Meaning-making in chronic disease: A qualitative study of how adults with epilepsy create a meaningful concept of illness

This narrative study proposed to identify structures and concepts of meaning that constitute the elements of an evolving identity in the context of living a life disrupted by epilepsy, a chronic illness with sometimes devastating psychosocial sequelae. Temporal Lobe Epilepsy (TLE) or any temporal lobe and limbic system involvement in epilepsy can cause significant alterations in consciousness; the seizure experience may cover the spectrum from total blackout to mystical experience. Using a one-on-one semi-structured interview of up to two hours in length, six adults who met criteria intended to represent mainstream Americans living with epilepsy told their stories of diagnosis and of living with epilepsy over time. Narrative analysis was used to identify meaning concepts found throughout interview transcripts; from the constellation of these a further level of analysis identified structures of meaning. Each participant demonstrated one essential meaning-making structure that persisted over time; two participants appeared to share the same structure. Qualities of identity were not linked to specific structures of meaning-making, but were an impetus in processes of transformation within meaning-making structures. Unique variables in the experience of epilepsy are seizure content and control. Age of onset and degree of seizure control can impact the content of the meaning-making process. The findings may generalize to others with chronic illness and suggest the utility of employing meaning-making structures in a therapeutic context to help with stress reduction and possibly the reduction of seizures, especially for those individuals capable of self-observation. This last possibility holds implications for spiritual transformation in the experience of epilepsy and points to the process of integration of mind, body, and spirit that is at the heart of transpersonal psychology. Further research might test the clinical utility of these preliminary findings, explore whether a finite number of meaning-making structures exist, develop a more distinct picture of each one, and seek to identify processes of transformation specific to each structure.