“I just want to be normal”: How epilepsy reshapes identity, belonging and everyday life
This study explored how children and adolescents with medically resistant (intractable) epilepsy experience their everyday lives, based on their own words rather than parent or clinician reports.
The researchers found that epilepsy affects all areas of life, including physical energy, emotions, friendships and learning. But the most striking finding was not just the impact itself, it was how young people understood that impact in relation to normalcy and identity.
Across the interviews, children consistently described seizures as the main barrier to feeling “normal”. They compared themselves to their peers and felt set apart in ways that shaped how they saw themselves.
In this study, “normalcy” is not defined medically. It reflects how children measure themselves against everyday expectations, such as keeping up at school, having friendships, and participating in activities. When epilepsy disrupts these, children begin to see themselves as different.
The impact was evident across multiple areas. Many children described constant fatigue, emotional distress linked to the unpredictability of seizures, social isolation, and disrupted or fragmented learning. These experiences often overlapped and reinforced each other.
Socially, even children with friendships described a deeper sense of separation or not belonging. Some reported bullying or exclusion, while others limited their own participation due to fear or lack of confidence.
Cognitively, many children experienced memory problems, attention difficulties, and interruptions to learning caused by seizures or recovery periods. This led some to feel “stupid” or unable to keep up, directly affecting their sense of self-worth.
Importantly, these experiences occur during childhood and adolescence, when identity is still forming. The study shows that epilepsy can become embedded in how a young person understands who they are, not just what they have.
Together, the findings show that for children with complex epilepsy, the impact goes beyond seizures. It shapes identity, belonging and the ability to feel like a “normal” child, at a time when fitting in matters deeply.
Study recommendations:
“Findings provide direction for assessment and evidence for developing or enhancing clinical interventions and community/school-based programs that might mitigate some of these negative experiences.”
Read the full article: https://www.epilepsybehavior.com/article/S1525-5050(05)00262-3/fulltext