Abstracts

Rationale: Epilepsy is a particularly disruptive illness as individuals experience increased vulnerability and loss of control due to unpredictable seizures. These events leave the individuals struggling to make sense of their experience in order to regain control of their lives. Metaphor is used to convey how people make sense of a phenomenon such as illness, and this tool can be particularly useful in conceptualizing and communicating one s experience. Understanding the way in which People with Epilepsy (PWE) conceptualize their chronic illness is key to addressing psychosocial health and coping strategies. The current study sought an understanding of epilepsy metaphors as a novel strategy to address the psychosocial needs of PWE. Methods: A qualitative analysis of published epilepsy narratives (autobiographies and biographies) was conducted. Ten narratives were reviewed, four were written by family members and six by PWE. All accounts were analyzed to identify central metaphors used to describe the experience of epilepsy as a whole, as well as metaphors describing specific aspects of the experience. Results: Analysis revealed that metaphors play a central role in facilitating one s ability to communicate the experience of epilepsy. While all narratives had been published in the past 10 years, half recounted epilepsy diagnosis and treatment that occurred over 30 years ago. Improved understanding of epilepsy has been accompanied by changes in societal metaphor use, from the earliest references of demonic possession to current concepts of treatable electrical disturbances. Nonetheless, two accounts made reference to epilepsy as possession by evil forces. Most sources identified attempts to find a diagnosis as a quest. Individuals referred to medical treatment for epilepsy as being held captive and zombie-like. The most recent accounts identified treatment as freedom or the self being under control. The majority of accounts suggested that PWE feel stigmatized by a permanent stain, bruise, or other divergence from the perceived norm. The ten accounts analyzed reflected a common narrative structure based on the course of medical treatment, as well as the use of metaphors prevalent in societal discourse on epilepsy. Conclusions: The current study provides insight into narratives and metaphors that PWE use to make sense of their illness. The observed trends emphasize the central role that both medicalized and socialized concepts play in shaping the individuals' concepts of epilepsy. This research is part of a larger project that seeks to identify medical and cultural epilepsy metaphors that contribute to perceived stigma, in contrast to those perceived to promote psychosocial health. Future research is hoped to improve communication between PWE and healthcare professionals, ultimately supporting patients' psychosocial adjustment to their condition.