Are we safe? Seeking information and knowledge sharing by individuals with hidden disabilities Bran Winkler​ Affiliation: University of Maryland, MLIS Program Abstract: This study explores how individuals with invisible disabilities seek, access, and utilize information across medical and online platforms. This article uses research and studies conducted that examined the life-world of people living with or who have lived with invisible disabilities to examine the motivations, barriers, and strategies that shape their information behavior. Data were analyzed to identify key patterns of information needs, value, and trust. Findings suggest that individuals prefer informal sources over formal sources and report to social media to seek new information rather than their General Practitioners. The study conducted should be beneficial to information and medical professionals to better understand the needs of those with invisible disabilities. However, future research should be conducted to better understand those who avoid or are unsure of how to seek out their information needs. Keywords: information-seeking, invisible disabilities, social media, patient education, social life 1.​ Introduction Disabilities are common. A disability can occur at any point in one’s life, and depending on the disability, it can begin to develop completely unbeknownst to the individual. Until recently, the perception and discourse surrounding disabilities were that of easily distinguishable disabilities: people with mobility issues, apparent sight issues, and cognitive issues. However, an individual may experience one or more symptoms that disrupt their daily life, which are not immediately apparent to those around them. These are referred to as invisible or hidden disabilities. According to the CDC (2024), a study from 2022 found that over 61 million U.S. adults, or about 20% of the population, suffer from or experience a disability in their lifetime. Despite this statistic, discussions surrounding disabilities and disabled individuals haven’t truly penetrated mainstream discourse and remain stigmatized today. This stigmatization and lack of discourse only enable and maintain a lapse in understanding what it means to be disabled. Beyond that, it can be difficult to define what being disabled or having a disability means because its meaning is dependent upon the individual, their illness, and their disparities. The World Health Organization (WHO) considers ‘disability’ to be an umbrella term, under which impairments, activity limitations, and other restrictions can fall (Abdelhamid, 2025). ​ 2 of 7 Further, the complexity of defining disabilities only grows more difficult when it comes to invisible disabilities because of the difficulty and time it takes to detect them. Navigating the world with an invisible disability is often isolating and stratified due to the primary focus of research and care being conducted for individuals with apparent disabilities (Hendry et al., 2022). Additionally, one of the more difficult aspects of having an invisible illness is the elusiveness of the illness itself. The effectiveness and efficiency of care from a patient's medical team is reflected by their financial and societal status. Patients who suffer from specific or rare disabilities cannot be treated by general practitioners, in which case they need to seek out specialists. The wait times to be accepted and receive care from specialists, if a patient can afford it, can take months if not longer. Depending on the severity of their illness, patients need to be treated sooner if they wish to achieve some quality of life. Even after waiting to see a specialist, there is no guarantee that they are capable of diagnosing or treating the illness. Yet, even when they can, the uncertainty that treatment will work is a pressure point for many individuals (Chen, 2012). The present study set out to examine the information needs and behaviors of those with invisible disabilities. Because disability is in fact an umbrella term, and there are various avenues regarding evidence of treatment, research, and approaches available to treat this community, it is imperative to understand the information-seeking patterns of this community and the ways their needs are met. More specifically, the focus is on understanding what factors motivate individuals with invisible disabilities to seek information and what types and sources of information they find useful. 2. Methods For this study, a systematic search was conducted that reviewed journal articles and research reporting on communities with invisible disabilities and their information-seeking behaviors. Boolean operators were utilized in the search process to aid in a precise search function that narrowed the number of obtained results. Using the terms “disabili* AND information-seeking” and “behavior” AND “disabili*” was found to be successful. Likewise was limiting the date range from 1994 to 2023. The researcher primarily used Google Scholar and the University of Maryland’s online library search interface to conduct research for this study. Additionally, the process of chainlinking was implemented and aided the researcher in discovering articles that would not have otherwise been found. During the eligibility process for determining articles, the main criteria needed to include multiple search or behavior functions, or have an analysis of the lifeworld of a community/individual with invisible disability. Further, considering that the aforementioned definition of invisible disability provides a range within which much can fall under, for this review, ​ 3 of 7 those with mental health disorders were not considered. The researcher found a framework in resources such as Hendry et al., St. Jean, and French-Lawyer et al., amongst others. 3. Findings Overall, the analysis of the articles found that many who currently or have previously suffered from an invisible disability predominantly seek their information through social media and the internet. According to Sweet et al. (2019), community is highly valued among individuals with invisible illnesses, as the stratified nature of these conditions often leads to a lack of community and comfort. Many have found community and comfort through internet resources and groups. It is difficult to assimilate into society when living with an invisible disability because individuals are presumed to be members of the majority group (Ysasi et al., 2018). Due to this, they are plagued by social pressures, physical barriers, and emotional stress. It should be noted that, in addition to these individuals living with chronic illnesses, they often live with feelings of shame, identity concerns, and feelings of inferiority. Assumptions that individuals without an apparent visible disability are able-bodied are deeply instilled within society. Meaning, those with invisible disabilities are more likely to face stigma and negative attitudes when they request aid or assistance (Ysasi et al., 2018). Having an invisible disability comes with the attached feeling of having to prove they are, in fact, disabled and/or ill. As a consequence of the stigma, barriers, and stress, information-seeking and behaviors are primarily focused on the internet and online means. While formal sources of information are still consulted (i.e., Doctors, textbooks, databases), informal sources are generally seen as more beneficial. Results show that General Practitioners (GPs) were the second most common source of information among disabled individuals; however, they were rated as one of the least-valued sources of information (Sweet et al., 2019). The reason for this is that formal sources provide disease-related information, meanwhile, informal sources tend to provide illness-related information. Formal sources tend to be perceived as less relevant and less personal to marginalized groups. According to Chatman (1996) and Dervin (2005), formal sources may be perceived to be less useful simply because of the stressful, anxiety-inducing context within which they tend to be consulted. According to a study conducted by St. Jean (2012), participants found illness-related sources more beneficial because these sources provided them with knowledge that aided in coping and feeling in control of their illness. Given the significance of control and security, this community has found online support groups to be an effective means of fostering support and shared understanding. As stated by Hasler et al. (2013), the anonymity afforded by the ​ 4 of 7 Internet, especially to those with stigmatized identities, has been critical to finding support and information. Anonymity is an important vehicle for this community due to the uncertainty and emotional risk involved in revealing a disability to others. Access to online groups offers inclusion, information sharing, and a space to openly discuss identity and disability without fear. Exploring these online spaces serves as a way to validate the invisible disability experience and share different forms of illness-related information. The recent progression of social media has also enabled those with invisible disabilities to use platforms such as X, Instagram, and TikTok to seek out adaptive, up-to-date information that is relevant to them socially, culturally, and economically (Sannon et al., 2023). These platforms enable discussions about disability education and awareness that are often absent from medical, institutional, and mainstream news spaces. That isn’t to say that formal and medical spaces aren’t sought out. However, the tendency to do so is primarily before their diagnosis. Pre-diagnosis, patients are more interested in learning about symptoms and the consequences of their disability. It is here that formal sources are most beneficial. Institutional and authoritative sources offer structured and verified information. It is after they’ve been officially diagnosed that individuals begin seeking out informal sources such as social media and support groups to achieve understanding and community. 4. Discussion This review sought to assess the information-seeking behavior of people with invisible disabilities. A vast majority of the articles selected highlighted the importance of internet groups and social media to express information needs. The pressures of social norms and barriers imposed upon those with hidden disabilities have caused many to report to these spaces rather than formal or traditional means. Articles that examined social media and support groups presented positive aspects of social media and internet information seeking, such as building knowledge, joining support groups, and seeking validation (Sweet et al., 2019). Findings from this research suggest that information professionals may struggle to access the information life-world of those with invisible disabilities. The need for self-protection and masking may prevent individuals from revealing their needs to professionals, even to those who are willing to help. However, it is beneficial for both information and medical professionals to have an understanding of the ways that people with invisible disabilities conduct information seeking. Establishing support features so professionals have the means to direct individuals to informal resources could be potentially beneficial in demonstrating trust and understanding. ​ 5 of 7 However, knowledge seeking in general is something that people with disabilities do not always conduct, and is not always feasible for those marginalized in society. Knowledge seeking should never be assumed, and not all individuals who suffer or have suffered from a disability are driven to do so. In this case, acquiring information is deeply tied to anxiety and the uncertainty of the disability. Through knowledge acquisition, many individuals can reduce their anxiety and establish a sense of certainty. It is important to acknowledge that there is an entire demographic of people with invisible disabilities who do not resort to this behavior. Very rarely is this demographic surveyed, and yet, sometimes, because of the barriers, stress, stigma, or a combination of sources, individuals will intentionally avoid information-seeking. Just as those who use support groups and connections through social media to cope with their disability, so do some practice information avoidance. The tendency to avoid information is recognized to be a reaction to the mental stress, fatigue, and lack of resources available to an individual (Case et al., 2005). Avoiding information given by medical professionals is done by individuals because paying attention to it will cause too much mental discomfort or dissonance. 5. Conclusion Many are still under the assumption that if a disability is not apparent, then an individual is able-bodied. These assumptions, along with other barriers and stigmas make existing in the physical world difficult for people with invisible disabilities. From this are feelings of confusion, identity crises, and anxiety that persist within this community. The findings from this research have highlighted the importance of social networking and informal resources for people who live or have lived with an invisible disability. Establishing trust and a sense of solidarity is found to be one if not the most valuable way to cope with the negative aspects of living with an invisible disability. Overall, the quality of the literature is well conducted, especially in how individuals seek out their needs through the use of social media and the internet. However, future research should attempt to reach the stratified individuals who do not participate in info-seeking. Understanding that some disabled individuals prefer to live in information avoidance and attempt to self-isolate should be a concern to researchers and medical professionals alike. With the research provided, information professionals should understand that they may not reach the disabled community, nor is it their job to. But if they can ensure equitable access to technology, particularly social media, it will allow individuals with disabilities to take advantage of these benefits, such as community-building, information sharing, and advocacy. ​ 6 of 7 References Abdelhamid, S. (2025). WHO EMRO - Disabilities. Who.int. https://www.emro.who.int/violence-injuries-disabilities/strategy/disabilities.html Ayers, S. L., & Kronenfeld, J. J. (2007). Chronic illness and health-seeking information on the Internet. 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