Unfortunately, stigma is something many patients are all too familiar with.
Patients with chronic pain may be labeled as drug seekers. Patients who occasionally need assistance walking and sometimes don’t may be told they are faking their disability. Patients who are chronically fatigued may be judged as being lazy.
Most of the stigma surrounding chronic illness comes from a general lack of knowledge. For people with rare diseases, that gap in understanding can be even worse. For many, their peers will have never heard of their disease, let alone know what it entails.
Narcolepsy is a disorder that has been historically misrepresented in the media. It’s often been made light of on TV. Viewers with no background knowledge or personal experience with narcolepsy found the people shown pretending to fall asleep in the middle of walking humorous. The reality of living with narcolepsy is far from it.
Kristina was recently diagnosed with narcolepsy after years of being symptomatic.
She explains in the video below how she’s experienced the lack of awareness surrounding narcolepsy. There are varying types of severity of narcolepsy but all of them are serious can have a profound impact on the life of the sufferer. Before Kristina was diagnosed she was in several car accidents because it was impossible to fight her body’s urge to sleep. She suffers from nighttime wakefulness and cataplexy as well as hypnagogic hallucinations.
Kristina has never had the chance to speak with others with narcolepsy so be sure to comment below if you relate to her experience. Don’t forget to check out the rest of Patient Worthy’s video series with Kristina!
