Disclosing the obvious: Psychosocial implications of (not) explaining facial differences.

Although the disclosure of invisible stigmatized identities has been frequently researched, little work has examined disclosure of facial differences (FD), in which stigma is often highly visible. People with FD are frequently expected by others to disclose or explain their condition. Qualitative work indicates that people with FD have a range of disclosure approaches from agentic disclosure (feeling obliged to disclose), autonomous nondisclosure (choosing not to disclose or to disclose only to certain people), and autonomous disclosure (choosing to openly disclose). The purpose of the present study was to validate these disclosure approaches in a large international sample, examine their frequency of use, and test their relationship to psychosocial outcomes using validated measures. English-speaking participants (n = 288) with 33 different types of FD completed an online survey of disclosure approaches and psychosocial outcomes (i.e. anxiety, depression, self-esteem, stigma, job satisfaction, and relationship self-concept). Participants disclosed to 59 % of the people they knew. Selective and indiscriminate disclosure were the most frequently used and recommended approaches. As predicted, autonomous disclosure was associated with more positive psychosocial outcomes than agentic (non)disclosure and autonomous nondisclosure. Findings from this study can support disclosure autonomy, and thus positive psychosocial outcomes, among people with FD.

Enacted Stigma Experiences and Identity Noticeability of LGBQ+ Women with Rare Diseases.

Lesbian, gay, bisexual, and queer (LGBQ+) people and those with rare diseases (RDs) experience considerable enacted stigma due to their sexual identity and disability/RD status. The frequency, severity, and type of enacted stigma is often influenced by identity noticeability. Although research has shown the challenging impacts of compounded oppression on multiply marginalized individuals, there has been no empirical research to date on the experiences of LGBQ+ women with RDs. This mixed methods study used survey and interview methods to explore enacted stigma experiences and identity noticeability of 29 LGBQ+ women with RDs. We found that RD visibility had a significant positive correlation to RD stigma. Additionally, age had a significant negative correlation to RD stigma and RD visibility. Common concerns for participants included healthcare stigma, sexual identity erasure, RD and/or LGBQ+ community exclusion, and heteropatriarchal expectations and norms. Increased research and support are needed for LGBQ+ women with RDs.

Social support, stress, and life satisfaction among adults with rare diseases.

OBJECTIVE: The goal of this study was to examine the role of stress and four different types of social support in satisfaction with life (SWL) among adults with rare diseases (RDs). We examined whether support is directly related to SWL (main effects model) or related through moderating the inverse relationship between stress and SWL (stress-buffering hypothesis). METHOD: Data came from a cross-sectional survey of adults living in the United States diagnosed with any RD. Participants (n = 1,203) filled out measures of stress, four short-form scales of social support (emotional, informational, tangible, companionship), and SWL. Hierarchical multiple regression was used to test both the main effects model and stress-buffering hypothesis. RESULTS: Controlling for age, gender, years since diagnosis, and symptom severity, emotional support, but not informational or tangible support, positively predicted SWL. Companionship support was related to SWL over and above other factors. Stress negatively predicted SWL, but none of the types of support moderated this relationship. CONCLUSION: Results suggest companionship and emotional support are beneficial to individuals with RDs regardless of their stress levels. Intervention research should focus on ways to foster more companionship and emotional support to improve SWL in this underserved population. (PsycInfo Database Record (c) 2020 APA, all rights reserved).