiographic study examined the lived experience of adolescents with co-occurring chronic pain and mental health symptoms to identify salient issues for this population. Methods: Semi-structured telephone interviews were conducted with seven adolescents (11–19 years) self-reporting diagnoses of both pain and mental health issues for a duration of 3 months or longer. Participants were recruited from UK-based schools, pain clinics and charities. Interview transcripts were analysed using interpretative phenomenological analysis. Results: Analyses generated two themes ‘a whirlwind of everything’ and ‘putting up fronts’, which describe how the experience of co-occurring chronic pain and mental health symptoms typically disrupted adolescents' ability to regulate their physical, psychological and social wellbeing and identity. Adolescents described their symptom experience as like an internal storm over which they had no control. Such experiences required adolescents to embrace a variety of symptom management strategies, with adolescents reporting deliberate efforts to minimize their symptoms to external individuals. Conclusion: Co-occurring pain and mental health symptoms may be experienced in similar ways to individually experienced pain or mental health symptoms, but together, the experience may be both more difficult to manage and more socially isolating. Significance: Adolescents with co-occurring chronic pain and mental health symptoms describe the experience as if there was a storm inside of them disrupting their sense of physical, emotional and social wellbeing. This inner chaos interferes with their self-identity and relationships with others. Challenges articulating their experiences, and negative encounters associated with their symptoms, further impact feelings of isolation and difficulties accessing support.

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