Women's Narratives of Living with MS in the Family Context: Reconciling Complex Experiences, Integrating Complex Identities

This study explored women’s strategies for living with multiple sclerosis and
whether/how they maintained satisfaction with life amidst loss of physical
function. The family context emerged as a complex influence on participants’
process of managing illness and identity. Four narratives are examined,
provided by women in mid-life, with husbands and teenage/adult children.
Participants described many positive strategies for resisting domination by
illness, whilst also revealing numerous struggles, particularly in relation to
being a mother and wife who has MS. The narratives could not be easily
classified as they contained many contrasts and tensions. For example, the
women described receiving much care from family members, but also clearly
provided much care in return; they saw themselves as having special needs but
also great strengths; they often presented themselves as strong, but at certain
points admitted being overwhelmed by their situations; some oscillated
between seeing their illness, or their families, as the most stressful aspect of
life. The stress of illness varied to some extent according to the responses of
family members. Participants accepted that MS inevitably affected everyone in
the family system, but they simultaneously worked to protect other family
members and to minimise its intrusiveness. Coping with illness did not only
reflect individually chosen strategies. The women drew upon stories handed
down from parents and other family members about their ways of confronting
adversity. The numerous tensions within the women’s stories of coping with
MS show that illness is socially embedded and illuminate the complexity of
lives and social identity.