[Paper Review] Self-Expression and Sharing around Chronic Illness on TikTok

Rachael Zehrung, Yunan Chen|PubMed|Nov 20, 2023

Impact of Technology on Adolescents13 references4 citations

TL;DR

This study investigates how adolescents and young adults with chronic illnesses use TikTok for self-expression and peer support, analyzing 160 user-generated videos. Findings reveal that users share experiences to combat stigma and loss of normalcy, leveraging TikTok’s multimodal, content-driven format to raise awareness and normalize chronic illness, offering design insights for future health-focused online communities.

ABSTRACT

While prior work has investigated the benefits of online health communities and general-purpose social media used for health-related purposes, little work examines the use of TikTok, an emerging social media platform with a substantial user base. The platform's multimodal capabilities foster creative self-expression, while the content-driven network allows users to reach new audiences beyond their personal connections. To investigate users' challenges and motivations, we analyzed 160 TikTok videos that center on users' firsthand experiences living with chronic illness. We found that users struggled with a loss of normalcy and stigmatization in daily life. To contend with these challenges, they publicly shared their experiences to raise awareness, seek support from peers, and normalize chronic illness experiences. Based on our findings, we discuss the modalities of TikTok that facilitate self-expression around stigmatized topics and provide implications for the design of online health communities that better support adolescents and young adults.

Motivation & Objective

• To understand how adolescents and young adults use TikTok to express experiences with chronic illness.
• To examine motivations behind sharing personal health stories on a platform known for creativity and virality.
• To identify challenges such as stigma and loss of normalcy in daily life among users with chronic conditions.
• To explore how TikTok’s multimodal and content-driven features enable self-expression around stigmatized health topics.
• To inform the design of future online health communities that better support young adults with chronic illness.

Proposed method

• The study analyzed 160 TikTok videos centered on first-hand experiences of chronic illness.
• Qualitative content analysis was used to identify recurring themes in user narratives and expressions.
• The researchers examined video formats, use of multimedia (e.g., text, audio, visuals), and narrative structures.
• Thematic analysis focused on user motivations, challenges, and strategies for managing stigma and identity.
• The study drew on insights from human-computer interaction and digital health to interpret platform affordances.
• Findings were contextualized within broader literature on online health communities and social media use.

Experimental results

Research questions

• RQ1 How do young adults with chronic illnesses use TikTok to express their experiences?
• RQ2 What challenges do users face in daily life related to their chronic illness, and how do they address them through content creation?
• RQ3 What motivates users to share their health journeys on TikTok despite potential stigma?
• RQ4 How do TikTok’s multimodal and algorithm-driven features support self-expression around stigmatized health topics?
• RQ5 What design implications can be drawn for future online health communities targeting adolescents and young adults?

Key findings

• Users reported feeling a significant loss of normalcy due to chronic illness, which influenced their decision to share online.
• Stigmatization in daily life was a major challenge, prompting users to seek validation and understanding through public sharing.
• Users leveraged TikTok’s creative tools—such as music, text overlays, and transitions—to craft emotionally resonant narratives.
• The content-driven algorithm enabled users to reach audiences beyond their personal networks, increasing visibility and impact.
• Sharing served multiple purposes: raising awareness, seeking peer support, and normalizing chronic illness experiences.
• TikTok’s multimodal affordances were instrumental in helping users express complex emotions and identities related to illness.