Introduction
Epilepsy is one of the most common chronic neurological disorders and, beyond its physical consequences, it also affects the psychological, social, and cultural dimensions of patients’ lives. Although the condition is medically manageable, many patients endure suffering that goes beyond the disease itself, due to social stigma, fear of judgment, discrimination, and restrictions in marriage, education, employment, and social relationships. The historical and cultural legacy of epilepsy-long associated with fear, superstition, and social exclusion-continues to shape negative public attitudes toward individuals living with epilepsy. In Yazd, given its religious and traditional social context, epilepsy may be perceived as a taboo, pushing patients toward silence, denial, or concealment. Accordingly, the study adopts a sociological qualitative approach to explore the lived experience of patients with epilepsy in Yazd, the individual and social consequences of the illness, and their coping strategies.
Methodology
The study adopted a qualitative grounded theory approach to develop a theoretical model of the lived experience of people with epilepsy in Yazd. Data were gathered through in-depth, semi-structured interviews. Using purposive and theoretical sampling, participants were recruited from health centers and clinics across several districts of Yazd - including Azadshahr, Kasnavieh, Sheikhdad, Eskan, Hakimzadeh, and Qaleh - and, when appropriate, from nearby community settings. sampling continued until theoretical saturation, yielding 14 interviews. Data were analyzed through open, axial, and selective coding to derive concepts, categories, and the core category. Credibility was strengthened through member checking, constant comparison, and peer review. Ethical considerations included informed consent, confidentiality, pseudonyms, and the right to withdraw at any time.
Findings
The findings indicate that the experience of patients with epilepsy in Yazd can be understood under the core category of “Suspended Lifeworld.” This refers to a condition in which patients are neither completely excluded from society nor fully accepted within it; rather, they live on a boundary between “normality” and “social exclusion.” On the one hand, they appear to participate in everyday life like others; on the other hand, due to the stigma attached to the illness, fear of seizures, social judgment, and institutional restrictions, they are constantly faced with a sense of insecurity, suspension, and instability.
Based on the data analysis, the reproduction of a crisis of meaning and mental confinement - or internalized stigma - were identified as the causal conditions shaping this experience. In explaining their illness, patients resorted to interpretations such as psychological pressure, physical trauma, family history, the evil eye, or supernatural forces. In the absence of a clear medical and social understanding, the illness becomes a source of confusion and existential anxiety for them. Moreover, society’s negative attitudes and the attribution of epilepsy to spirit possession, pretense, or personal weakness are gradually internalized by patients, intensifying feelings of shame, embarrassment, and fear of disclosure.
At the contextual level, two categories became prominent: a high-risk lifeworld and the erosion of family’s emotional order. Sudden seizures turn the patient’s body into an unreliable source of threat, reducing self-confidence, sense of security, and social participation. Within the family, the illness also produces anxiety, tension, feelings of guilt, disruption of family roles, and erosion of emotional support. Alongside these factors, living on the margins and the structural trap of deprivation function as intervening conditions. In other words, patients entrapped in a cycle of social and economic deprivation due to educational decline, restrictions on driving, unstable employment, treatment costs, and weak insurance support.
The main consequences of this situation are reflected in two categories: psychological erosion and institutionalized discrimination. Patients experience anxiety, depression, constant fear of seizures, diminished self-esteem, and a sense of having no future. At the same time, they face restrictions and discrimination in areas such as education, employment, marriage, and social participation. In response to these conditions, patients adopt two main strategies: first, psychosocial adaptation and meaning-making through accepting the illness, regular medication use, turning to spirituality, traditional medicine, and efforts to maintain calm; and second, self-imposed confinement, whereby individuals limit their presence in gatherings and public situations in order to avoid judgment, ridicule, or social rejection.
Conclusion
The findings revealed that the experience of patients with epilepsy in Yazd is not merely a medical or physical experience; rather, it is shaped in relation to cultural meanings, social reactions, family relations, and institutional structures. The core category of the study, namely “Suspended Lifeworld,” represents a condition in which patients oscillate between acceptance and rejection, normality and stigmatization, and social participation and gradual exclusion.
In addition to enduring epileptic seizures, patients face a crisis of meaning, internalized stigma, psychological insecurity, erosion of family relationships, economic deprivation, educational and occupational limitations, and social discrimination. Therefore, patients’ suffering is not solely caused by the neurological disorder itself, but is also produced by social reactions, cultural misunderstanding, and the weakness of institutional support.
In response to these conditions, patients employ strategies such as accepting the illness, taking medication, turning to spirituality, relying on restricted family support, and, in some cases, withdrawing from social situations. Accordingly, reducing social stigma, promoting public education, strengthening psychosocial support, revising welfare and support policies, and providing equal opportunities in education, employment, marriage, and social participation are essential for improving the quality of life of patients.