Being a teenager is inherently difficult. There’s no real way to make it to your twenties without feeling tired, cranky, and misunderstood by everyone around you. It’s even harder when your friends, family, and doctor label you a “lazy teenager” because of a chronic illness. One family shared their story in Now To Love.
When Ethan started refusing to wake up in the morning, at age 10, his mother, Sonia, assumed this was just the beginning of the sleepy teenage years. It was out of character, since Ethan had always been an energetic kid, but then again, his older brother had done the same thing. Over the following weeks, Sonia found it harder and harder to get her son out of bed. When he told his mother he was too exhausted to wake up for soccer practice, something he had always loved, his mother knew that something was wrong.
Although Sonia’s intuition told her this wasn’t normal, Ethan’s doctor was skeptical. He looked at Ethan, and just saw a teenager who didn’t want to go to class. That felt wrong to Sonia as well. It just didn’t sound like her son, who had always prioritized school.
The doctor’s visit was followed by a slew of blood tests at various medical centers, none of which provided any clues. Meanwhile, Ethan’s life grew consumed sleep. He’d wake up from a 16 hour nap, only to go to the bathroom, eat a quick bite of food, and fall back of sleep. He could sleep for 26 consecutive hours, and still feel tired afterwards.
No matter how severe Ethan’s symptoms were, his friends and family made the same assumption as his doctor. Sonia knew that nobody believed them, that people gossiped about his laziness behind their back. Although Ethan was ill, all anyone else could see was a walking stereotype.
While his extended family assumed he stayed awake playing video games, Ethan was distraught that he couldn’t stay awake for anything at all. Family outings to the bowling alley, dinners at restaurants, waiting rooms in specialist’s office all ended with Ethan drifting off. He found it embarrassing.
Eventually, Sonia pulled her son out of school. Nothing in his life could really develop if they didn’t know what was going on. He went to a center for adolescents, who, like him, were difficult to diagnose. This finally got the doctor’s attention, and she brought up the possibility of narcolepsy. Narcolepsy is a rare neurological disorder, which throws off a person’s sleep-wake cycle, resulting in uncontrollable sleep. To learn more about narcolepsy, click here.
Ethan struggled to stay awake as doctors observed his REM cycle, but at the end of the testing ordeal, the diagnosis was confirmed. This put an end to their four-year-quest. Instead of entering REM while he was asleep like other people, Ethan was already in the REM stage of sleep when he appeared to be awake. His brain never rested, even when he was sleeping, which caused his insatiable exhaustion.
While there’s no cure, they were relieved to simply know what was happening. Ethan tried out a couple medicines, eventually settling on sodium oxybate, which gave him a more restful, deeper sleep. When he awoke from his first peaceful sleep in years, Sonia cried out of joy. Her son had finally returned.
Ethan’s 17 now. He’s still tired, but he’s happy to be back in school.
It’s so easy for a disease that mimics an exaggerated stereotype of adolescence to go unnoticed, to be swept aside by doctors and the world at large. Ethan is fortunate to have a mother who fought along with him, as he battled through the depth of narcolepsy.
