Evaluating the Disease-Related Experiences of TikTok Users With Lupus Erythematosus: Qualitative and Content Analysis
July 2023
Studysummary This study used TikTok videos to explore experiences of individuals with lupus erythematosus, revealing that mucocutaneous symptoms significantly impact mental health and body image, while pharmacologic treatments are often viewed negatively, leading to important implications for clinical interactions and validation.
Our plain-language summary. Not medical advice or a treatment recommendation. Consult a qualified healthcare professional before changing treatment. Full disclaimer
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.
