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

Lupus erythematosus (LE) is an autoimmune condition that is associated with significant detriments to quality of life and daily functioning. TikTok, a popular social networking platform for sharing short videos, provides a unique opportunity to understand experiences with LE within a nonclinical sample, a population that is understudied in LE research. This is the first qualitative study that explores LE experiences using the TikTok platform.

This study aims to evaluate the disease-related experiences of TikTok users with LE using qualitative and content analysis.

TikTok videos were included if the hashtags included #lupus, were downloadable, were in English, and involved the personal experience of an individual with LE. A codebook was developed using a standardized inductive approach of iterative coding until saturation was reached. NVivo (Lumivero), a qualitative analysis software platform, was used to code videos and perform content analysis. Inductive thematic analysis was used to derive themes from the data.

A total of 153 TikTok videos met the inclusion criteria. The most common codes were experiences with symptoms (106/153, 69.3%), mucocutaneous symptoms (61/153, 39.9%), and experiences with treatment (59/153, 38.6%). Experiences with symptoms and mucocutaneous symptoms had the greatest cumulative views (25,381,074 and 14,879,109 views, respectively). Five thematic conclusions were derived from the data: (1) mucocutaneous symptoms had profound effects on the mental health and body image of TikTok users with LE; (2) TikTok users' negative experiences with health care workers were often derived from diagnostic delays and perceptions of "medical gaslighting"; (3) TikTok users tended to portray pharmacologic and nonpharmacologic interventions, such as diet and naturopathic remedies, positively, whereas pharmacologic treatments were portrayed negatively or referred to as "chemotherapy"; (4) LE symptoms, particularly musculoskeletal symptoms and fatigue, interfered with users' daily functioning; and (5) although TikTok users frequently had strong support systems, feelings of isolation were often attributed to battling an "invisible illness."

This study demonstrates that social media can provide important, clinically relevant information for health practitioners caring for patients with chronic conditions such as LE. As mucocutaneous symptoms were the predominant drivers of distress in our sample, the treatment of hair loss and rash is vital in this population. However, pharmacologic therapies were often depicted negatively, reinforcing the significance of discussions on the safety and effectiveness of these treatments. In addition, while TikTok users demonstrated robust support systems, feelings of having an "invisible illness" and "medical gaslighting" dominated negative interactions with others. This underscores the importance of providing validation in clinical interactions.