The ubiquity and accessibility of social media platforms (SMP)s have redefined how individuals communicate, share information, and perceive their social identities in the context of health promotion. These platforms have emerged as pivotal tools that transcend geographical constraints and enhance health awareness and behaviours, allowing for broader reach and engagement with diverse populations (Ghalavand, Panahi, & Sedghi, 2020). This is especially crucial for patients who suffer from rare diseases (RD), due to their low prevalence and geographical dispersion. It is estimated that approximately 400 million people worldwide are affected by more than 7000 RDs (Nguengang Wakap et al., 2020). RD is a medical condition characterized by a distinct pattern of signs and symptoms, affecting no more than 1 in 2000 individuals (International Rare Diseases Research Consortium, 2022). SMPs are considered as a communication hub to bridge the gaps in knowledge and awareness for these patients (Yabumoto et al., 2022). Previous studies have examined their role in the accessibility of health and social care information, educational content, and the ability to connect with others with similar experiences (Ashtari & Taylor, 2023; Barton, Wingerson, Barzilay, & Tabor, 2019; El Hussein et al., 2020; Lasker, Sogolow, & Sharim, 2005). However, they didn’t concentrate on self-disclosure among RDs and the related factors in health promotion.

This is while, evidence from studies on chronic diseases, including cancer, suggests that self-disclosure plays a meaningful role in enhancing patients’ quality of life (Yao et al., 2024). Among breast cancer patients, research by Liu et al., (2024) has indicated a positive correlation between self-disclosure and social support.

A new study by Pluta & Siuda (2024) undermined the traditional understanding of online self-disclosure, indicating that patients use SMPs for both negative and positive self-disclosure, However, their primary motivation appears to be informing and alerting others rather than seeking social support. These studies highlight the importance of self-disclosure in promoting health. Hence, the trend of investigations suggests that even the role of new technologies offered by AI, such as chatbot, in aiding patient’s self-disclosure is being considered (Chung & Kang, 2023). Also, for the sustainable evolution of the online health community, it is necessary for participants to disclose their health and privacy (Wang, Zhang, & Liao, 2021). More importantly, the self-disclosure attends as a catalyst for self-reflection into one’s development. Johnson (2021) considers it as a public health intervention.

Self-disclosure for RDs is crucial because they often face discrimination and devaluation from public due to stigma that is a key issue in their daily life (Pearce & Baynam, 2024). According to Goffman (2009) diseases and disabilities serve as forms of stigma that act as face mediators, playing a significant role in the construction of public identity. Goffman elucidates how individuals who are stigmatized often employ various strategies to conceal the visible signs and symptoms associated with their conditions during face-to-face interactions. In contrast, virtual communication offers individuals greater autonomy and control over their interactions that is not always possible in direct social encounters. However, self-disclosure on SMPs also involves certain risks and challenges. In the process of self-disclosure, individuals decide how to present themselves on the social stage; yet, at the same time, they expose themselves to others, which may invite evaluation and judgment. According to Petronio (2002), individuals establish specific rules on this stage that define and regulate the boundaries of their private sphere. Disclosure of health stigma on SMPs despite risks and challenges has been proved to be beneficial for destigmatization, social supports and building strong networks (Andalibi, 2019). Moreover, these platforms can influence health policies by implementing anti-stigma initiatives, such as Twitter storms and targeted hashtags, providing a way to protest against the stigmatization of individuals (Betton et al., 2015). To date, the phenomenon of stigma as a health issue has been examined in the context of SMPs, especially concerning prevalent diseases like mental health disorders (Mueen, 2023). HIV, Covid19 (Portnoy, 2020) or some well-being related problems like pregnancy loss (Andalibi & Forte, 2018) and obesity (Clark et al., 2021), while patients living with RD are understudied.

This study aims to explore the factors that influence online self-disclosure among patients stigmatized by visible symptoms— rare dermatological diseases (RDD). Specifically, as the cultural nuances also affect self-disclosure decisions (Davies, 2016), this study seeks to identify these factors in the context of Iranian culture. We selected three types of RDDs with visible symptoms including alopecia, neuro fibromatosis and ichthyosis, which can significantly contribute to the stigma experienced by patients within the RD community.

This study draws on three interconnected theories: Self-Presentation Theory (Goffman, 1959), Communication Privacy Management (CPM) Theory (Petronio, 2002), and Platform Affordances (Treem & Leonardi, 2013). These frameworks collectively reveal how individuals affected by RDDs manage self-disclosure, control impressions, and regulate privacy on Instagram.

Living with a RD often entails both perceived and enacted stigma (Baynam, Gomez, & Jain, 2024). Such stigma profoundly shapes how individuals construct their online identities, negotiate visibility, and regulate the disclosure of personal information. Drawing on Goffman’s (1959) dramaturgical approach, social life can be understood as a form of performance in which individuals act as “presenters” of self, strategically managing impressions to influence others’ perceptions. In digital environments, these performances unfold on highly visible stages, where audiences are multiple, unpredictable, and persistent. Extending Goffman’s framework, Hogan (2010) conceptualizes online identity as a curated exhibition, emphasizing how users selectively share, edit, and archive content to produce an idealized representation of self. Within this context, for individuals with RDDs, self-disclosure is not merely an act of personal expression but also a strategic performance of stigma management, balancing authenticity with social acceptability.

Goffman (1963) further explains that individuals with discreditable identities, whose stigmatized conditions can be concealed, must continuously negotiate whether, when, and to whom they reveal this information. In contrast, individuals with discredited identities have stigmatizing attributes that are already visible or known to others, which limits their ability to control information and instead requires them to manage the social consequences that arise from this visibility. The central concern for individuals with discreditable identity is social acceptance from non-stigmatized audiences; thus, disclosure decisions are deeply relational and shaped by social reactions. According to Goffman, the revelation of stigma can elicit two general responses from others: acceptance or hostility. In response to this uncertainty, stigmatized individuals adopt various stigma management strategies, including passing, covering, selective disclosure, and retreating.

On SMPs like Instagram, these strategies manifest as digital performances. Patients often carefully curate their posts to highlight empowerment, treatment progress, or everyday normalcy, representing “front-stage” presentations aimed at eliciting positive reactions and reducing stigma. Meanwhile, more vulnerable or emotionally sensitive expressions are typically reserved for “back-stage” settings, such as private accounts, direct messages, or closed support groups. However, experiences of discrimination, ridicule, or harassment online can undermine individuals’ ability to present themselves openly, resulting in increased self-censorship or withdrawal from public visibility. In this sense, Goffman’s dramaturgical lens illuminates how self-disclosure among people with RDDs is a dynamic, context-dependent process of identity negotiation, where the desire for authenticity and connection continually intersects with the fear of social exclusion.

While Goffman’s dramaturgical lens explains the performative dimension of self-disclosure by showing how individuals with stigmatized conditions manage impressions and navigate social acceptance in public settings, Petronio’s Communication Privacy Management (CPM) theory (2020) complements this perspective by conceptualizing self-disclosure as the management of private information through boundary regulation. Whereas Goffman focuses on the presentation of self in social interaction, CPM emphasizes the ownership and control of personal information. According to Petronio, individuals view their private information as a form of intellectual and emotional property, over which they exercise regulatory control by constructing and negotiating privacy boundaries.

For individuals with RDDs, this boundary management becomes particularly complex in digital environments such as Instagram, where audiences are often vast, invisible, and heterogeneous. Each act of posting or commenting involves a calculated negotiation of disclosure boundaries including decisions about what aspects of the illness to reveal, how much detail to include, and with whom to share it. These decisions are guided by privacy rules, which are shaped by two types of criteria: core (or durable) criteria and catalyst (or emergent) criteria (Petronio et al., 2013). Core criteria are relatively stable and include enduring factors such as cultural expectations, gendered assumptions, and personality traits, which influence individuals’ general comfort with disclosure. In contrast, catalyst criteria are situational and event-driven, including motivations, emotional states, relational context, and perceived cost-benefit calculations. These emergent factors can alter privacy boundaries dynamically, especially when new social or emotional conditions arise.

At the same time, the interactive and networked nature of digital platforms makes these privacy boundaries particularly fragile. Once information is shared, it can easily spread beyond the intended audience, leading to what Petronio terms boundary turbulence—moments when established privacy rules are violated or disrupted. Boundary turbulence may compel individuals to recalibrate their disclosure strategies, either through self-censorship, selective sharing, or migration to more private digital spaces. By integrating Goffman and Petronio, self-disclosure can thus be conceptualized as both a performance and a negotiation. Patients not only stage their identities to manage impressions but also actively regulate the flow of intimate information to preserve autonomy, dignity, and emotional safety. This synthesis underscores that disclosure on SPMs is rarely spontaneous; rather, it is a strategically managed process, balancing the competing needs for visibility, authenticity, and privacy within a sociotechnical environment that both amplifies and threatens control.

Digital platform design plays a crucial role in shaping user perceptions, adoption, and engagement, as emphasized by motivational and technology-affordance theories (Evans et al., 2017; Sundar, 2008). Norman (2013) defines affordances as action possibilities that objects or environments offer users. In digital environments, these affordances extend beyond technical features to include psychological and social dimensions, influencing how individuals communicate, interact, and construct meaning.

Treem and Leonardi (2013) identify four core social media affordances including: visibility, persistence, editability, and association that influence how users perform identity and manage privacy within networks. Building on their work, recent studies point to additional affordances such as network association, social presence, and anonymity, which further shape online expression and self-disclosure (Oz, Shahin, & Greeves, 2024). Together, these affordances position SMPs as vital spaces for public dialogue and collective meaning-making, enhancing connection opportunities while also increasing risks of exposure

Social media affordances are therefore widely recognized as facilitating interactivity (Jenkins, 2006), participation, and self-expression. They transform users from passive receivers into active content creators, encouraging personal storytelling and identity performance. However, these digital spaces are not neutral communication arenas. As DeVito et al. (2017) argue, perception of self-presentation affordance of SMPs is driven by individual personality traits and individual experiences. Factors such as stigma and social norms may influence users’ willingness to disclose personal experiences or opinions publicly. Consequently, even as SMPs provide the infrastructure for open dialogue, they remain environments where visibility and silence coexist in tension.

Instagram’s affordances thus function as both enablers and constraints: they empower users to express and connect while simultaneously exposing them to intensified visibility and potential boundary violations. For individuals with RDDs, this image-based platform operates as a double-edged communicative environment, where the pursuit of authenticity, belonging, and advocacy is continually negotiated against the risks of stigma, misinterpretation, and loss of privacy. Consequently, platform-affordance theory is indispensable to this study because it bridges the structural properties of Instagram with users’ subjective experiences of stigma, risk, and self-presentation. By articulating the interplay between technological affordances and disclosure behavior, this framework provides the conceptual tools needed to answer the research questions concerning how and why individuals with RDDs manage visibility, privacy, and identity on social media.

Taken together, these three frameworks offer a multidimensional lens for understanding RDDs’ online performances. Self-Presentation Theory explains why users strategically manage impressions; CPM explains how they regulate private information; and Platform Affordance Theory explains the conditions under which these strategies become possible or constrained.

This theoretical synthesis further highlights the tensions users face between visibility and safety, authenticity and acceptability, and openness and protection when disclosing sensitive aspects of their identities. Grounded in this integrated framework, the present study investigates how individuals with RDDs navigate these challenges on Instagram by addressing four key questions:

This study employs a qualitative methodology to explore the factors influencing self-disclosure decisions among patients stigmatized by RDDs. This approach is particularly effective in healthcare system, amplifying the voices of marginalized communities affected by health disparities (Michelen et al., 2024). Its strength lies in its capacity to generate in-depth understanding of complex health experiences (Renjith et al., 2021). In the context of RD community, given the disparity and rarity of these diseases, this method can provide profound insights into patients’ experiences.

Although the exact number of patients affected by RDs in Iran is not readily available, the Rare Disease Foundation of Iran has registered approximately 6,000 individuals living with RDs, encompassing around 400 distinct types (Rare Diseases Foundation of Iran, 2024). Among these, we selected three specific types of RDDs: alopecia, neurofibromatosis, and ichthyosis. Alopecia is an autoimmune disease, characterized by immune system’s attack on hair follicles, leading to hair loss. Neurofibromatosis consists of a group of genetic disorders marked by the formation of typically non-cancerous tumors in the spinal cord, nervous system and skin. The tumors in these disorders are usually benign and the symptoms tend to occur on the skin in the form of brown spots and tiny tumors. Ichthyosis is a group of hereditary skin disorders resulting in dry, scaly, rough and red skin (Supreme Council of the Rare Diseases Foundation of Iran, 2019).

A purposeful criterion sampling strategy was employed to select participants who met the specific inclusion criterion of being patients diagnosed with these RDDs and maintaining an active Instagram account.

The first author’s seven-year experience working at the Rare Diseases Foundation of Iran, combined with her background in media studies, served as the primary inspiration for illuminating the mediated self-presentation of this marginalized community.

Her established strong relationships with the chairpersons of the RD forum boards, cultivated through years of advocacy work, proved instrumental in facilitating participant recruitment. We provided a formal statement outlining the research purpose and inviting members to participate in interviews. The chairpersons then disseminated this information via their social media accounts, leveraging their credibility and the recognized support of the Rare Disease Foundation of Iran. This trustworthiness significantly contributed to an unexpectedly high number of participants volunteering for the study, exceeding our initial expectations. The first author’s positionality as both a researcher and a patient advocate positioned her as the primary interviewer responsible for conducting interviews with the participants. This dual role created a dynamic interplay of trust, access and responsibility.

Because the study design included three distinct disease types, it was necessary to capture both shared and disease-specific experiences. Given these variations, a larger sample was required to reach data saturation (Wutich, Beresford, & Bernard, 2024). Each condition presented unique visible symptoms and differing levels of stigmatization, which shaped patients’ experiences and their self-disclosure decisions. Consequently, a higher sample size was essential to adequately represent these diverse perspectives and achieve saturation.

A total of 54 Patients aging from 18 to 45 (mean age: 27) were selected with an equitable distribution amongst genders to ensure the collection of balanced data. The semi-structured interview method was adopted to collect primary data from the participants.

Considering the sensitive nature of the population, an online consent form was distributed explaining the interview design, emphasizing participants’ right to withdraw at any point, and assuring confidentiality and anonymity. Given the geographically dispersed and hard-to-reach nature of the rare disease patient population, face-to-face interviews were not feasible. Interviews were conducted through direct voice and text messaging on Instagram and WhatsApp. It is pertinent to note that the participants chose this different method at their convenience. Despite the limitations of this method in observing of non-verbal cues and real-time probing, it was considered appropriate due to the sensitivity of the topic and the stigma associated with these conditions. Using private and familiar online environments helped minimize potential stress or embarrassment when discussing disease-related experiences. To mitigate these methodological limitations, interviews were scheduled at times most suitable for participants to promote comfort and spontaneity in their responses. Additionally, follow-up and prompt questions were incorporated throughout the interviews to enhance depth and compensate for the reduced availability of non-verbal cues.

This approach aligns with ethical guidelines for qualitative research with vulnerable populations by prioritizing participant comfort, autonomy, and confidentiality while adapting data collection methods to practical constraints and participants’ emotional needs.

The interviews were conducted between May and August 2023. The interviews were centered on participants’ self-disclosure experiences on Instagram. They further explored Instagram’s role and affordances, participants’ perceptions of others’ reactions in both online and offline settings, and the implications of self-disclosure within family life. Follow-up questions and prompts were used throughout to elicit richer and more detailed narratives. Although their experiences varied according to the nature of their disease and the type of stigma they encountered, data saturation was ultimately reached when no new themes, insights, or patterns emerged from the subsequent interviews.

To identify themes related to disclosure management among patients, thematic analysis was applied (Braun & Clarke, 2006). To design the codebook, the transcripts were uploaded to MAXQDA software (version 2022) to assist in the organization and identification of themes. The first author, conducted an inductive analysis of 54 transcribed interviews by repeatedly reading the transcripts to ensure a thorough understanding of the data. To mitigate potential bias arising from the first author’s background, the second author—an associate professor specializing in health communication and qualitative analysis—initially coded 10% of the transcripts to assess the reliability of emerging codes. This initial coding phase involved six interviews (two per disease), from which 114 preliminary codes were derived. Inter-coder agreement was calculated using SPSS, yielding a high concordance rate of 89%. Subsequently, double coding was extended to an additional nine interviews by the second author. Given the evident consistency in coding, further reliability assessments were deemed unnecessary. The second author maintained overall responsibility for data analysis, cross-checking the final themes, and fully contributing to their interpretation. To further minimize bias, both coders employed an iterative and systematic analytic approach characterized by constant comparison, memo-writing, and regular peer debriefings. After refining codes and sub-codes, the final themes and sub-themes were collaboratively developed and consensually agreed upon by both authors.

The primary analysis of patients’ privacy management revealed that women exhibited a stronger preference for maintaining their Instagram profiles as private, indicating a general tendency among female participants to adopt privacy-conscious behaviors (table-1). However, further examination demonstrated that account privacy status alone did not reliably correspond to actual privacy management practices. Specifically, some participants with private accounts engaged in self-disclosure, sharing disease related information with followers comprised of family and friends. Conversely, several participants with public accounts refrained from self-disclosure altogether. Overall, female participants were less inclined to engage in self-disclosure compared to their counterparts.

This study examined how individuals with RDDs engage in self-disclosure on Instagram. Two central themes were identified: motivations and obstacles. The findings indicate that RDDs’ disclosure practices are shaped by a complex interplay between disease typology, socio-cultural context, and platform affordances. Instagram’s interactive nature enabled the construction of a dynamic privacy boundary, allowing participants to engage in awareness-raising activities, share information about their conditions, and expand their social networks without necessarily being stigmatized for their visible symptoms. Conversely, this same interactivity created spaces for incivility, impoliteness, and the dissemination of health-related misinformation.

The extent to which platform affordances contribute to self-disclosure and de-stigmatization is highly context-dependent and closely tied to prevailing socio-cultural norms surrounding these patients. Self-disclosure, in this context, carries enduring social implications that extend beyond the individual, influencing family reputation, marriage prospects, and intergenerational perceptions of stigma. Theoretically, this study extends Goffman’s concept of the spoiled identity and the theory of privacy turbulence by demonstrating how online self-disclosure within Iranian society generates offline privacy challenges for the broader family unit. It advances the understanding of online self-disclosure by situating it within a cultural framework where individuals with stigmatized conditions must negotiate visibility to preserve familial and professional credibility.

From a practical standpoint, the study highlights the need for supportive infrastructures that promote public awareness, health literacy, and culturally sensitive communication regarding RDs. Such frameworks should guide both affected individuals and the general public toward more informed, empathetic, and respectful online interactions.

Future research should employ broader and more diverse sampling across geographic, gender, and socioeconomic dimensions to capture the varied experiences of stigma within the RD community. Moreover, further investigation is warranted into how healthcare institutions and policymakers can leverage SMPs to foster the dissemination of accurate information and mitigate stigma through targeted health education initiatives.

This study has several limitations that warrant careful consideration. First, although there are approximately 6,000 types of rare diseases, each with distinct symptoms, lived experiences, and stigma dynamics, the present findings cannot be generalized across this heterogeneous population. Further research is needed to explore the social— and specifically the mediated—experiences of other RD groups across diverse platforms.

Second, the study focused exclusively on Instagram. While this image-based platform is particularly popular in Iran and widely used by RD communities—most RD organizations maintain active Instagram pages—this single-platform focus limits the analytical scope. Other platforms, such as Twitter (X), offer rich comparative opportunities, particularly for examining cross-national conversations and differences in stigma management among RD communities in Iran and beyond.

Finally, the positionality of the first author represents both a strength and a limitation. Her professional background as a public relations specialist with seven years of experience in an RD advocacy NGO facilitated participant recruitment and provided valuable contextual insight into the social realities of this marginalized community. At the same time, this proximity may have influenced interview dynamics and data interpretation. The first author was aware of these potential influences and sought to maintain transparency throughout the research process. To further mitigate the risk of bias, the second author—an associate professor with expertise in qualitative analysis— closely supervised the analytic procedures, offering independent oversight and contributing to a more balanced interpretation of the data.