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. 

Learning about the disease

Diagnosis can bring relief but scouring the internet for symptom and disease related information, diagnostic tests, and treatment options is a constant for many rare disease raregivers, especially if there are no current treatment options. 

Becoming the expert/advocate

Raregivers often spend a great deal of time researching their loved one’s disease or condition, as well as possible treatments and relevant clinical trials. As such, they become the “expert” in their loved one’s rare disease. Rare raregivers say they often find themselves educating health professionals about the rare disease or condition. 

Learning new supportive care skills

Many rare conditions require extensive, long-term supportive care and specialist services such as physical therapy, occupational therapy, and speech therapy. These services are not always covered by commercial health insurance, Medicare, or Medicaid. As a result, raregivers say they have to learn new skills (e.g., medication or oxygen administration, tube feeds, manual handling, lifting) and develop supportive care and nursing expertise.

Emotions: Resistance to role, “Expert”

Raregivers say they feel frustrated about having to become experts in their loved one’s rare disease. The more that raregivers learn about their loved one’s rare disease, they further they might feel from their “old normal” and the “normal” of other people’s family lives. 

Caregiver Support: Social and Emotional Support

• Emotional and companionship support can help caregivers to feel understood at a point in their caregiving journey when a sense of identify shift feels especially acute. 

• Informal support from other rare caregivers and patient communities can be an invaluable starting point for social and emotional validation. 

• Counseling and cognitive behavioral therapy are effective strategies to sustain mental health and wellbeing.