The “Journey” of Patients with Multiple Sclerosis in Greece—A Qualitative Study

Abstract

Background: Multiple Sclerosis (MS) affects sufferers' lives and requires everyday efforts to manage its challenges. Aim: The aim of this study was to explore MS patients' lived experience of their "journey" in MS. Method: A qualitative methodology was adopted and semi-structured interviews with 17 MS patients, living in Attica and Thessaly regions, in Greece, were conducted. Research material was transcribed and analysed using Interpretative Phenomenological Analysis (IPA). Results: Analysis revealed five superordinate themes: 1) The journey to diagnosis describes the lived "journey" of patients with MS, from the first symptoms, to the main symptom and the diagnosis; 2) The image of the welfare state refers to participants' experience with the health system and the welfare state; 3) Coping with MS describes participants' efforts to identify and understand MS as well as their coping strategies; 4) Living with MS describes patients' experiences of everyday living with the disease; 5) Doctor-patient relationship describes patents' efforts to communicate with their doctors. Overall, it was found that MS dominated patient's life. It was closely connected with disability, represented as "the wheelchair", and perceived as "evil". However, MS enhanced patients' uniqueness and their sense of belonging to a unified group, with common understanding, clearly separated from all other healthy people. Patients experienced negative consequences at work, family relationships and everyday life. On the other hand, MS patients were eager to share their experience, support newly diagnosed patients, fight for patient rights and contribute in the change of stereotypes regarding MS. Views of the future included fears of losing autonomy and body control, uncertainty of the disease progression and worries of being dependent on others. Conclusions: MS constitutes a significant multitasking challenge to deal with. The "journey" could become smoother if specific health policy measures that were suggested by the patients facilitated their efforts to access qualitative services.