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

    April 2024 in “ JMIR infodemiology ”
    Lindsey J Wanberg, David R. Pearson
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    TLDR TikTok videos show that people with Lupus often discuss symptoms and their significant impact on mental health, face diagnostic delays, have mixed views on treatments, and feel isolated despite support.
    The study analyzed 153 TikTok videos from users with Lupus Erythematosus (LE) to understand their disease-related experiences. The videos, which had hashtags related to lupus, were in English, and shared personal experiences, were coded using NVivo software. The analysis revealed that symptoms, particularly mucocutaneous symptoms, were frequently discussed and viewed, with 69.3% of videos mentioning symptoms and 39.9% discussing mucocutaneous symptoms. Five key themes emerged: the significant impact of mucocutaneous symptoms on mental health and body image; negative experiences with healthcare workers due to diagnostic delays and perceived medical gaslighting; positive portrayals of nonpharmacologic interventions and negative views on pharmacologic treatments; the interference of symptoms with daily life; and feelings of isolation despite strong support systems due to the "invisible illness" nature of LE. The study concluded that social media is a valuable resource for clinicians to understand patient experiences, highlighting the need for effective treatment of hair loss and rash, better communication about treatment safety and effectiveness, and the importance of validation in clinical interactions.
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