Social stigma of individuals with multiple sclerosis and the management of psychological distress – Is there any role for General Practitioners?

Maria Bakola, Anna Koralia Sakaretsanou, Konstantina Soultana Kitsou, Nikolaos Vaitsis, Stamatina Aggelakou-Vaitsi, Mohamed E. G. Elsayed, Eleni Jelastopulu

Keywords: multiple sclerosis, stigma, psychological distress, general practice

Background:

Multiple sclerosis (MS) is a chronic autoimmune disease affecting the central nervous system, often accompanied by social stigma leading to isolation and exclusion. This stigmatization contributes to mental health problems such as depression, anxiety and feelings of helplessness. Although general practitioners (GPs) do not primarily specialize in MS care, patients frequently rely on them for their emotional well-being and general healthcare needs.

Research questions:

What is the social stigma experienced by people with MS and their caregivers, and how can the distress caused by this stigma be addressed?

Method:

We conducted a cross-sectional study, from October 2022 to January 2023. Data collection involved the distribution of a comprehensive self-report questionnaire, that included demographic information, disease characteristics, experiences of social stigma, psychological distress, coping strategies, and perceived social support. Standardized scales including the Stigma Scale of Chronic Illness - SSCI-8, Kessler Psychological Distress Scale, Brief Resilient Coping Scale, and UCLA Loneliness Scale were used.

Results:

A total of 134 people, 70.1% women, with a mean age of 45.9 years participated in the study. Of these, 80.6% were diagnosed with MS, while the remaining included caregivers, family members and friends. 31.3% of MS patients sought creative coping strategies, with 14.2% feeling able to control their reactions and 24.6% capable of moving forward. Notably, 40.3% perceived discomfort from others due to their illness, while 52.3% reported feeling marginalized. Common mental health challenges included nervousness (58.2%), melancholy (47.1%), despair (32.8%), and anxiety (20.8%), alongside high rates of loneliness (58.2%) and feelings of misunderstanding (55.2%).

Conclusions:

This study highlights the significant impact of MS on the social lives and mental well-being of those affected. Isolation, stigmatization, and psychological distress are common challenges for patients and caregivers. GPs can significantly contribute by providing tailored support during diagnosis, relapse, disease progression, pregnancy, changes in symptoms, relationships, and medication decisions.

Points for discussion:

Can GPs and the MS care team collaborate effectively to provide personalized care for individuals living with MS? Should awareness of potential stigma faced by MS patients be increased among GPs?

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