Navigating health stigma: self-disclosure of rare dermatological disease on Instagram

This study investigates the practice of online self-disclosure among individuals affected by rare dermatological diseases (RDDs). These conditions, often of genetic origin, are accompanied by visible symptoms that expose patients to social stigma and constrain their daily interactions. Focusing on three of the most prevalent RDDs in Iran—Neu- rofibromatosis, Alopecia, and Ichthyosis—this research examines how affected individ- uals navigate their social presence and communication on Instagram. A qualitative de- sign was adopted between 2023 and 2024 using purposive sampling to recruit 54 participants from the three disease groups. Data were collected through semi-structured interviews and analyzed thematically. The study is theoretically informed by three inter- related frameworks: self-presentation, communication privacy management (CPM), and platform affordances. Two overarching themes emerged from the analysis: motivational factors and obstacles to disclosure. Motivational factors included raising awareness, ex- panding social connections, and seeking social acceptance. Obstacles encompassed ex- posure to online health misinformation, experiences of incivility, and fears of social rejection, all of which profoundly influenced participants’ personal and family dynam- ics. The findings reveal that RDDs’ disclosure practices are shaped by a complex inter- play of disease typology, socio-cultural context, and platform affordances. Participants actively constructed flexible privacy boundaries to manage disclosure and mitigate pri- vacy turbulence for themselves and their families. The study underscores the need to enhance public understanding of RDDs and highlights the potential of sociocultural and digital interventions to improve the wellbeing of this marginalized community. Pol- icymakers and healthcare organizations are encouraged to leverage social media plat- forms to promote health literacy and reduce stigma.