Disclose or conceal? Strategies of information management in persons with epilepsy

Purpose: When handling information about their disease in their social contacts, persons with epilepsy try to avoid or limit stigmatization. We report two basic strategies of information management: general concealment and preventive disclosure. To test whether persons with epilepsy apply a strategy of preventive disclosure, we hypothesized that they would disclose their epilepsy when anticipating that their disease would make them conspicuous in social contacts and when believing that they would be able to forestall stigmatizing attribution processes through disclosure. Methods: One hundred nineteen outpatients at the Bethel Epilepsy Center, Bielefeld, Germany, aged 16-74 years responded to a questionnaire assessing willingness to disclose their epilepsy in various fictitious daily scenarios, the perceived risk that the interaction partner might find out about their epilepsy (risk of detection), as well as the anticipated positive and negative social consequences of disclosure in these social situations. Results: Willingness to disclose varied across the different scenarios, and only a few respondents rejected disclosure categorically. Willingness to disclose depended on the subjectively perceived risk of detection and the anticipated consequences of disclosure: Respondents were more willing to disclose their epilepsy the more they feared that their interaction partner would detect their disease or find out about it in another way and the more they anticipated that disclosure would enable them to exert a favorable impact on their partner's social judgment formation. Conclusions: Many persons with epilepsy appear to apply a strategy of preventive disclosure with which they strive to influence social judgment formation in their environment by purposefully disclosing their disease to forestall possible stigmatization processes.