OBJECTIVES: Living with multiple sclerosis (MS), a chronic, incurable and sometimes progressive illness, constitutes a major challenge. This study explored the lived experiences of people with MS in their everyday life.

METHODS: Seventeen people with MS, living in Attica and Thessaly regions, in Greece, were recruited through the Association of People with Multiple Sclerosis and interviewed using semi-structured interviews. Patients’ mean age was 39.6 years; the mean time of being diagnosed with MS was 12.6 years. All interviews were recorded, transcribed and analysed using the Interpretive Phenomenological Analysis.

RESULTS: Five interrelated superordinated themes emerged: (1) The journey to diagnosis, (2) patients' perceptions of social policies, (3) coping with MS, (4) doctor-patient relationship, (5) living with MS. MS dominated patients’ life, triggering fears of losing autonomy and body control, uncertainty of the disease process and worries of being dependent on others. At the same time, MS patients use a variety of coping strategies, also being supported by their family, friends, doctor and “co-patients”. Each MS patient feels unique and all MS patients unified in a group, with common understanding, clearly separated from all other healthy people. MS was closely connected with disability and “the wheelchair”, while perceived in multiple ways such as “evil”, “test”, “mind game”, “unknown”, “erratic”. However, many patients were eager to share their experience with their wider social environment and felt eager to support newly diagnosed patients, fight for patient rights and contribute in the change of stereotypes regarding MS.

CONCLUSIONS:MS has a major negative impact on patients’ lives. MS health-related policies should facilitate them in dealing with the challenging tasks of managing multiple life dimensions such as health, family and work issues, by strengthening MS networks and enhancing individual capacities.