Purpose: Qualitative studies examining lived experiences of psychogenic nonepileptic seizures (PNES) have predominantly relied on datasets collected using clinical or research interviews. This study pursued a different approach by investigating individuals' written accounts of their condition.
Methods: Participants (n=19) were recruited from membership-led organisations for individuals living with seizures and from a United Kingdom hospital. Participants were instructed to produce four pieces of writing: 1) about their thoughts and feelings about their condition; 2) a letter to their condition; 3) a letter to their younger self; and 4) about a personal value. All writings were analysed using thematic analysis.
Results: Six main-themes emerged from the data. Theme 1: 'living with PNES' demonstrated that all participants presented the condition as having a debilitating effect. Theme 2: 'Emotions' revealed that individuals were struggling with anxiety, low mood and self-worth. Theme 3: 'Seizure symptoms' showed variability was a prominent feature in the description of ictal events. Theme 4: 'Treatment and outcomes' demonstrated that individual's perception of diagnosis and therapy differed greatly. Theme 5: 'Causation and development' revealed that the majority of participants spontaneously reported experiencing a traumatic event in the past. Theme 6: 'Lack of understanding' by themselves, the public and healthcare professionals appeared to pose considerable challenges to participants.
Conclusions: Qualitative research has an important role to play for improving our understanding of PNES. The findings contribute to the literature by highlighting the nature of stigma that people with PNES experience, and also their proneness to demonstrate problems with self-worth.
Keywords: Dissociative seizures; Nonepileptic attack disorder; Psychogenic nonepileptic seizures; Qualitative; Stigma; Thematic.
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