I am six years old, and I have narcolepsy and cataplexy. I am tired all the time. Sometimes I collapse or make funny faces when I have a cataplexy attack. Easy things like taking a bath, getting dressed, and putting my toys away are hard work for me because I use all my energy to stay awake. My friends don’t understand why I fall asleep at school, or why sometimes I talk in a loud voice (even inside) and chew on my tongue to stay awake. I get so frustrated when I fall asleep and don’t get to do things I love, like dancing, reading books about dragons, playing with my dolls, drawing, and playing with my friends. By the end of the day, I am so cranky that I sometimes yell at and hit my mommy and daddy. I don’t want to, and I feel really bad after I do it. Because I’m naughty when I’m tired, adults sometimes think that I am a bad kid, and that my mommy and daddy are bad parents. I also have really scary dreams at night, and sometimes I think they’re real. I don’t always feel safe or loved, even though I know I am. I wish more people would know about narcolepsy and know that it isn’t my fault.
Mari lives with narcolepsy. The symptoms of this incurable disorder include: falling asleep unexpectedly, extreme sleepiness throughout the day, disrupted sleep during the night, sudden loss of muscle control and even hallucinations.
But the impact of narcolepsy in daily life reaches far beyond these symptoms.