Guest Editorial: Stigma and Identity in Multiple Sclerosis

Employers do discriminate against those with disabilities, especially if they believe that you will drive up health costs. If you can conceal big health problems, always do.

The advice above was offered some time ago to a jobseeker posting a question on an online forum about whether to reveal a chronic illness during a job interview. The question and the advice reflect a concern about discrimination. Chronic illness becomes a stigma—“a mark that designates the bearer as ‘spoiled’ and therefore as valued less than ‘normal’ people.”^1(p3),² One way people try to cope with stigma is by concealing important parts of themselves.²

People with chronic illnesses often feel stigmatized by others.³ The emerging literature in MS, including articles in this issue, suggests that moderate concerns of stigma are common among most people with MS. A sizable subgroup experiences high levels of stigma. Stigma is an important contributor to trajectories of chronic disease⁴ and has been posited as a social determinant of health.⁵

Stigma can undermine health in a number of ways. Members of stigmatized groups are more likely to experience discrimination in ways that limit access to employment, housing, or quality medical care.⁴ In addition, expectations or experiences of stigma can be stressful and isolating, undermining health directly and indirectly though harmful coping strategies.⁵

Despite its potential importance to the lives of people with MS, stigma has been relatively understudied in the MS literature. Thus, it is important to understand more about the role of stigma as a potential barrier to health, well-being, and positive health behaviors in people with MS.

The articles in this issue contribute to a more comprehensive understanding of MS stigma by examining the topic from a variety of perspectives. Article topics range from the psychometric properties of a short scale to assess MS stigma (Ballesteros and colleagues) to an exploration of the association between MS stigma and perceptions of body image (Stevens and colleagues). They examine MS stigma and identity across the life span using qualitative (Barker and colleagues) and quantitative (Spencer and colleagues) analyses and note how stigma predicts a lower likelihood of employment and a greater need for care (Hategeka and colleagues). Identifying stigma as a potential barrier to positive health behaviors is important for developing novel intervention strategies to reduce the effects of stigma. As one example, Grech and colleagues note how positive coping strategies can be taught to more helpfully manage stigma.

Stigma can be an independent contributor to disease progression and undermine quality of life. Fortunately, understanding more about stigma and its correlates offers opportunities for targeted intervention efforts. Such efforts could include psychological interventions aimed at people with MS to help reduce stress from stigma and promote positive health behaviors. Interventions could also include educational and procedural approaches aimed at health care providers and the general public that promote culturally competent care and help reduce stigma. Understanding more about MS stigma is consistent with recent efforts to promote self-efficacy in people with MS and encourage active participation in shared decision making. More generally, these emerging topics speak to an increased understanding of the role of psychological processes in the treatment and management of MS.