When the Invisible Becomes Visible: Deconstruction Stigma and Changing Identity by Exploring the Lived Experience of Those with Multiple Sclerosis

Abstract

This paper examines the lived experience of multiple sclerosis (MS) through the lens of stigma. Stigma is a social phenomenon through which people who are deemed outside the norm, due to either behavior or appearance, become vulnerable to being discredited or ostracized. The case of MS is interesting, because while it eventually manifests in distinct outward physical signs, individuals with the disease often live for years without outward symptoms, meaning that their stigma-inducing qualities are latent, but not yet seen. Pre-symptomatic individuals, in attempting to manage the inevitable stigma, must balance the risks and benefits of choosing whether to pass or reveal. The seismic physiologic shifts MS flares cause result in changes to both an individual’s physical and social capabilities, thus affecting individual’s roles and subsequent emotional well-being, which can be further impacted by social stigmatization. As a result of physical limitations, individuals with MS experience stigma in the form of employment discrimination, co-worker misunderstandings, and familial over or under attention to their illness. These factors only exacerbate the emotional despondence these individuals experience from a loss in their identity. By looking at the literature on stigma formation, management of invisible social identities, and the stigma of MS, an appreciation for the lived experience of MS can be gained. Such an appreciation can hopefully lead to methods to prevent the marginalization of such groups and foster supportive measures and education that helps deconstruct the stigma.