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

Article information

Abstract

Introduction

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.

Conceptual Framework

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.

Self-Presentation Theory

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.

Communication Privacy Management (CPM) theory

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.

Platform affordance Theory

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:

Materials and Methods

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.

Data Analysis

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.

Results

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.

Table 1

The participant’s category according to type of disease, gender and activity on Instagram

Theme 1. Motivational Factors

Raising awarness without need for complete disclosure

A key theme identified in the interviews was the potentiality for raising awareness on Instagram. The participants noted that creating public pages allows them to expand their networks without the need to introduce themselves as rare disease patients, which encourages open discussion about their conditions.

“I created a page to advocate for people with rare diseases. I haven’t introduced myself directly as part of the rare disease community, but I share my disease-related experiences and talk about the challenges we face. I also share info to help raise awareness about these diseases” (p4 Nf, female).

They highlighted that Instagram serves as both visual and text-based platform, enabling them to choose how to communicate about their diseases. Moreover, the interactive features of Instagram, such as comments, direct messages, and stories empower them to share their stories without the pressure of complete disclosure.

“I don’t post pictures of my visible symptoms. Instead, I like to share useful info about the disease and join in on conversations by commenting on forums or other patients’ posts. I think this helps me stay connected with the patient community and keeps me motivated to keep pushing forward” (p5 Ich, male).

The anonymity provided by the platform facilitates self-disclosure (Rains, 2014) and creates an opportunity to address the lack of awareness, which is a significant contributor to stigma (Plackowski & Bogart, 2023). This option enables individuals to present aspects of their identity that are less stigmatized, thereby allowing them to remain engaged in their social lives.

The possibility of expanding social bonds

Participants noted that Instagram’s features enabled them to conceal visible signs of their conditions when desired. Although they recognized these challenges as part of their identity, many reported that interacting online felt easier than navigating the interpersonal complexities of face-to-face encounters.

“[in F2F communication] my signs and symptoms often communicate to others before I even begin the conversation. There have been many times when I preferred to remain silent in situations where I needed to speak" (p4 Nf, female).

These patients frequently encounter rejection or are perceived as unusual in their offline interactions, and many view their condition as a major barrier to social integration. In contrast, online platforms facilitate their participation in social communities and the development of supportive networks. Through these spaces, they can express themselves more freely, discuss broader social issues, and share their challenges with others.

“I have found many virtual friends with whom I can share so much. This makes me feel better because I don’t need to talk about my disease, and they don’t ask me about the visible signs on my face” (P 8 Ich, male).

Among all participants, approximately 43, including those who preferred to conceal their condition, reported that Instagram enabled them to expand their social bonds and connect with others who share similar experiences. This finding aligns with Bogart et al. (2024), who argue that autonomous disclosure benefits individuals with facial differences by allowing them to selectively disclose within in-group communities while concealing information from broader audiences, thereby maintaining their virtual relationships

Selective disclosure underpins both of these motivational factors. Participants strategically manage their self-presentation by revealing socially acceptable aspects of their identities while concealing features associated with stigma. In the context of raising awareness, they actively contribute to public education about rare diseases without exposing their stigmatized characteristics. This approach allows them to advocate for their community while maintaining privacy and emotional safety. Similarly, in fostering social bonds, participants use Instagram as a space to form virtual friendships and interact with others who share similar experiences. The platform’s affordances enable them to bypass the barriers often posed by visible symptoms in face-to-face interactions. Even individuals who chose to conceal their conditions reported benefiting from online communities, which provided emotional support and strengthened their sense of belonging.

Facilitating online disclosure through social acceptance

Alopecia patients reported feeling more comfortable with concealing or disclosing their condition among all participants, due to the evolving societal norms and attitudes around baldness in the social interactions, lessening stigma among these patients.

“My Instagram profile pic is just me with a bald head and a black background, and I really love it” (P3Al, male).

“Baldness has become a trendy fashion style these days and many men intentionally shave their head. Meanwhile, this disease is mainly characterized by hair loss, and does not pose any significant health risk” (P8 Al, male).

Concealment is easier for them, in particular women, because they typically use cosmetic products that effectively mask these symptoms. This ease of concealment has contributed to an increased sense of confidence, allowing them to feel more socially acceptable in various contexts.

“I’ve tattooed my eyebrows and wear wigs to hide my baldness when I go to university. I feel like no one knows about my condition, so I don’t talk about it with my online followers either” (P9 Al, female).

The majority of female participants expressed a preference for maintaining a conservative approach in their online interactions, choosing not to disclose the signs of their condition. However, those affected by alopecia reported feeling confident to present a typical representation of themselves on Instagram, as they experienced greater control over their symptoms. Regarding male patients with alopecia, this may stem from masculine norms that encourage them to downplay concerns about their appearance (Zucchelli et al, 2024). This theme highlights how patients lived experiences significantly influence their motivation for online interactions.

Additionally, due to its relatively higher prevalence compared to other rare diseases, alopecia is more widely recognized as a medical condition (Creadore et al., 2021), which mitigates stigmatization. Patients with alopecia noted that they are often mistaken for cancer patients because hair loss is a common side effect of chemotherapy. The lower degree of stigmatization associated with cancer—driven by higher public awareness and prevalence—contributes to a more accepting societal attitude. Consequently, individuals with alopecia report experiencing less stigma than those with NF or Ich (El Hachem et al., 2024; Aghaei et al., 2024; Fournier et al., 2023), as they are generally not perceived as unusual or socially deviant.

“Many people assume that I am suffering from cancer when they see me with a bald head” (P2 Al, male).

In contrast, Nf and Ich diseases are unknown for many, and it is almost impossible for them to conceal or lessen the severity of symptoms. These patients with visible symptoms, such as tumors and skin blemishes, often struggle to disclose their health conditions because they believe that many people particularly in diverse online world are unfamiliar with these diseases and they may face unpredictable reactions.

“Many people assume my illness is contagious, and I struggle to explain that it isn’t. Honestly, I’m just really tired of having to share my experiences on Instagram to educate others. I get that Instagram is a powerful tool for raising awareness, but I prefer not to share my problem with online audiences” (P1 Ich, female).

These three themes collectively highlight how patients’ engagement on Instagram is shaped by the interplay of disease typology, platform affordances, and socio-cultural contexts (Table-2). The nature and visibility of each condition significantly influence patients’ strategies of self-presentation and disclosure.

Table 2

Motivational Factors Influencing Self-Disclosure Practices on Instagram

Overall, these findings suggest that patterns of online self-disclosure among RDDs are not uniform but are mediated by disease visibility, perceived stigma, and societal attitudes. The affordances of Instagram enable both partial concealment and strategic disclosure, allowing users to negotiate recognition, advocacy, and social connectedness. Consequently, the interaction between technological, psychological, and cultural factors determines how and to what extent patients engage in digital self-presentation and communication.

Theme 2. Obstacles

Receiving Health misinformation

Individuals affected by RDs often experience delayed diagnosis and encounter substantial misinformation due to the low prevalence and limited medical knowledge surrounding their conditions. These diagnostic delays prolong the search for appropriate treatments. The lack of expertise—even among clinicians—creates fertile ground for misinformation, particularly from traditional and alternative medicine practitioners who promote unverified herbal remedies on SMPs (Ng et al., 2023). Participants in this study reported actively seeking health information and disease-related updates online; however, they expressed concern about the uncontrolled spread of unproven treatments. Several participants noted that after disclosing their condition on Instagram, they received numerous unsolicited messages from various accounts advertising such remedies.

For instance, p7 Ich (female) noted: “I receive many posts every day about treating ichthyosis with traditional medicines. My disease is a genetic disorder, but they try to convince me their treatments can eradicate this disease”. This highlights the vulnerability of patients who, after enduring prolonged diagnostic journeys, may be particularly susceptible to misleading information. She actively shares her experiences as an ichthyosis patient on a public Instagram page. She noted that her use of hashtags and awareness-raising posts has made her a frequent target of accounts promoting unverified treatments. Self-disclosure is not always intentionally, even those who followed disease-related pages and liked or commented on them also reported receiving advertising posts or misinformation regarding their diseases. P1 Al (female): “I don’t disclose my disease on Instagram, but after I commented on a page about alopecia, I received several advertisements for hair transplants that claimed to guarantee results for alopecia patients. This is highly misleading, as hair transplant is not a viable option for individuals with alopecia.”

In this regard, Finnegan et al. (2024) highlighted the prevalence of online misinformation about alopecia, which may lead to harmful therapeutic outcomes. These concerns may be exacerbated by algorithm-driven recommendations that expose individuals to misinformation following self-disclosure, particularly affecting those in early stages of diagnosis and treatment.

The visibility of symptoms associated with RDDs, coupled with the stigma surrounding incurable conditions, often leads patients to place trust in misleading sources of information. Participant P3 Nf (male) articulated this experience, stating: “Although I knew my disease is a genetic disorder, I hoped at least the signs on my face could be removed by using these treatments. He further elaborated on the challenges faced when disclosing his health conditions: “When we disclose our diseases, many people feel compelled to recommend various treatments due to the complexity of our conditions, which are often ineffective and lead to more confusion.”

Iranian SMPs creates an especially fertile environment for health-related misinformation beyond the inherent challenges posed by the rarity and complexity of rare diseases (Table-3). Major national health events, notably the COVID-19 pandemic, have exposed deep gaps in public and medical literacy that unregulated SMPs exploit. During crises, rumors about herbal remedies and dangerous cures have circulated widely, at times with dire consequences such as widespread methanol poisoning linked to false online claims. Crucially, unlike many countries with established medical advertising laws and enforcement mechanisms, Iran lacks systematic legal oversight and clear avenues for prosecuting those who promote unverified health information. This regulatory vacuum has left patient communities, especially those with rare and poorly understood conditions, exceptionally vulnerable to unchecked misinformation and predatory practices online.

Table 3

Obstacles to Online Self-Disclosure Among Rare Disease Patients

Experiencing incivility and impoliteness in online communication

RD community often experiences rejection and misjudgment from childhood. Thus, the majority of the participants reported that the fear of rejection and facing impolite behavior deterred them from disclosing their condition on Instagram.

P3 Nf(female): “I was always afraid of going to school because no one wanted to sit next to me. They thought my disease was contagious. These experiences still make me hesitant to disclose my disease even in my online interactions”.

The relative anonymity and diversity provided by Instagram, embolden some users to leave hurtful comments without concerns about the repercussions on the mental health of patients.

“Unfortunately, I have received insulting and impolite comments many times after sharing my experience on Instagram. I receive numerous supportive comments as well, but the number of users who post derogatory comments is still significant. It feels like their hurtful words have a bigger impact.” He further expressed: “I think Instagram has become a breeding ground for rude, impassionate, and hurtful behaviors. The anonymity and lack of face-to-face interaction on these platforms can diminish empathy and encourage impolite behaviors” (P8 Nf, male).

“I’ll never forget the first time I shared a picture of my hand showing signs of the disease. I received numerous comments, some of which were extremely insulting. they compared my skin to that of a crocodile. It would be a lie to say it didn’t affect me. Receiving such comments undoubtedly has psychological impacts. I realized I need to pay more attention to the long-term side effects of these reactions.” P7 Ich(female)

Research on impoliteness in Iranian SMPs demonstrates that culturally shared beliefs, social values, and moral assumptions strongly shape patterns of online hostility (Parvaresh & Tayebi, 2018; Parvaresh, 2019). Within Goffman’s (2009) framework of spoiled identity, these insults function as acts of symbolic degradation that undermine an individual’s moral standing through visceral and dehumanizing comparisons. For people with ichthyosis—whose skin has a visibly rough texture—such comparisons draw on entrenched aesthetic norms that reinforce social boundaries and intensify stigma. As a result, many individuals adopt avoidance of self-disclosure as a deliberate strategy to manage their discreditable identity and reduce exposure to stigmatizing interactions.

Long-term consequences of online disclosure on the patients and their families’ lives

The experience of stigmatization led patients to consider online self-disclosure as a significant concern, potentially impacting various aspects of themselves and their families’ real lives. This theme emerges from two sub-themes. Marriage and job opportunities. They described online self-disclosure a threat not only for themselves but also for their families.

(P6 Ich, female), described her reasons for concealment: “My sisters are of marriageable age, and revealing my disease could hinder their chances of finding a suitable partner”. This situation is more common in traditional cultures where family ties and social connections are strong. She said, “Once, after resharing a post from the ichthyosis association, I met my cousin a month later. I discovered that she was curious to know more about my disease and brought it up indirectly. However, I chose not to explain further, as it would stigmatize my entire family.”

Some participants reported that RDs are genetically inherited and run through other generations; therefore, revealing the disease stigmatizes all family members socially. They tended to manage their stigma by attributing the symptoms to accidents, burns or common diseases.

Some participants who revealed their disease openly on Instagram decided to restrict their activity after marriage.

“I think I should concentrate on my life in this stage of life and should be more careful about my activities because stigmatization would affect my marital life. You know, my wife is not part of the RD community, my activities and negative feedbacks I receive could affect her life as well” (P6 Nf, male).

Family concerns are intensified by the wide-spread practice of consanguineous marriages in Iranian culture, which constitute between 30% and 47% of marriages in some regions (Neshan et al., 2024). Although this practice is associated scientifically with a higher incidence of inherited genetic disorders, it also reflects the socio-cultural pattern whereby most marriage opportunities arise within extended family or familiar social networks. Patients often fear that disclosing their condition online could adversely affect the marriage prospects of their siblings or relatives— concerns that are heightened by the cultural focus on arranged or socially negotiated marriages. This socio-cultural context creates a complex challenge for patients, who must carefully balance personal disclosure with protecting family honor and ensuring future social integration. For participants, online disclosure was not merely an individual decision but one embedded within a shared family privacy system, an effort to prevent boundary turbulence that could threaten established family privacy rules.

Some participants also voiced concerns that disclosing their medical condition might negatively impact their job prospects.

“I am a hairdresser, if I reveal my disease to my clients, they may not come back to my barber shop; thus, I would never disclose it. When some of them ask me about the tiny tumors on my hand I tell them that they are moles and will be removed easily. I am deeply upset that many people are not aware of this disease but personally I cannot tackle this problem, so I don’t disclose on Instagram, however, joining the disease related pages has been really useful for me in terms of making friendship with other patients” (P5 Nf, male).

Research on invisible stigmas indicates that voluntary self-disclosure on online platforms is generally more advantageous than having stigmatized traits revealed involuntarily to employers (Kwon et al., 2024). Nevertheless, employees who carry stigmas often struggle to balance professional self-presentation with authentic self-disclosure in digital interactions (Lauriano & Coacci, 2023). These challenges are particularly acute in occupations that involve continuous client interaction. In the Iranian context, for example, service providers in hygiene and cosmetics industries rely heavily on customer perceptions of both the workplace environment and the service provider, who often serves as a visible element of marketing. Consequently, employees must carefully navigate online self-presentation to maintain professional credibility while managing the risks associated with disclosure of stigmatized attributes.

In the context of SMPs potential, many participants were satisfied with the role of Instagram in raising awareness. However, a respondent like P3 Ich who owns a jewelry shop, does not feel comfortable sharing disease related content on his business page.

He remarked: “I am open about disclosing my disease, but in my business page in which I sell jewelry I don’t reveal because I think it would negatively influence my sales”.

Lack of knowledge about inherited RDs intensifies clients’ concerns regarding the contagion of these conditions. This, combined with Iranian consumer behavior, differentiates the resulting stigma from general workplace discrimination. In Iranian society, visible physical differences, especially those interpreted as signs of illness, are often associated with notions of impurity and contamination. This cultural framework significantly influences consumer trust, particularly in personal care contexts such as hairdressing, where physical proximity and hygiene are paramount. Consequently, clients may avoid services from visibly affected individuals due to fears, whether rational or not, of contagion, which adversely impacts the professional livelihoods of those with stigmatizing conditions. This adds a culturally specific dimension to employment discrimination, where self-disclosure risks economic marginalization beyond typical workplace biases. Therefore, understanding these culturally embedded perceptions is essential to addressing the social and occupational challenges faced by Iranian patients with RDs.

Conclusion

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.

Limitations and Strengths

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.

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