A Qualitative Study Examining Experiences and Dilemmas in Concealment and Disclosure of People Living With Serious Mental Illness

Abstract

People with mental illnesses face the dilemma of whether to disclose or conceal their diagnosis, but this dilemma was scarcely researched. To gain in-depth understanding of this dilemma, we interviewed 29 individuals with mental illnesses: 16 with major depression/bipolar disorders and 13 with schizophrenia. Using a phenomenological design, we analyzed individuals' experiences, decision-making processes, and views of gains and costs regarding concealment and disclosure of mental illness. We found that participants employed both positive and negative disclosure/concealment practices. Positive practices included enhancing personal recovery, community integration, and/or supporting others. Negative practices occurred in forced, uncontrolled situations. We also identified various influencing factors, including familial norms of sharing, accumulated experiences with disclosure, and ascribed meaning to diagnosis. Based on these findings, we deepen the understanding about decision-making processes and the consequences of disclosing or concealing mental illness. We discuss how these finding can help consumers explore potential benefits and disadvantages of mental illness disclosure/concealment occurrences.

“That little doorway where I could suddenly start shouting out”: Barriers and enablers to the disclosure of distressing voices

“…Our results partly concur with previous findings that fear of being judged negatively is related to not disclosing (Bay et al, 2016;Sickel et al, 2016). Alternatively, Bril-Barniv et al (2017) found that, for some, mental health disclosure was a proactive decision, attributed to an effort in encouraging social change.…”

“…Consequently, our data offers insight into the processes of first disclosure among people who live with a stigmatized health condition. In addition, through focusing on a single symptom (hearing voices), this study adds to the literature on the disclosure of mental illness (Bril-Barniv et al, 2017).…”

Stigma is a prominent barrier for parental disclosure of a child with a mental illness

“…This disclosure resulted in some relief for parents and some positive reactions towards them and the child. However, based on Eaton and colleagues, as well as other studies,1 disclosure might later lead to negative consequences due to mental health stigma, and to others’ use of this personal information. Selective disclosure,1 2 choosing whom to share with, what to share and when, can be helpful when coping with a mental illness.…”

“…Understanding mothers’ behaviours and trying to help them have meaningful conversations about their situation within and outside their family is critical. First, family disclosure norms and conversations about mental illness impact their children’s tendency to disclosure or concealment later on in life 1. Second, these conversations may further impact their self-stigma, that is, the process by which an individual accepts and incorporates negative stereotypes about mental illness into their identity 5.…”

The mental health consumer movement and peer providers in Israel

“…This is understandable, given the inherent contradictions between peer models and traditional medical model that is salient in MH structures. The peer rolein its purest form, is a contributor of knowledge-by-experience to the professional scholastic body of knowledge (Borkman, 1976(Borkman, , 1990. Naturally, there is a risk of dilution of the peer role's distinct potential due to its vulnerable position prone to 'co-optation'a 'state of tension between formal authority and social power' (Selznick, 1948, p. 35, see also Thompson & Coskuner-Balli, 2007Baur & Schmitz, 2012).…”