“It’s like tumbleweeds everywhere”: An Interpretative Phenomenological Analysis of the lived experience of being diagnosed with and living with narcolepsy

There is a lack of awareness of how sleep health and sleep disorders are experienced. Previous research has found that living with narcolepsy has a debilitating impact on several areas of an individual’s life alongside significant diagnostic delays. This study uses a phenomenological, qualitative methodology to explore experiences of being diagnosed with and living with narcolepsy. Six women with type 1 narcolepsy participated in semi-structured interviews. Transcripts were analysed using Interpretative Phenomenological Analysis. Capturing the whole illness experience of narcolepsy, our analysis illuminated three superordinate themes; ‘minimising, dismissing and downplaying symptoms’, ‘navigating the winding journey to diagnosis’ and ‘a different way of living’. Through our analysis, we are able to demonstrate the affective impact lack of awareness of sleep and sleep disorders has; resulting in significant diagnostic delays and a lack of support post-diagnosis. Findings demonstrate a need for greater awareness and increased support.