‘Twenty percent of my brain is dedicated to fighting sleep’: A qualitative narrative study on the educational and occupational costs of narcolepsy from the patients' perspective

BACKGROUND Narcolepsy can be understood as disabling not only due to excessive daytime sleepiness and cataplexy, but through their interaction with social barriers. Misinterpretation and stigma exacerbate restrictions in education and employment, contributing to reduced work capacity and increased financial burden. This qualitative study explores how patients perceive the impact of narcolepsy on their education and work participation. METHODS A qualitative study using narrative semi-structured interviews with 25 narcolepsy patients was conducted. Expert-validated interview guides ensured methodological rigor. Transcripts were inductively coded to create a codebook, followed by deductive thematic analysis to identify key patterns and insights. A narration was created using One Sheet of Paper method and was supplemented with patient interview segments. RESULTS The themes regarding school and workplace experiences of the patients describe misunderstanding and even discrimination in school or workplace settings due to symptom manifestation. Effective coping relied on treatment adherence, lifestyle adjustments, and practical strategies such as scheduled naps, movement during study, or tailored study plans. Narcolepsy also posed challenges in sustaining employment, leading to financial difficulties, with limited access to partial disability benefits. CONCLUSION Narcolepsy significantly affects how patients are perceived by others, particularly peers, teachers, colleagues, and employers. Symptom manifestations often reduce work capacity and performance. Effective management, therefore, requires not only medical treatment and lifestyle adjustments but also the adoption of specific coping strategies. Moreover, greater awareness and understanding within the patient’s social environment, as well as supportive policy changes, might be essential for desirable social participation.