Digital epidemiology: leveraging social media for insight into epilepsy and mental health

Social media platforms, particularly Reddit’s r/Epilepsy community, offer a unique perspective into the experiences of people with epilepsy (PWE) & their caregivers. This study analyzes 57k posts & 533k comments to uncover linguistic, emotional, and thematic patterns across demographics such as age, gender, and relationship to the PWE. We identify significant variation in language and discussion topics across these groups, as validated by statistical tests and topic modeling. Group-specific concerns emerged: teenagers frequently discuss marijuana and gaming-related triggers; women emphasize pregnancy and hormonal impacts; and caregivers, particularly parents and romantic partners, express a heightened emotional burden. We further examine the prevalence of depression signals across demographics, revealing that 39.75% of posts exhibit signs of severe depression, frequently co-occurring with anxiety and emotional distress. To quantify engagement within the community, we introduce a novel metric, F(P), which integrates post length, sentiment polarity, and readability. Posts expressing emotional or mental health concerns show significantly higher F(P) scores, underscoring the platform’s potential as a real-time support and outreach mechanism.