How Narcolepsy Ruined My Life, Then Gave Me More Courage
Reflections on how a major diagnosis re-arranged everything
I’m 30 years old. I know people don’t usually come outright and say their age, but I think you need to know.
In February of this year, I had a cancer scare. A large nodule on my thyroid sent me to an endocrinologist. After a series of tests, we found out the growth was benign. When I asked why my thyroid had been growing, the doctor said, “Sometimes these things just happen.”
I suspected that healthy organs do not grow twice their regular size for no reason.
I found a functional medicine doctor who revisited the swollen thyroid.
She asked me a series of what seemed like random questions.
Yes, I get dizzy every time I stand up.
Yes, I’m cold all the time.
Yes, I forget words mid-sentence.
Do I have muscle twitches? I don’t know… (the answer turned out to be yes).
Three months, a brain scan, and two sleep tests later, the results were in:
I was reeling. A chronic, incurable, neurological disorder? The truth seemed to change everything, but I’d already been living with this condition for a long, long time.
I’d guess 18 years. And that’s conservative.
I had all the symptoms of Narcolepsy, I just never knew it. And now, at 30, almost two decades after the onset of my condition, I have a name for all those weird things I’ve been living through.
What is Narcolepsy, you ask?
No one I’ve told about my condition knows what it is. It’s okay if you don’t either. The only thing I knew about Narcolepsy before my diagnosis was the image of Rowan Atkinson falling asleep while standing up in the 2001 movie Rat Race.
Narcolepsy is a chronic neurological disorder that interferes with the body’s sleep cycles. Narcolepsy Type 1 includes something called Cataplexy — sudden muscle tone loss when the person has intense emotions (like fear or laughter). I have Type 2, meaning I have Narcolepsy without Cataplexy.
Normal adults have regular cycles of light sleep, REM sleep (dream sleep), and deep sleep throughout the night.
People with Narcolepsy (PWN) have chaotic sleep cycles, where REM sleep shows up at the wrong time. It’s called “REM intrusion”, and it can happen during sleep or during wake times.
I’ve experienced this all my life — vivid dreams all night long (REM showing up during deep sleep), terrifying hallucinations while falling asleep (called hypnogogic hallucinations), and sleep paralysis (paralyzed upon waking up).
I never thought anything of it.
EDS and Sleep Attacks
PWN experience Excessive Daytime Sleepiness (EDS), which is where — you guessed it — we are excessively sleepy during the day.
Imagine staying up a full 72 hours — three days. You’re so tired you can’t think. You’re irritable. Your eyes can’t even stay open, and all you can think about is laying down somewhere — anywhere — to go back to sleep.
That is was EDS feels like. The severity varies from person to person, but it’s a daily occurrence for all PWN.
Insomnia is another symptom of Narcolepsy. Yes, ironic. We are desperately tired all day long, and then struggle to fall asleep at night.
Sleep attacks are what happen when the brain is so worn out and hungry for sleep that it shuts down. And it’s scary. Imagine yourself unexpectedly losing consciousness while going about daily life.
I’ve never noticed my sleep attacks because I don’t lose consciousness, but there are times during the day when a part of my brain does turn off momentarily. A brain scan revealed that my brain goes into deep sleep while I am conscious. When my brain realizes it’s asleep, it freaks out and comes back into high alert. My heart rate spikes and my body floods with stress hormones. And it’s been doing this over, and over, and over, every day, for at least 18 years.
I had no idea.
Chronic Stress and Deep Sleep
We all know that chronic stress is a killer.
Chronic stress can disrupt all the body’s systems: cardiac, digestion, hormones, and mental health. We all know we need to manage our stress to avoid long-term health problems.
But for me, the chronic stress I experienced was biologically induced. There was nothing I could have changed about my mindset or my lifestyle to help with the high level of cortisol flooding my system every day. My brain was doing it all by itself.
The scariest consequence of having undiagnosed Narcolepsy for almost 2 decades is how much deep sleep I have lost. PWN don’t experience the 1–2 hours of deep sleep we need each night.
Deep sleep is where your brain organizes learning, consolidates memories, and restores body systems like hormones, metabolism, and immune function. Chronic lack of deep sleep can disrupt all these things, and if it’s ongoing enough, the damage can be permanent.
My thyroid nodule? Lack of sleep.
My memory loss (both long-term and short-term memory)? Lack of sleep.
My retinal degeneration, requiring laser eye surgery? Probably from lack of sleep too.
I’ve had so many issues in my life that I’ve traced back to this condition. It’s a mixed bag of feelings to know there’s a single reason for most of the physical and emotional problems you’ve ever had.
Reckoning with Narcolepsy
I get to re-write my past.
I have sudden bursts of understanding now about why my life always seemed so hard. It’s because it was!
I was a good student in high school but struggled to stay awake in class. I had depression and anxiety and struggled with suicidal thoughts. I had the same problems in college, too. When I graduated and worked full time, I remember feeling ragged all the time. For all those years I had a looming fear that the rest of my life would feel this hard.
Then I had children. I had always wanted to be a mom and envisioned that time as special and deeply fulfilling.
Instead, I struggled to survive and had regular emotional breakdowns. I felt psychotic. I thought that maybe I was, and tried to find a counselor to help me.
While I noticed some improvement, no amount of lifestyle changes would ever really change how I experienced life. I started to feel really, really hopeless.
Knowing why daily life was so hard for me has helped me re-write my story.
All those times I struggled, I blamed myself for being lazy, unmotivated, and incapable. Maybe I’ll never be happy, I thought. I became a workaholic to compensate for my self-condemnation. I thought something was wrong with me.
Now I know something was wrong with me, but it isn’t a character flaw. It’s a neurological condition, and I’m relieved.
I have to re-write my future.
Another way I coped with my Narcolepsy symptoms was to daydream about how my future would be.
And it was going to be badass.
- I would be a successful writer turned motivational speaker!
- I would become an expert in the Education world and transform the system!
- Maybe one day, I would hack the system and finally wake up rested!
But now I know that my future will include a chronic sleep disorder with no cure. I will, to some extent, always have to measure my life by how much energy I will have to fulfill it.
And this one is a real kicker. Many of my hopes and dreams crashed against the rocks of reality with this diagnosis. I have yet to rebuild them. I know some of my dreams might still be possible, but I am currently grieving the ones that will never be.
I need to re-write my present.
For now, I’m learning what it means to have Narcolepsy. I have ignored or denied a lot of my symptoms for a very long time. I can’t do that anymore.
I have to rest. I have to slow down. Some things I have to stop.
I have to confront my own judgment and self-hatred. I was afraid I was worthless. That I would never succeed. That I’m less of a human for being capable of less. I’ve lived almost two decades hiding my disability from myself and others.
So far, being honest about my ability (or lack of it) has been hard. I notice that I push myself without mercy because I’ve always done it. It’s hard to break up with workaholism.
At the same time, I give up on things easily because hard things always felt impossible. If daily life is hard, how could I possibly do something beyond that? Something that might require more of me than I might be able to give?
Being more connected to reality means I have to do the hard stuff in a way that isn’t going to kill me. I have to stay committed and show up when things do feel hard and believe that even if I do it slow and small, it still matters…
…Which is why I’m here, writing this article.
To learn more about Narcolepsy, check out these resources:
- Narcolepsy Network — A national patient support organization focused on education and support.
- Know Narcolepsy — Providing a valuable online resource for people living with narcolepsy and their healthcare providers.
- Project Sleep — A non-profit organization dedicated to raising awareness about sleep health and sleep disorders.