“Sleeping My Life Away”: Experiences of Living with Idiopathic Hypersomnia

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OBJECTIVES: Individuals with idiopathic hypersomnia (IH) report several subjective emotional and cognitive symptoms, as well as impairments in daily functioning. Coping strategies are frequently used, but their effectiveness is perceived to be minimal. The aim of the present study was to delve into the patient perspective on navigating life with IH, emphasizing patients' personal narratives. METHOD: Utilizing a purposeful sample method, twelve participants diagnosed with IH underwent telephone interviews guided by a semi-structured protocol. The interviews were subjected to thematic analysis to extract relevant themes. RESULTS: Analysis unveiled three primary themes along with subthemes: 1) Being confined, characterized by excessive daytime sleepiness, negative emotional processes and cognitive disturbances, 2) Missing out on life, involving loss of time and adverse social consequences, and 3) Trying to cope, encompassing strategies like napping, adapting, activating oneself and mentally fighting sleepiness, while also embracing acceptance and self-compassion. CONCLUSIONS: The identified themes reflected numerous aspects previously reported to be associated with living with IH. Notably, the study brought novel subthemes to light, such as the existential dilemma of "sleeping one's life away" and feelings of guilt and shame. Furthermore, the study underscored the significance of acceptance and self-compassion as coping strategies.

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