Overview
Epilepsy affects approximately 65 million individuals globally — 3 million in the United States alone. It is the fourth most common neurological disorder, costing nearly $10 billion annually in direct medical expenses in the U.S.
Despite affecting people across all demographic and socioeconomic groups, individuals with epilepsy often avoid discussing their condition. The fear of negative stereotypes, discrimination, and social exclusion leads many to conceal a diagnosis that shapes nearly every aspect of their daily life.
This study, conducted by Aarti S. Ivanic, PhD, investigated two central questions:
- Why do people with epilepsy choose to disclose — or withhold — their diagnosis?
- What are the psychological wellbeing impacts of that decision?
Disclosure Patterns
71% of respondents reported disclosing their epilepsy diagnosis to individuals beyond their immediate family, close friends, and medical team.
Why People Disclose
- Safety: Ensuring others nearby could recognize and assist during a seizure
- Practicality: Managing daily logistics that epilepsy affects (driving, work environments, social settings)
- Information: Helping others understand the condition and reduce their fear or confusion
Why People Don’t
- Privacy: A desire to keep medical information personal
- Fear of judgment: Concern about stigma, discrimination, or changed relationships
- Loss of control: A sense that disclosure means surrendering narrative control over how others perceive them
The Wellbeing Impact
The data revealed a meaningful relationship between disclosure and psychological wellbeing.
Those who disclosed reported feeling “more at ease and open with others” — a sense of authenticity and reduced cognitive burden from managing concealment.
Those who withheld their diagnosis experienced mixed outcomes: some felt greater control, but many experienced fear and sadness from isolation and the ongoing effort of hiding their condition.
Critically: 51% of respondents who reported receiving social support demonstrated notably elevated positive emotional wellbeing — the strongest predictor of psychological health in the study.
Conclusion
The research makes a clear case: stigma costs wellbeing. When people with epilepsy feel safe enough to disclose, and when they receive genuine social support in response, they fare meaningfully better.
The implications extend to policymakers, healthcare providers, employers, and the general public. Reducing the stigma of epilepsy is not just a social good — it is a public health imperative, with measurable impacts on the quality of life for millions of people worldwide.
