Stigma of visible and invisible chronic conditions

Abstract

Nurses deliver care to people with various forms of chronic illnesses and conditions. Some chronic conditions, such as paraplegia, are visible while others, such as diabetes, are invisible. Still others, such as multiple sclerosis, are both visible and invisible. Having a chronic illness or condition and being different from the general population subjects a person to possible stigmatization by those who do not have the illness. Coping with stigma involves a variety of strategies including the decision about whether to disclose the condition and suffer further stigma, or attempt to conceal the condition or aspects of the condition and pass for normal. We present a beginning framework that describes the relationship between the elements of stigma and the decision to disclose or hide a chronic condition based on its visibility or invisibility. The specific aims were to combine the results from a meta-study on qualitative research with a review of the quantitative literature, then develop a theoretical framework. Although an understanding of how patients cope with stigmatizing conditions is essential for nurses who aim to deliver comprehensive individualized patient care, there is little current literature on this subject. The relationship between visibility and invisibility and disclosure and non-disclosure remains poorly understood. A framework to facilitate a deeper understanding of the dynamics of chronic illnesses and conditions may prove useful for practice.

Dealing with self-management of chronic illness at work: predictors for self-disclosure

“…According to Goffman (1974), stigmatised groups are viewed as 'inferior' and are discredited by groups that are considered 'normal' and in the majority. Those suffering from such stigmatising conditions are reported to not disclose their illness to their employers or colleagues, in fear of discrimination, stereotyping and prejudice (Joachim & Acorn, 2000;Vickers, 1997). However, it is not known under what conditions the perceived risks associated with stigmatisation may be outweighed by perceived benefits of disclosure -such as use of medication or need for practical support -or vice versa.…”

Living with invisible illness: social support experiences of individuals with systemic lupus erythematosus

“…According to Joachim and Acorn's [25] theoretical model, patients with invisible chronic conditions can choose not to disclose their illness, or to engage in protective, spontaneous, or preventive disclosure. The latter involves both concealment and disclosure and is considered an appropriate strategy for individuals with an invisible condition that is not under their control.…”

Life experiences of individuals with hereditary hemorrhagic telangiectasia and disclosing outside the family: a qualitative analysis

“…Stigma involves an individual's social identity perceived as undesirable and different, a state that Goffman (1963) referred to as Bdiscredited^ (Ablon 2002). In chronic illness, the body's physical appearance can discredit an individual, while a Bhealthy^appearance can allow an individual with chronic illness to conceal their condition (Christian and D'Auria 1997;Joachim and Acorn 2000;Lowton 2004;Admi 1995). Individuals with cystic fibrosis (CF) reported hiding their condition during childhood in order to fit in socially (Christian and D'Auria 1997), while adults with severe signs and symptoms of CF were more likely to share their diagnosis than mildly affected adults who appeared Bhealthy^ (Lowton 2004;Modi et al 2010).…”