Navigatng health stgma: self-disclosure of rare dermatological disease on Instagram

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dc.contributor.authorKarimi, Shokoufe
dc.contributor.authorOjagh, Zahra
dc.contributor.organizationDepartment of Communication of Science and Technology, Faculty of Cultural Studies and Communication, Institute for Humanities and Cultural Studies, Iran
dc.date.accessioned2026-01-09T16:31:49Z
dc.date.available2026-01-09T16:31:49Z
dc.date.issued2025
dc.date.submitted2026-01-07T19:40:43Zen
dc.description.abstractThis 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—Neurofibromatosis, Alopecia, and Ichthyosis—this research examines how affected individuals navigate their social presence and communication on Instagram. A qualitative design 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 interrelated 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, expanding social connections, and seeking social acceptance. Obstacles encompassed exposure to online health misinformation, experiences of incivility, and fears of social rejection, all of which profoundly influenced participants’ personal and family dynamics. The findings reveal that RDDs’ disclosure practices are shaped by a complex interplay of disease typology, socio-cultural context, and platform affordances. Participants actively constructed flexible privacy boundaries to manage disclosure and mitigate privacy 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. Policymakers and healthcare organizations are encouraged to leverage social media platforms to promote health literacy and reduce stigma.en
dc.identifier.citationKarimi, S., Ojagh, Z. (2025). Navigating health stigma: self-disclosure of rare dermatological disease on Instagram. Health & New Media Research, 9(2):38-53. Published online December 18, 2025 DOI: https://doi.org/10.22720/hnmr.2025.00213
dc.identifier.doi10.22720/hnmr.2025.00213
dc.identifier.issn2951-2522
dc.identifier.urihttps://open.icm.edu.pl/handle/123456789/26384
dc.language.isoen
dc.publisherHealth & New Media Research Institute
dc.relation.ispartofseries9; 2
dc.rightsUznanie autorstwa 4.0 Międzynarodoween
dc.rights.urihttp://creativecommons.org/licenses/by/4.0/
dc.sourceHealth & New Media Research
dc.subjectstigmaen
dc.subjectrare diseasesen
dc.subjectsocial mediaen
dc.subjectself-disclosureen
dc.titleNavigatng health stgma: self-disclosure of rare dermatological disease on Instagramen
dc.typearticle
dc.type.versionpublishedVersion
person.identifier.orcidKarimi, Shokoufe [0009-0001-3841-9304]
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