I Have Narcolepsy: I'm Done Explaining

There is a clear line that divides my life: before my Narcolepsy diagnosis and after it. And honestly, sometimes I don’t even know which one was worse.

Blaming Myself for Being Exhausted

Before my diagnosis, I spent years thinking my exhaustion was my fault. That maybe I was just tired. That I wasn’t trying hard enough. That I wasn’t built for this world the way other people were. It didn’t help that I was already dealing with complex PTSD from childhood trauma. My family was a mess—rageful father, dramatic mother, infidelity, emotional and sometimes physical abuse. I tried to fight back, and for that, I was scapegoated. I called out the dysfunction, and in return, I was blamed for everything. Looking back now, many of those symptoms were early signs of an undiagnosed sleep disorder.

Leaving Toxicity Behind

By the time I finally cut ties, I thought I’d be free. And in some ways, I was. My GERD disappeared. As for my sinusitis—which doctors said would require regular procedures every few years—it vanished after my first and only surgery. Eventually, my career stabilized. I built financial independence. Leaving was the best thing I ever did for my health.

Except my sleep didn’t get better. If anything, it got worse.

When It Got Worse

I remember when everything really exploded. Around the age of 30, the usual brain fog—something I had always assumed was depression or just tiredness—turned into something far more terrifying. That’s when I started collapsing. Not just once, but over and over. My body refused to stay awake. At the time, I didn’t realize I was showing classic signs of a neurological sleep disorder.

I went from doctor to doctor: GP, internist, cardiologist, neurologist. More appointments than I could count. Tests. Scans. Bloodwork. The same cycle every time—confusion, dismissal, vague guesses. And then, finally, a neurologist suggested I see a sleep specialist.

A Reluctant Step Toward Answers

I hesitated. I was already exhausted from two straight months of constant medical visits, only to be told nothing was wrong. What if this was just another dead end? But the collapses kept happening. My body kept shutting down, and I had no control over it. So a few months later, I gave in and went.

That’s when everything changed.

Finally: A Name for My Suffering—Narcolepsy

The sleep doctor immediately pre-diagnosed me with narcolepsy. The word swirled in my mind. What is that? I scheduled a sleep study. And finally, after what felt like years of screaming into the void, I had an answer: narcolepsy type 1.

I thought having a diagnosis would make things easier.

It didn’t.

The Diagnosis Didn't Fix Anything

People around me didn’t change just because I finally had a name for what was happening. People didn’t become more understanding. They didn’t offer more patience. They didn’t try to learn. Even my partner, someone who should have been my biggest support—could barely make a half-hearted effort to understand.

Instead, I was whispered about. Labeled as distant and difficult—just like before, and now even after my diagnosis. While I was in the middle of grief, agony, and frustration trying to understand my condition, people talked behind my back. They said I was different, that I’d changed. And you know what? They were right.

I had changed. Because I was done pretending I was okay.

Surviving in Silence

For a decade—maybe more—I suffered without knowing why. Since my first hypersomnia onset in college, I lived without sufficient medication. Still, I tried so hard to function like everyone else, forcing myself to keep up. In the midst of daily brain fog and sleep attacks, I pushed myself to work and take care of myself. But the truth is, I was never okay. I was just pushing through—barely surviving.

And now? I don’t have the energy to pretend anymore.

What Narcolepsy Really Feels Like

I have narcolepsy. The fatigue is constant, bone-deep. The brain fog makes thinking feel like wading through quicksand. I feel like I’m constantly in between—"in here" and "out there." A sleep attack isn’t just “feeling tired.” It’s like being drugged against your will—your body shutting down while your mind screams to stay awake.

My sleep is a mess: fragmented, unrefreshing. I wear earplugs, blackout masks, do everything I can—and still, my sleep is never enough. The hypersomnia drowns me. It’s waking up after a full night’s sleep only to feel like you never slept at all. It’s knowing that no matter how much you rest, it will never be enough. The cataplexy steals my body from me.

They Have No Idea

And yet, people still have the audacity to tell me I’m exaggerating. That I should just “push through it.” That I’m using narcolepsy as an excuse—as a privilege. That I must be “okay” enough because I can still push through work and keep up with daily life—even build a small career. If only they understood: I push through because I have to. Because that’s what keeps me alive. It’s not privilege. It’s survival.

When I got my diagnosis, my country barely acknowledged sleep disorders. My narcolepsy medication is off-label, and I have to constantly manage the dosage and side effects myself.

They have no idea.

Tired of Proving My Pain

So the moment I realized the people who should understand me were instead labeling me as difficult or privileged, or accusing me of making excuses—I stopped meeting them. I just... stopped. There was a time when I tried explaining, fighting for understanding, and advocating for myself again and again, hoping to make people see. But now, I’ve stopped.

Just please—narcolepsy is not a privilege.

No More Explaining

And I’ve learned something important: people who genuinely care don’t need a lecture to understand. Kindness doesn’t require a speech. I don’t need to justify my exhaustion for them to believe me. They simply understand. They show up. They’re kind. They offer empathy. And because of them, I feel more able to reciprocate—to them, to myself, and to others who are suffering, too.

As for the ones who don’t care? No explanation will ever be enough for them. So I don’t explain anymore. I don’t argue. I don’t try to convince anyone.

No More Fighting, Only Acceptance

I stopped explaining and let my symptoms speak for themselves. People witnessed a sleep attack firsthand. They saw what it truly looks like when my body betrays me.

It took me years to get here. Years of grief, shame, and frustration. Years of feeling like I had to fight for every ounce of understanding. But I’m done fighting. I’m starting to accept and embrace my condition.

I have narcolepsy.

And I have every permission to rest.