“Sticking jewels in your life”: Exploring women’s strategies for negotiating an acceptable quality of life with multiple sclerosis

Abstract

This study explored women’s strategies for living with multiple sclerosis (MS). Twenty-seven women were interviewed, most of whom had lived with MS for more than five years. Analysis of the semi-structured interviews followed the interpretative phenomenological approach. The women portrayed living with MS as an ongoing process of negotiation, and described gaining quality of life through looking after their health; maintaining a familiar self-image, particularly through meaningful occupations, and adapting pre-illness skills and interests to their changing levels of physical functioning; actively valuing positive life experiences, including finding benefits in adversity; clarifying values, priorities and philosophy of life; and maintaining mutual, caring relationships. Some regarded MS as presenting opportunities for personal growth. Without minimizing the very substantial difficulties that MS presents, the findings suggest that well-being derives from both managing the illness and also embracing life’s wider experiences, including change and growth. Implications for rehabilitation and counseling professionals are considered.