Kebire Eylül ARSLAN, İrem Fatma ULUDAĞ
Archives of Epilepsy - 2026;32(3):110-114
Objective: Although advances in diagnosis and treatment have improved seizure control in epilepsy, the psychosocial burden of the condition remains substantial. Stigma, social misconceptions, and perceived barriers in education, employment, and interpersonal relationships continue to shape the lived experience of people with epilepsy. Understanding these challenges in contemporary clinical populations is essential for informing patient-centered care and public awareness strategies. To investigate the social, educational, occupational, and relational experiences of adults with epilepsy, with particular emphasis on perceived stigma and societal attitudes. Methods: In this cross-sectional study conducted at a tertiary epilepsy clinic, 90 adult patients (mean age 36.8+/-12.0 years) completed a structured questionnaire consisting of Likert-type items and open-ended questions exploring experiences related to education, employment, social relationships, and stigma. Clinical data, including epilepsy type, seizure frequency, and treatment characteristics, were obtained from medical records. Responses were analyzed descriptively, and open-ended questions were thematically categorized. Results: Participants reported a range of psychosocial challenges, including perceived negative reactions from others, concerns regarding relationships and family life, and difficulties in educational and occupational settings. A notable proportion of patients reported difficulties related to societal attitudes (38.8%). Open-ended responses indicated that difficulty in socializing (26.7%), fear of seizures (20%), and challenges in finding employment (15.6%) were among the most frequently reported concerns. Misconceptions in the community included beliefs that people with epilepsy may be dangerous to others (37.7%) or may be less productive at work (11.1%). Conclusion: Despite advances in clinical management, epilepsy remains associated with substantial psychosocial burden and perceived stigma. These findings highlight the need for ongoing efforts to address public misconceptions, support patients in social and professional domains, and integrate psychosocial considerations into routine epilepsy care.
