A non-person to the rest of the world: experiences of social isolation amongst severely impaired people with multiple sclerosis

Purpose:To gain insight into the experiences of, and potential solutions to, social isolation amongst severely impaired people with multiple sclerosis. Methods:A phenomenological research approach using face-to-face, in-depth semi-structured, audio-recorded interviews. Data were transcribed and analyzed thematically. Results:Sixteen severely impaired people with multiple sclerosis were interviewed (Expanded Disability Status Scale >6.5); aged 38-72 years, nine female, time since diagnosis ranged 3-30 years). Four key themes were generated in line with the study objectives, each with further sub-themes. The themes were (1) Definitions of isolation (2) Causes of isolation (3) Impact of isolation, and (4) Potential eases of isolation. Conclusions:Data portrayed social isolation as complex and multi-factorial in its definitions, its causes, and its impact. Isolation is not just about being lonely or left on one's own, but represents a spiral of impacts. Physical deterioration can lead to reduced choice and control regarding access to, and interaction with others and society, affecting personal identity. Sometimes this leads to further self-isolation. Personalised psychosocial support, with improved ease of access, focused on helping people with severe multiple sclerosis regain a sense of self and their place in the world may ease social isolation.