3: Shifting Responsibilities

Family life changes as the need for caregiving increases, especially for women (as mothers, relatives, and partners), who are the dominant raregivers for people with rare diseases. Caregiving is time-intensive and involves adopting multiple roles such as care coordinator, researcher, decision-maker, and advocate. Becoming the main caregiver can place strain on those giving care as they try to balance employment, family life, and caregiving. Becoming a caregiver can also mean losing other meaningful sources of identity and lead to feelings of loneliness and abandonment.