‘All eyes were on me.’ A narrative study of patients' and the Public's reactions to narcolepsy symptoms and disease

Narcolepsy is a chronic neurological disorder that causes excessive daytime sleepiness, cataplexy and nocturnal sleep disruptions with parasomnia. General knowledge about the disease is usually lacking in the population, which can cause preconceived notions and disparagement based on the disease symptomatology. 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. This paper focused on identifying the reactions of patients and their surroundings to the symptoms and on the received diagnosis. Throughout the interviews we identified five major topics: what people think about the symptoms; how they react to them; patients being in the spotlight; how patients perceive the reactions of others; and how the families and surroundings react to the disease diagnosis. Narcolepsy is little known in the general and clinical public, which causes problems with delayed diagnostics or misdiagnoses, as well as with social burden in the everyday surroundings of the patient. The findings from this study may be beneficial for spreading awareness about the disease and its impact in clinical and general settings. • People often misjudge symptoms manifestation for alcohol intoxication or drug use • Others make fun of the patients, record or photograph them while manifesting EDS • It is distressing for the patients to be “in the spotlight” due to the gazes of others • Receiving the diagnoses was validating, pointing out the patients were not “insane” • Narcolepsy negatively affects relationships, but the social support is necessary