Life after being diagnosed with psychogenic non-epileptic seizures (PNES): A South African perspective

•Medical professionals occupy key roles both as a challenge and resource.•Patients describe the psychological diagnosis as a major challenge because it is not considered a “real” disorder.•When positive social support is available, it can be a tremendous resource to those with PNES.•Patients with PNES report facing similar limitations as persons with epilepsy (i.e. driving, unexpected seizures, etc.).

PurposeThe aim of the study was to explore the life experiences of South Africans who have been diagnosed as having PNES, with a focus on the aspects of the challenges which these individuals face, as well as the resources and coping strategies which are either made available to them or used by them in order to cope with PNES.MethodsTen semi-structured interviews were analysed by means of thematic analysis in order to explore themes around challenges and resources for those diagnosed with PNES.ResultsVarious challenges were revealed by participants, as well as the resources used in order to deal with these challenges associated with being diagnosed with PNES. Some of the challenges included unexpected seizures, medical professionals, belief systems as well as family. However, resources to counteract these challenges were social support, medical professional as well as religion and spirituality.ConclusionAlthough many challenges are encountered by those who are diagnosed with PNES, there are substantial resources from which these individuals draw in order to live fulfilling and satisfactory lives. As more information and research is accumulated, more resources may become available to benefit these individuals and allow them to recover from PNES. It should be noted that medical professionals were described as both a challenge as well as a resource for people with PNES. Therefore, we can conclude that these individuals are key in the experiences of those who have been diagnosed with PNES, and that they play a role on not only a diagnostic level, but also in providing support, information, as well as therapeutic benefits.