What is wrong with my child? Narcolepsy and its emotional burden on parents

Narcolepsy is a lifelong disorder that is underdiagnosed and misunderstood. It is typically years before a proper diagnosis is made. During this time, the functional decline in the child can be quite worrisome. Symptoms of narcolepsy significantly affect multiple aspects of one's life including academic, social, and behavioral functioning. There is a heavy burden placed on parents of children who are diagnosed with narcolepsy. Caring for a child with a chronic illness is challenging, especially when treatment involves buy-in and coordination of multiple individuals including educators, coaches, friends, and extended family. Addressing caregiver fatigue and the emotional toll placed on parents is an important part of treating the whole child.