This study was completed to fill the gap in our knowledge of the lived experience of persons living with narcolepsy in Australia.
Our findings suggest a misalignment between persons with narcolepsy and the medical establishment around how narcolepsy symptoms are conceptualised. We found that persons with narcolepsy often perceive the severity of narcolepsy by the level of functional impairment rather than symptom frequency. For the first time, we also identified anticipated and internalised or ‘self-‘ stigma as the main types of stigma that persons with narcolepsy often experience.
Our findings shed light on the perspectives, values, and preferences that persons with narcolepsy have around the management of care and service usage. They also highlight the substantial psychological comorbidity people with narcolepsy live with, presenting an opportunity for future research exploring the impact and possible development of stigma-related interventions.