ADJUSTING +/- DIAGNOSIS

Even while raregivers are waiting for test results, coordinating care with healthcare providers, and navigating insurance, they still have to find ways of managing their loved one’s symptoms. Raregivers say they spend a lot of time and energy contacting and liaising with providers and specialists, sourcing and acquiring adaptive equipment, and seeking and accessing support services. Raregivers are often doing all of these tasks whilst also managing the disparate needs of other children and members of the family and planning for their loved one’s future care.

Learning about genetics

Once a diagnosis is made, cascade genetic testing and/or genetic counseling might be offered to other family members. Genetic testing identifies the genetic basis for a rare condition and provides information to help parents and raregivers make healthcare conditions. Raregivers say the learning curve about genetic testing is steep, but necessary. 

Complex care coordination

Rare diseases are generally complex and require specialist care that involves coordinating input from health professionals across different disciplines, clinics, and hospitals. Few healthcare settings do this care coordination for patients. Depending on location, insurance, and other factors, raregivers often spend considerable time and energy finding a way through the healthcare system, including insurance and financial assistance, and coordinating care across different types of providers. Strain on family budgets may increase during this adjustment phase. 

Lack of treatment

Even when a diagnosis occurs, health professionals do not necessarily know about or are able to share information about rare diseases or their potential treatment options, and not all rare conditions are associated with effective or curative therapies. 

Emotions: Overwhelm, fatigue, “Hero”

Recognizing and acknowledging that treatment might not be available or effective whilst also trying to coordinate care for loved ones places a tremendous burden on raregivers to be a “hero.” But being a hero on a daily basis causes fatigue and putting on the hero’s cloak quickly causes overwhelm. 

Caregiver Support: Let Go of the Hero’s Cloak 

• Connection with disease-specific patient organizations can provide support, information about rights, and opportunities to share caregiving experiences and learn from others. 

• Give an Hour’s Emotional Life Skills® provides accessible tools to help caregivers track their emotional health, identify signs of emotional suffering, and create healthy self-care habits.