An Exploratory Investigation of Social Stigma and Concealment in Patients with Multiple Sclerosis

Cook, Jonathan E.; Germano, Adriana L.; Stadler, Gertraud

doi:10.7224/1537-2073.2015-021

Cited by 47 publications

(38 citation statements)

References 30 publications

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“…While people with both visible and less apparent stigmas strive to maintain positive self‐impressions, those with hidden stigmas have more choice over whether and when to disclose their conditions, and more fear of being discovered should their stigmas be unintentionally revealed. Although there are many benefits to disability disclosure (see Bogart, Lund, & Rottenstein, ), people with less apparent stigmas sometimes intentionally hide their conditions from public scrutiny to protect themselves from prejudice (Cook, Germano, & Stadler, ; Goldberg, Killeen, & O'Day, ). For example, passing as nondisabled is one way to cope with a stigmatized status in order to escape the negative consequences of stereotyping and discrimination.…”

Section: Hostile Ableism Researchmentioning

confidence: 99%

Hostile, Benevolent, and Ambivalent Ableism: Contemporary Manifestations

Nario‐Redmond

Kemerling

Silverman

2019

Journal of Social Issues

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Disabled people experience ableism in many forms from the seemingly benevolent to the blatantly hostile, and more ambivalent or mixed forms (e.g., paternalistic/condescending and jealous/envy). Rooted in historic and contemporary frameworks, this study explores the experiences of an international sample of disabled people (N = 185) using six open-ended questions to assess some of the manifestations of ableism documented in the literature. We found that experiences with paternalistic forms of ableism were among the most pervasive followed by inspirational, hostile, envious, and dehumanizing forms while fears of becoming disabled or "catching" disability were less commonly reported. Furthermore, some forms of ableism (e.g., infantilization, unwanted help, and invasions of privacy) were more common among those with visible impairments whereas invalidation and accusations of fraud were more common among those with less apparent conditions. Implications for policies related to hate crimes, health care, and media representations are discussed along with directions for future research.If I tell someone I don't like their pitying behavior or point out that their kind intent had a harmful impact, they become hostile, usually accusing me of being ungrateful or disabled people like me as "too sensitive" (Person with multiple disabilities, 2015). People go from pity party, you're so inspirational to you're an ungrateful bitch really fast when I turn down help. (Person with multiple disabilities, 2015).In many ways, the manifestations of ableism are comparable to other minority group prejudices expressed as fear, denigration, and dehumanizing actions on the

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Section: Hostile Ableism Researchmentioning

confidence: 99%

Hostile, Benevolent, and Ambivalent Ableism: Contemporary Manifestations

Nario‐Redmond

Kemerling

Silverman

2019

Journal of Social Issues

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“…Simply being different ("separate") can make others uncomfortable and thus strain interpersonal relationships, particularly as disease symptoms emerge (Joachim & Acorn, 2000;Jones et al, 1984). Because of the stigma associated with MS, people often try to conceal their diagnosis (Cook et al, 2016).…”

Section: Introductionmentioning

confidence: 99%

Identity Concealment and Chronic Illness: A Strategic Choice

Cook

Salter

Stadler

2017

Journal of Social Issues

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The research presented here investigates potential psychological and health consequences of concealing a chronic illness. Data were collected from 2,500 individuals living with multiple sclerosis (MS), as part of an ongoing longitudinal research project. Questions on identity concealment and psychosocial reserve (a broad measure of well‐being) were embedded in a semi‐annual national survey. Responses were linked to each participant's concurrent responses to questions about their disability status, and prospectively to the same measure of disability status 1 year later. Just over 16% of respondents indicated that it was mostly true to very true that they actively concealed their MS and most indicated at least some degree of concealment. For people at lower levels of disability, decisions to conceal or disclose were not related to their levels of psychosocial reserve. However, with rising disability, concealment predicted lower levels of psychosocial reserve. Concealment was also associated with improved disability status 1 year later. A mediation analysis suggests that this may be in part because people who concealed were more likely to be employed. Taken together, the current research adds to the evidence that consequences of concealment often may be multifaceted and depend on a variety of moderators, including degree of disability.

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“…Over time, MS symptoms tend to progress and can lead to severe disability. 2 Most people with MS experience social stigma as a result of their MS at mild-to-moderate levels, 3,4 with potential implications for their health. Stigma occurs when people are labeled as different, separate, and of lower status based on some characteristic (such as MS), and are thus negatively stereotyped and/or discriminated against.…”

mentioning

confidence: 99%

Adapting to Multiple Sclerosis Stigma Across the Life Span

Spencer

Silverman

Cook³

2019

International Journal of MS Care

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Background: Most people with multiple sclerosis (MS) experience social stigma at mild-to-moderate levels, with potential implications for their health. However, little is known about how adults adapt to social stigma across their lives, or with respect to MS stigma in particular. Using a large national database and controlling for confounding demographic and health-related variables, this study examined whether longer MS duration was associated with reports of stigma in people with MS. Methods: Data were available from 6771 participants enrolled in the semiannual survey conducted by the North American Research Committee on Multiple Sclerosis (NARCOMS). Participants completed measures of MS stigma and reported on demographic and health-related covariates. Results: With disability level, age, and other demographic and health-related covariates taken into account, the longer respondents had lived with MS, the less stigma they felt. Results were similar for people's anticipation of stigma and their feelings of isolation because of stigma. Conclusions: As people gain experience living with MS, their adaptations to the social aspects of their illness may allow them to structure their lives so that they can mitigate the impact of stigma. Doctors, therapists, and other health care personnel should consider that patients with MS might be especially concerned and distressed by stigma earlier in the course of their illness.

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An Exploratory Investigation of Social Stigma and Concealment in Patients with Multiple Sclerosis

Cited by 47 publications

References 30 publications

Hostile, Benevolent, and Ambivalent Ableism: Contemporary Manifestations

Hostile, Benevolent, and Ambivalent Ableism: Contemporary Manifestations

Identity Concealment and Chronic Illness: A Strategic Choice

Adapting to Multiple Sclerosis Stigma Across the Life Span

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