Using photo-elicitation interviews to explore the experiences of social media influencers with visible differences: “I didn’t mean to become a voice for our whole community”

Some individuals with visible differences (conditions or injuries that affect one's appearance), have become social media influencers, using their platforms to share experiences, challenge stereotypes, and promote representation of appearance diversity. However, no research has explored their experiences and how they navigate this evolving role. Therefore, semi-structured photo-elicitation interviews were carried out with fourteen adult influencers (aged 18-45) with a range of visible differences to understand their experiences. Social media posts from their own accounts were used to facilitate the discussion. The sample included nine cisgender women, one trans woman, and four cisgender men. All participants used Instagram, 11 used TikTok, nine Facebook, and three YouTube, with follower counts ranging from 4300 to 300,000. Data were analysed using reflexive thematic analysis within a critical realist/contextualist framework. Three themes were generated: (1) 'You've got to create your own seat at the table', (2) 'Feeling an endless pressure to influence', and (3) 'There is no handbook for this job'. Social media provided opportunities to increase visibility of visible differences, foster connection, and influence public perceptions. However, participants described continuous pressure to produce content, remain visible, and support their communities while protecting their own wellbeing. As influencing is a new and evolving role, they often balanced authenticity, social responsibility, and financial sustainability without formal guidance. Influencers with visible differences play an important role in representation and advocacy of appearance diversity but face unique challenges. Findings underscore the need for clearer guidance, regulation, and support to promote safe, sustainable, and socially responsible influencing.