Experiences of university students disclosing epilepsy to peers: ‘It's a shared thing now’

Abstract

Introduction While disclosure of concealable conditions like epilepsy can create social support, it may cause relationships to disintegrate. Friendship in young adulthood is pivotal in the transition to emotional autonomy, yet little is known about peer disclosure by university students with epilepsy. This qualitative study aimed to map key features in the process of epilepsy disclosure. Method Semi-structured interviews were completed with eight young adults (aged 18–25 years) with epilepsy enrolled in or recently graduated from Irish universities. Findings Thematic analysis yielded four main themes: (1) Assessing the disclosure recipient; (2) Managing the presentation of epilepsy; (3) Forging alliances; and (4) Feeling more positive. The process of disclosure centred on enlisting the support of allies deemed trustworthy by participants. Disclosure messages presented epilepsy neutrally to bolster allies' commitment to the role. Although participants viewed disclosure as beneficial to wellbeing, concern was expressed about acquiring a stigmatised social identity. Conclusion Occupational therapists are well placed to support young adults through the process of disclosure. Promoting a positive collective identity through peer mentorship promises to disrupt stigma. More broadly, partnerships between occupational therapists and epilepsy organisations or disability support services in third level education could establish an academic culture where supports are readily available to people with concealable illnesses.