Meanings of women's experiences of living with multiple sclerosis

Abstract: The aim of this doctoral thesis was to describe meanings of women's experiences of living with multiple sclerosis (MS). It focuses specifically on the women's experiences of daily life (I), the experience of fatigue (II), experiences of feeling well (III) and experiences of treatment (IV). Narrative interviews were conducted with 25 women living with MS and the interviews were analyzed from a phenomenological hermeneutic interpretation.For women with MS, living with an unrecognizable body meant that the deterioration of their bodies had become clear and served as a hindrance in daily life. The experience of fatigue seemed to mean that the body instead of working as an implement in order to manage daily life had become an enemy. These experiences included bodily changes, which were evident to others, and imposed feelings of being met in a different way. The ill body threatens the women's dignity and they expressed being avoided by others as hurtful. Despite the fact of all aspects of daily life are being affected by illness, the women with MS nevertheless do find ways to experience feeling well. Feeling well, for women with MS can be understood as finding a pace where daily life goes on and the illness is not the dominant experience.This thesis suggests that meanings of women's experiences of living with MS can be comprehended as a movement between the two dimensions of having a value and feeling unimportant to others. In the dimension of having a value, feeling well is brought forward, meanwhile the dimension of feeling unimportant to others, implies suffering in the daily lives of women with MS. For these women recognizing oneself as valuable and sharing an understanding are important in order to feel dignified in daily life and to experience feeling well.