Self-Expression and Sharing around Chronic Illness on TikTok

Area of Science:

• Digital Health
• Social Media Studies
• Health Communication

Background:

• Prior research explored online health communities and general social media for health.
• Limited investigation exists on TikTok's role in health discourse, despite its large user base.
• TikTok's unique features enable creative expression and broad audience reach.

Purpose of the Study:

• To investigate the challenges and motivations of individuals sharing their chronic illness experiences on TikTok.
• To understand how TikTok's platform features influence health self-expression and community formation.

Main Methods:

• Content analysis of 160 TikTok videos featuring personal accounts of chronic illness.
• Qualitative examination of user-generated content focusing on lived experiences.

Main Results:

• Users reported struggles with loss of normalcy and stigmatization due to chronic illness.
• Sharing experiences on TikTok served to raise awareness, seek peer support, and normalize illness.
• TikTok's multimodal nature facilitates self-expression regarding stigmatized health conditions.

Conclusions:

• TikTok offers a unique space for individuals with chronic illness to express themselves and connect with others.
• Findings suggest implications for designing more effective online health communities, particularly for adolescents and young adults.
• Platform design can leverage multimodal features to support health-related self-disclosure and community building.