When my middle son was a freshman in high school, he was diagnosed with narcolepsy. Before we understood what was happening, it felt like an endless battle just to keep him awake. He would fall asleep in class, no matter how much sleep he got the night before. He would doze off on the city bus, sometimes missing his stop entirely. One of the most telling moments was at his brother’s wedding reception, where he fell asleep on the floor in the middle of the celebration. No matter how much I tried to keep him engaged or moving, the exhaustion would take over.
Mornings were even worse. Waking him up felt impossible. He would barely open his eyes before slipping right back into sleep. At first, I thought it was defiance or laziness. I tried everything—early bedtimes, loud alarms, shaking him awake, even consequences for being late. Nothing worked. Before his diagnosis, I was frustrated and exhausted, feeling like I was constantly fighting against him. It was only after his sleep study and further testing at the epilepsy clinic that we finally had answers. When I realized that he was not choosing this, my approach shifted. I stopped seeing it as something he could control and started responding with more compassion and understanding.
Understanding Narcolepsy: How It Affects You
Narcolepsy is a chronic neurological disorder that affects the brain’s ability to regulate sleep-wake cycles. It is not simply a case of feeling tired during the day. It is a serious medical condition that can impact nearly every aspect of your life, from work and relationships to your safety and emotional well-being.
Watching someone you care about live with narcolepsy can be confusing, frustrating, and even frightening at times. You might see them struggle to stay awake during conversations, suddenly lose muscle control when laughing, or experience terrifying hallucinations that feel real to them but are invisible to you. It can be difficult to understand why they seem exhausted no matter how much they sleep or why they suddenly need to nap in the middle of the day.
You may feel helpless when they miss out on important moments, withdraw from social activities, or battle frustration over their unpredictable symptoms. It is easy to assume they are just not trying hard enough, but narcolepsy is not about willpower—it is a neurological disorder they have no control over. The best thing you can do is be patient, educate yourself, and offer support. Understanding their condition can make a world of difference, helping them feel less alone in a battle they never chose to fight.
What Happens When You Have Narcolepsy?
If you have narcolepsy, you may experience extreme daytime sleepiness, no matter how much rest you get at night. You might struggle to stay awake in situations where most people would have no difficulty, such as while talking, eating, or even driving. The need to sleep can become overwhelming, and you may have little control over when these episodes happen.
Another symptom you might experience is cataplexy, which is a sudden loss of muscle control triggered by strong emotions. Laughter, excitement, anger, or even surprise can cause your knees to buckle, your head to drop, or your body to collapse. Even though you are fully conscious, you are unable to move for a brief period. Some people experience mild cataplexy, such as slight muscle weakness in the face, while others may have severe episodes where they completely lose muscle tone.
You may also have episodes of sleep paralysis, which happen when you wake up or fall asleep and are temporarily unable to move or speak. These episodes can last from a few seconds to a couple of minutes. Sometimes, sleep paralysis is accompanied by hallucinations, which are vivid, dream-like images or sounds that seem real. These can be terrifying, making it feel like someone or something is in the room with you when no one is actually there.
The Daily Impact of Narcolepsy
Living with narcolepsy can be extremely challenging. The unpredictability of sleep attacks and cataplexy can make daily tasks more difficult. You might struggle with concentration, memory, and overall productivity. Simple tasks that require sustained attention, such as reading or watching a movie, may become frustrating because of frequent drowsiness.
Narcolepsy can also affect your emotional well-being. You may feel isolated if others do not understand your condition. People might assume you are just lazy, uninterested, or not trying hard enough. The emotional toll of constantly fighting sleep, dealing with cataplexy, and struggling with brain fog can lead to frustration, anxiety, or depression.
Your social life and relationships may also suffer. You might avoid certain activities because you fear falling asleep unexpectedly or experiencing cataplexy in front of others. Friends and family may not fully grasp what you are going through, making it difficult to explain why you suddenly need to sleep or why your body reacts the way it does to emotions.
How to Manage Narcolepsy
Although there is no cure for narcolepsy, treatment and lifestyle changes can help manage symptoms. A combination of medication, scheduled naps, and good sleep habits can make a significant difference.
Medications: Stimulants and other prescription drugs can help you stay awake and reduce cataplexy episodes.
Scheduled Naps: Short, planned naps throughout the day can improve alertness and help you function better.
Consistent Sleep Schedule: Going to bed and waking up at the same time every day can help regulate your body’s natural rhythms.
Diet and Exercise: A healthy lifestyle can reduce fatigue and improve overall well-being.
Support System: Educating friends, family, and coworkers about narcolepsy can help them understand your condition and offer support.
Narcolepsy is often misunderstood, but it is a real and serious disorder. Recognizing the symptoms and seeking medical advice is the first step toward better management. You are not alone in this, and with the right strategies, you can improve your quality of life.
Conclusion
This month it will be thirteen years since I lost my son, not a day goes by that I do not think about him. He had narcolepsy, but that was not his demise. He had a seizure while driving, and in an instant, he was gone. Time has passed, but I often think of how he fought against more than just his physical diagnoses—how he battled the darkness inside, and how hard it was to watch him struggle.
It is hard to put into words what that kind of loss feels like, but if there is one thing he would want, it is for people to laugh. He had a sharp wit and never missed a chance to make a joke, even about his own struggles. So, in memory of my son, here are a few lines I think he would have loved—because if he could find humor in it, so can we. This is where he would provide either a drumroll 🥁 or an eyeroll 🙄 or both!
Narcolepsy prepared him for the afterlife—he was practicing for eternal rest.
If there is an afterlife, he probably took a nap on arrival.
Death is just the world’s longest sleep study.
He always joked that he could sleep through anything—turns out, he was right.
At least now, he never has to wake up wondering where he is.
He is probably arguing with an angel about why they should let him sleep in.
He spent years battling sleep, and now he has all the time in the world to rest.
Revelation 21:4
"He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away."
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