Becoming known: Disclosure and exposure of (in)visible difference.

Abstract

Bodily or physical differences constitute a class of potentially stigmatized characteristics. The existing literature confirms that those with appearance altering or disfiguring conditions ("visible differences") may experience both felt and enacted stigma and seek to conceal their difference. Furthermore, issues relating to the disclosure or revelation of visible difference are frequently cited. The present study used qualitative methods to explore participants' experiences of having disclosed otherwise unknown or hidden visible differences to others and considered these experiences within the context of existing theories of the disclosure of stigmatized characteristics. Semistructured interviews were conducted with 15 participants who had a variety of visible differences. The data were analyzed through inductive thematic analysis with the resultant themes indicating participants' concerns and anxieties related to disclosing their differences, variable levels of agency within, preparation for, and control over the disclosure scenario, the importance of their difference being seen by others, and the personal and interpersonal changes that disclosure could facilitate. In consideration of participants' experiences of the disclosure of visible difference and the applicability of existing models of disclosure to this scenario, a working framework that incorporates the specific issues relevant to the disclosure of visible differences is proposed.

‘It was Supposed to be a Secret’: a study of disclosure and stigma as experienced by adults with differences of sex development

“…Disclosure concerning their different body was reported as unnecessary, except in situations where it would be visible. This ambivalence has also been described in other studies (Lampalzer et al, 2021 ; Sharratt, Williamson, Zucchelli, & Kiff, 2020 ) and may be related to feelings of stigma. Similar observations are documented in other populations affected by chronic and/or congenital conditions.…”

“…Participants’ accounts of doing preparations before revealing information about the condition is not unique to DSD. In a study done by Sharratt et al ( 2020 ), participants with different visible but concealable conditions (e.g. skin conditions or burn scarring on parts of the body that may not necessary be visible), discussed different ways and situations in which they took control over the disclosure process, e.g.…”

Assessing the usability and acceptability of Face IT@home: an online CBT intervention for people with visible differences

“…It is important to note that standard approaches to social anxiety, such as Clark and Well's (1995) or Rapee and Heimberg's (1997) models that are recommended by the National Institute for Health and Clinical Excellence (NICE, 2013) are not wholly appropriate for this population due to the very real discrimination and prejudice that they experience from other people (Thompson and Kent, 2001) and due to the impact that their visible difference has on their own body image and associated sense of stigma (Sharratt et al, 2020). However, the Face IT model broadly follows the active elements of intervention that are included within Rapee and Heimberg's (1997) model of social anxiety: psychoeducation surrounding social anxiety, cognitive restructuring, graded exposure, examination of core beliefs and relapse prevention (see Fig.…”

“…In keeping with this discrimination, Goffman's (1968) stigma model focuses more on the stigma that those with visible differences may experience from others, stating that having a different appearance is a characteristic that is 'devalued' by society and as such those with a visible difference are more likely to be excluded or rejected, which suggests a very real reason for experiencing social anxiety (Thompson and Kent, 2001). Individuals with visible differences can experience a sense of shame which leads to unhelpful strategies such as concealment of the appearance issue, avoidance of social situations in which their 'difference' may be detected and internalising a sense of being worthless or inadequate because they do not meet appearance norms (Sharratt et al, 2020;Thompson, 2011;Thompson and Kent, 2001). The intervention approach most appropriate to this model is a reframing of social anxiety as a result of stigma and following a more compassion-focused approach (Gilbert, 1997).…”

Predictors of adolescents’ response to Young Person’s Face IT: A web-based intervention to improve psychosocial adjustment to having an appearance-affecting condition (Preprint)

“…Having an appearance that is culturally devalued (Kent & Thompson, 2002, p. 103) and considered to deviate from normative standards has in many cases involved negative consequences for the affected person (Rumsey & Harcourt, 2004;Sharratt et al, 2020;Parnell et al, 2021). Historical examples (Shaw, 1981) and, in some cultures and contexts, current ones (Bradbury-Jones et al, 2018) show that individuals have reacted with shock and fear and turned to superstitious beliefs when seeing a person with an appearance that is visibly different from the rest of the community.…”