Living with Narcolepsy

Are You Awake?

Living with Narcolepsy

People think I’m lazy and sometimes rude. Or just don’t care. I can see how they would get that impression from just looking at me. But people shouldn’t be judged only on first appearances. I wish it was that easy to explain, but it’s not. I have a sleeping disorder called narcolepsy. It’s challenging to live with and has no cure at this time (Dement and Vaughan 205).

Narcolepsy is a chronic neurological disorder caused by the brain’s inability to regulate sleep-wake cycles normally. It is only diagnosed in one out of 2000 Americans (National Sleep Foundation). The main symptom is excessive and overwhelming daytime sleepiness. When I am supposed to be awake, my brain tells me I’m tired. Even after adequate nighttime sleep, I still find myself falling asleep at inappropriate times and places. Some people also experience hallucinations, sleep paralysis, cataplexy--a sudden loss of muscle control, or automatic behaviors performed without full awareness (NSF).

Narcolepsy can occur at any age, but is most frequently diagnosed between the ages of 15 and 25. Patients find that the symptoms tend to get worse over the next two to three decades following the first symptoms. There is strong evidence that narcolepsy may run in families; 8 to 12 percent of people with narcolepsy have a close relative with the disease (National Heart, Lung and Blood Institute). It is slightly more common in men than in women.

Since there is no cure for narcolepsy, doctors can only treat the symptoms at this time. With proper medication, most narcoleptics are able to achieve 80% or more of their potential alertness (NSF). Changes in behavior to encourage nighttime sleep, such as regular exercise, avoiding caffeine, and scheduled naps, are important too.

Narcolepsy causes many problems in daily life. Learning is often challenging. The undiagnosed narcoleptic child is often diagnosed with behavioral problems such as attention-deficit hyperactivity disorder (National Institute of Neurological Disorders and Stroke).They are branded as difficult and inattentive by their teachers. These labels often follow them through their whole school career. The kids themselves don’t understand why they feel so drained all of the time and it leads to low self-esteem, as they start to believe the negative things they hear about themselves. This has lasting effects on the rest of their life.

As an adult, working can cause major complications for some narcoleptics, although can find career success and job satisfaction. The best jobs involve interacting with others and keeping busy (NSF). Thanks to the American with Disabilities Act (ADA), employers must make reasonable accommodations, such as a modified schedule or short naps so work is possible (NSF). Narcoleptics should avoid jobs requiring regular driving and/or long commutes. Driving can cause extensive problems.

According to the National Institute of Neurological Disorders and Stroke, people with untreated narcolepsy have a ten times greater chance of being involved in a car accident. This is due to the sudden and