NOTICING CHANGES

The appearance of first symptoms to the point of diagnosis can be a long, painful journey for raregivers. The raregiver journey often starts with a gut feeling—something’s not quite right—that leads to questions. What’s wrong? What's going on? How do we fix this? Who do we talk to? 

Desire for Diagnosis 

Many rare diseases are hard to recognize and diagnose. The desire for answers leads raregivers to consult with multiple primary care providers and different kinds of specialists in order to answer that question, “what’s wrong?” Rare disease raregivers say that finding answers, or a diagnosis, can take years (on average, 5-7 years) and in the process, raregivers become—need to become—experts in asking the right questions.

Engage Healthcare/Bureaucracy

Finding reasons for symptoms can lead to a range of exploratory tests, hospitalizations, travel to see disease specialists, surgeries, and even misdiagnosis. Communicating with health professionals can be challenging. Healthcare providers do not always provide clear explanations for why tests are necessary, or provide information about costs, insurance, and how to be a caregiver. 

Lack of Disease-Specific Information

The diagnostic journey (or odyssey) can be circular. Tests might rule out one diagnosis but circle back to the unknown. Partial answers, the uncertainty that comes with waiting for test results, and lack of diagnosis can pull raregivers down the time-consuming and energy-sapping rabbit hole of online research, scouring the internet for symptom- and disease-related information, diagnostic tests, and treatment options. 

Emotions: Fear, anxiety, shame, “Savior”

Raregivers say that fear about the future, anxiety about the unknown, fatigue from navigating health care and insurance are all common experiences in the early stages of noticing changes in their loved ones. Raregivers might also feel shame when they aren’t able to find answers or provide solutions. 

Caregiver Support 

• Relief Tip: Reflect and name your emotions through journaling or a conversation with a trusted resource. 

• Access to mental health and wellbeing programs in the early stages of caregiving will create a foundation for building self-care skills.

• ANGEL AID’s The Sustainable Caregiver program provides strategies for embracing change, as well as tips, tools and rituals for self-care to sustain long-term caregiving.