Experiences of people with epilepsy in their professional development and daily working life: An exploratory study

•Half of surveyed people with epilepsy (PWE) worried about their professional future.•Half of the PWE perceived reduced work performance due to adverse drug reactions.•After diagnosis before finishing school, 1/3 could not chose the desired profession.•Of those diagnosed in professional training, almost 1/3 had to quit their training.•Of those already at work, 13% had to give up their job after the diagnosis. The primary objective of this exploratory study was to examine the current situation of people with epilepsy (PWE) in the German labor market and how epilepsy affects their daily working life. From June 2023 to March 2024, we conducted an exploratory online survey in adult PWE in Germany. The online survey was completed by 193 PWE (median age: 40.5 years; Q25/75: 27/53; 62 % female). The participants reported the following effects of their diagnosis on their professional lives: Experiencing reduced work performance due to perceived adverse drug reactions (102/193; 53 %), worrying often about the professional future (93/193; 48 %), and perceiving every-day work or school life to be more challenging because of the diagnosis (90/193; 47 %). Of the 81 participants who were diagnosed before finishing school, 26/81 (32 %) could not pursue their initial career aspirations after receiving their diagnosis. Of the PWE who were diagnosed during their vocational or academic training, 3/35 (9 %) had to specialize differently in their field of training, and 10/35 (29 %) were forced to stop their training. 10/77 (13 %) PWE who were diagnosed during their professional life could not keep their job following the diagnosis. According to self-reports, one of the main challenges faced by adult PWE is the deterioration of work performance due to perceived adverse drug reactions. They also perceived a major mental strain regarding their professional future because of the diagnosis. Moreover, they felt considerably limited in their career choices, especially if they were diagnosed early in life.