Epilepsy is a condition where pathology, diverse manifestations and attached social understandings contribute to an emotional experience unlike many other chronic conditions. The emotional dimension to epilepsy has been little considered in existing research.
Objectives: To explore the emotional experience of young people with epilepsy.
Methods: A qualitative study involving in-depth interviews with 37 young people diagnosed with epilepsy.
Results: Fear emerged as the key emotion and this largely related to the experience, or anticipated experience, of seizure activity. Three key features of fear and epilepsy emerged through the analysis; harm, temporality and action. The fear experienced was not only external, relating to immediate injury, but also internal in terms of potential damage to the brain. The embodied nature of epilepsy can, therefore, present a threat to conceptions of the self. Underlying this internal dimension of fear is an understanding of the brain as central to the sense of self.
Conclusions: The experience of epilepsy does not only involve fear of physical harm but also fear of a loss of self. We conclude that there are broader (alternative) readings of the experience of epilepsy that are often overlooked.
