Written Accounts of Living With Epilepsy or Psychogenic Nonepileptic Seizures: A Thematic Comparison

Qual Health Res. 2018 May;28(6):950-962. doi: 10.1177/1049732317748897. Epub 2018 Jan 1.


This study examines the subjective experience of living with epilepsy or psychogenic nonepileptic seizures (PNES) by thematically comparing individuals' written accounts of their condition. Five key differences emerged. Theme 1: "Seizure onset" revealed differences in how individuals think about and ruminate over the possible causes of their condition. Theme 2: "Emotive tone" demonstrated that writings of those with epilepsy reflected stable emotions (no intense emotional reactions), whereas those of writers with PNES reflected anxiety and low mood. Theme 3: "Seizure symptoms" showed differences in the conceptualization of seizures. Theme 4: "Treatment" explored differences in the diagnostic journey and experiences of health care professionals. Theme 5: "Daily life" revealed that those with epilepsy perceived sequelae and seizures as something that must be fought, whereas those with PNES tended to describe their seizures as a place they enter and something that has destroyed their lives. The findings have implications for treatment and management.

Keywords: United Kingdom; dissociative seizures; epilepsy; membership-led organizations; nonepileptic attack disorder; phenomenology; psychogenic nonepileptic seizures; qualitative; subjective experience; thematic; thematic comparison.

MeSH terms

  • Adult
  • Affect
  • Aged
  • Anxiety / psychology
  • Emotions
  • Epilepsy / pathology
  • Epilepsy / psychology*
  • Female
  • Humans
  • Male
  • Middle Aged
  • Psychophysiologic Disorders / psychology*
  • Quality of Life
  • Seizures / pathology
  • Seizures / psychology*
  • Socioeconomic Factors