Narcolepsy - The Most Underrated Mental Health Killer - NAMI CCNS - Chicagoland Mental Health

Narcolepsy – The Most Underrated Mental Health Killer

Narcolepsy is one of the most commonly misunderstood health disorders. This neurological autoimmune disorder can affect people in varying ways and is often extremely difficult to diagnose. Here are 5 things that most people need to know about narcolepsy and how it affects those patients and their loved ones.

It Doesn’t Mean What You Think It Means

Narcolepsy is often the punchline for many jokes because people think that it is a laughing matter due to all of the general misconceptions about the disorder. The media has a tendency to portray narcolepsy as a joke and this means that many people do not take the condition seriously. Common symptoms of narcolepsy include extreme exhaustion, sleep paralysis, and disruptive sleep-wake cycles. People with narcolepsy may experience significant disruptions in their daily routines that make it difficult to lead a normal life. While the exact cause of narcolepsy is unknown, knowing all of the facts about the disorder can help you to understand how to best treat the issue.

What is Narcolepsy?


Narcolepsy is a rare neurological condition that affects the brain’s ability to regulate a normal sleep-wake cycle.

Essentially, sufferers don’t have an inbuilt body clock.

Narcolepsy affects an estimated 1 in every 2,000 people in the United States. That’s 200,000 Americans and approximately 3 million worldwide. It is estimated that only 25% of people who have narcolepsy have been diagnosed and are receiving treatment.

Although it’s usually thought of as a sleeping disorder, it’s now thought of as an auto-immune disorder, caused by the destruction of certain cells within the brain by the body’s own immune system.

There are four main symptoms of it:

  • Excessive daytime sleepiness: falling asleep at inappropriate times throughout the day, or experiencing chronic sleepiness.
  • Cataplexy: involuntary muscle weakness in response to emotions – attacks can be anything from mild facial weakness to the knees buckling and the body collapsing. A third of all narcoleptics don’t have cataplexy.
  • Sleep paralysis: the inability to move while being conscious, either when falling asleep or waking up from it.
  • Hypnagogic hallucinations: vivid dream-like experiences.

Source:  Narcolepsy UK 

What Causes Narcolepsy?

What causes narcolepsy?

It Impacts Pretty Much Every Aspect of Life

In addition to the quality of their sleep, people with narcolepsy see effects that stretch far beyond the issue of fatigue. Tasks such as driving become increasingly dangerous, with the risk of becoming involved in an accident tripling for those who drive fatigued compared to those who feel rested. Patients may also realize that their personal relationships are suffering as a result of narcolepsy. Getting in touch with a support group can make a world of difference for those that experience this crippling disorder.

People with narcolepsy often have another accompanying mental health problem called depression!  Narcolepsy impacts REM sleep and creates havoc on a person’s normal sleeping patterns, thus leading to other mental health issues that include depression.

Narcolepsy is also linked to an increased risk of developing depression. This could be because narcolepsy symptoms can be stressful and isolating, especially without proper treatment. … Other sleep disorders can accompany narcolepsy, such as REM sleep behavior disorder, sleepwalking, and sleep apnea. – National Sleep Foundation

I Can’t Stop Falling Asleep | Living Differently – Belle Hutt

In the case of 25-year-old, Belle Hutt, narcolepsy has pushed her to the brink of “not wanting to live” in the past. Through her sadness and depression, she tells her story in this compelling video of life, love and living with and overcoming narcolepsy.

There Is No Cure

Unfortunately, there is no cure for narcolepsy. Instead, sufferers of this disorder must rely on treatment options that only help to manage the symptoms. There are various lifestyle changes like Belle Hutt has made, that can help to mitigate the effects of the disorder. People suffering from narcolepsy can try to mold their day around when symptoms typically hinder them. They can also be candid with those around them so that others are aware and more understanding of their condition.  Excercise is, most often, a great way to combat almost all mental health conditions.

As with all medical conditions, knowledge is power. Before you make assumptions about a condition, be sure to pool as much information together as you can. Developing a greater understanding of narcolepsy will help sufferers to get the help that they need and their loved ones will be able to more effectively provide support.

For more information about sleep disorders, read here!


  1. Reply
    Iris Erielle Foss says:

    It’s like a random dose of anesthesia tht comes upon me & I’m out like a light. When I’m in public .ost people assume tht zIm high or drunk. It’s devastating!

  2. Reply
    Maya says:

    I got diagnosed with mild narcolepsy after my first year in University, but that whole year was so impossible!! I’d have to explain to my teachers that I wasn’t sleeping in their class because I was bored or sleepless, but that I simply couldn’t stay awake. In my high school and community college years, some teachers would even call me out in front of the class and people would laugh but I felt like crying. :/
    Can’t even read a page of a book before I start passing out, but I’m so glad I have meds to help me stay awake now, it’s been life-changing for years!! I can’t imagine if I hadn’t gotten diagnosed in college, I might have fallen asleep at work meetings, while driving, or worse!

  3. Reply
    SleepyBeauty says:

    I am a 33 year old, African American woman, with narcolepsy and cataplexy. You have no idea how it feels to be living with such a crippling disorder until you walk a few steps in my shoes.
    Imagine not being properly diagnosed in the first place, and then after you finally get diagnosed. You’re not properly treated because the side effects of the medication are causing you severe migraines and brain fog. Not to mention, getting covid made things worst.
    Proper testing and research is much needed for narcolepsy. This crippling neurological disorder causes major functional deterioration.

  4. Reply
    Katie says:

    I have narcolepsy. I got diagnosed finally at age 35. I’ve lost multiple jobs bc of this. I’ve been trying to get disability for 3 years now. Narcolepsy should be considered a disability it takes control of every part of your life

    • Reply
      Zecharia Gilbert says:

      Katie, thank you for your comment! What resources have you engaged with that have assisted you so far?

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