Epilepsy Online Social Support Characterizing Topics and Challenges Shared in the r/Epilepsy Community

Jul 16, 2026

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Epilepsy Online Social Support characterizes what people living with epilepsy (PLWE) discuss and the concerns they surface in Reddit’s r/Epilepsy community. Using 23,944 subreddit posts, researchers apply topic modeling, thematic analysis, and psycho-linguistic methods to extract major discussion patterns. Five overarching themes emerge: symptoms and triggers, treatment and healthcare experiences, daily functions, seizure activity, and peer support. Findings summarize community social-support needs and inform design implications for technology-supported self-management.

LanguageEnglish

CategoryResearch & Report

FormatPDF

Pages45

Reading Time1 h 53 min

Introduction

Background

Epilepsy Health Condition and Self-Management

Methods and Analysis

Topic Modeling and Thematic Analysis

Psycho-linguistic Analysis

arXiv :2607 .09523v1 [ cs .CY] 10 Jul 2026 Epilepsy Online Social Support: Characterizing Topics and Challenges Shared in the r/Epilepsy Community JESSICA Y. MEDINA, Drexel University, USA JORDYN YOUNG, University of Michigan, USA AEHONG MIN, University of California, Irvine, USA PATRICK C. SHIH, Indiana University, USA WENDY R. MILLER, Indiana University, USAAFSANEH RAZI, Drexel University, USA Epilepsy is one of the most common neurological conditions, and people living with epilepsy (PLWE) often use social media as aresource. However, a comprehensive understanding of the topics represented in epilepsy-specific communities where PLWE may be more honest is essential to designing better technologies to address epilepsy self-management. To understand the main topics and concerns of PLWE, we collected 23,944 r/Epilepsy subreddit posts and performed topic modeling, thematic, and psycho-linguistic analyses. We found five major themes for those topics: symptoms and triggers (e.g., mental health and memory, sleep/nocturnal, and photosensitivity), treatment and healthcare experience (e.g., medication, understanding epilepsy), daily functions ( e.g., perceived level of independence and finances), seizure activity (e.g., auras and ictal symptoms), and support for PLWE (assisting PLWE and support for PLWE). We highlight the top psycho-linguistic characteristics of posts across different topics. Our contributions include providing an understanding of the challenges of an online epilepsy community and their social support needs, and implications for designing technologies. Additional Key Words and Phrases: epilepsy, seizures, online communities, human-centered computing 1 Introduction Epilepsy is a common neurological condition affecting more than 1% of the global population and approximately 3.4 million people in the United States [15, 135]. Beyond seizure and medication management, people living with epilepsy (PLWE) often experience stigma, emotional and mental health challenges, and reduced quality of life [29, 84, 87] . Social media platforms have become important spaces where people with chronic illnesses seek informational and emotional support [94, 109]. These platforms provide large-scale, diverse datasets that can reveal health-related concerns and experiences not easily captured through traditional methods such as surveys or interviews [99] . Prior work has explored online support-seeking behaviors for mental health, chronic and stigmatized conditions [6, 17, 40, 101, 105] . Existing epilepsy-related social media studies have largely relied on keyword searches or smaller condition-specific communities [33, 42, 80] . While valuable, these approaches may overlook broader lived experiences and discussions that do not explicitly reference epilepsy. In contrast, Reddit’s r/Epilepsy community contains over 59,000 members, offering a large and diverse space for PLWE to discuss their experiences online. To better understand these discussions, we addressed the following research questions: RQ1: What are the main topics and challenges discussed in a popular online epilepsy-focused community? RQ2: What are the top psycho-linguistic characteristics of the topics discussed in the posts? Authors’ Contact Information: Jessica Y. Medina, [jym29@drexel.edu](jym29@drexel.edu), Drexel University, Philadelphia, Pennsylvania, USA; Jordyn Young, jordyny@umich. edu, University of Michigan, Ann Arbor, Michigan, USA; Aehong Min, aehongm@uci.edu, University of California, Irvine, Irvine, California, USA; Patrick C. Shih, [patshih@iu.edu](patshih@iu.edu), Indiana University, Bloomington, Indiana, USA; Wendy R. Miller, [wrtruebl@iu.edu](wrtruebl@iu.edu), Indiana University, Bloomington, Indiana, USA; Afsaneh Razi, [ar3882@drexel.edu](ar3882@drexel.edu), Drexel University, Philadelphia, Pennsylvania, USA. 2 Jessica Y. Medina, Jordyn Young, Aehong Min, Patrick C. Shih, Wendy R. Miller, and Afsaneh Razi We analyzed 23,944 posts from

FAQs

What data and methods are used to study the r/Epilepsy community?

The study collects 23,944 posts from r/Epilepsy and uses Latent Dirichlet Allocation topic modeling, thematic analysis, and LIWC-based psycho-linguistic analysis.

What are the five major themes identified in the epilepsy community discussions?

The five themes are symptoms and triggers, treatment and healthcare experience, daily functions, seizure activity, and support for PLWE.

Why does the paper emphasize psycho-linguistic characteristics across topics?

It highlights how language features differ by topic, helping explain distinct concerns and support needs, and enabling better technology design for self-management and peer support.

Jul 16, 2026

Upload by Aurelia