Evaluating the Disease-Related Experiences of TikTok Users With Lupus Erythematosus: Qualitative and Content Analysis

This study analyzed 153 TikTok videos from 76 users to understand the experiences of individuals with lupus erythematosus (LE). Key findings include the significant impact of mucocutaneous symptoms like hair loss and rash on mental health and body image, and the frequent portrayal of LE as an "invisible illness" leading to feelings of isolation. Users often reported negative interactions with healthcare workers, citing "medical gaslighting" and diagnostic delays. Nonpharmacologic treatments were viewed more positively than pharmacologic ones. The study highlights the importance of addressing mental health, educating support systems, and improving clinician-patient communication to enhance care for LE patients.