Aug 19 2025
Narcolepsy and the Fractured Self: Grieving, Growing and Reclaiming Identity

Written by Tasha Hill, RN

–She is not me–

I am not who I appear to be,

I am not she, she is not me.

I was like wildfire, beautifully untamed–

Quick, unyielding, a bright burning flame.

A mind that took me far, and fast,

Though apparently not one meant to last.

 

That was then, this is now–

I’m still me! I’m just different somehow.

 

As now I drift–unmoored, unseen

Trapped somewhere deep in the in-between.

My face you know, my smile, my wit,

But my fire fades, sputters and spits.

The lights are on, but dim and low,

And sleep comes fast, where thoughts won’t go.

 

The days collapse before they start,

Each passing hour sits heavy in my heart.

I plan, I list, I swear I try!–

Then the thread is lost and I wonder why.

My brain, once agile, now skips and stalls,

Like echoes lost in thunderous falls.

 

Sleep is not rest, it’s a thief in disguise,

With heavy limbs and unblinking eyes.

It takes my mornings, steals my grace,

Leaves dreams half-formed in a vast empty space.

I wake in sand, though I know not how,

I must climb back out to the here and now.

 

I mourn the woman I used to be–

The trails I blazed, the things I’d see.

I had a map, a plan, a light in the dark–

Now I wander with barely a spark.

Not lazy, not weak, not less than you,

Now just tired, in ways I never knew.

 

You may not see the war I fight–

How I wrestle for hours into the night.

How I glue together fractured days,

And try to smile through the disarray.

But this is grief–the living kind,

The loss of self, the fraying mind.

 

Still, I whisper to the woman I know,

Carrying this burden, with baggage in tow–

Though I’m reshaped, and far from free,

There’s quiet strength in learning to be.

And maybe she, who’s not so fast,

Will teach me endurance–even if I’m last.

—Tasha Hill

Narcolepsy is more than a sleep disorder. It’s a quiet thief—stealing time, clarity and often the sense of who we are. For many, the diagnosis brings relief: finally, a name for the exhaustion, the fog, the inexplicable moments of collapse or confusion. But it also ushers in profound grief. Not just for the diagnosis itself, but for the life we imagined, the person we once were and the future we thought we’d have.

This grief is real. And you’re not alone.

The Hidden Toll: Psychological and Cognitive Struggles

Narcolepsy is a lifelong disorder of the central nervous system, characterized by the brain’s inability to control sleep-wake cycles. While excessive daytime sleepiness (EDS) and cataplexy are hallmark symptoms, Narcolepsy’s psychological and cognitive impacts are often overlooked. Studies show that up to 57% of people with Narcolepsy experience depression, and 35% report anxiety disorders, including panic attacks and social phobias. These numbers far exceed those in the general population.

When you see your providers, most often the focus is on minimizing EDS and reducing the incidence or severity of cataplexy. Even on medications, people often still struggle with burdensome cognitive difficulties that go unaddressed.

Cognitively, the challenges are equally disruptive. Research published in Sleep (Oxford Academic) found that over half of people with Narcolepsy report difficulties with attention, memory and executive function, even when medicated. This “brain fog” isn’t just forgetfulness—it’s a daily battle to stay mentally present, to process information and to feel competent.

“I used to be sharp. Now I reread the same paragraph five times and still don’t know what it says;” “I will be mid-sentence and suddenly forget what I was even talking about;” “I have to write everything down, I can’t seem to remember anything anymore”–sound familiar? These struggles can erode self-esteem, strain relationships and make even routine tasks feel insurmountable.

Loss of Self and the Mourning of a Life Imagined

Narcolepsy often begins in adolescence or early adulthood—just as identity is forming. For those of us who started having symptoms and were diagnosed later in life, our identity had already been firmly established. The sudden onset of symptoms can feel like a betrayal by one’s own body. People describe feeling “hijacked,” “disconnected” or “like a stranger in their own skin.”

This experience is known as dissociative grief, a psychological response to chronic illness where individuals mourn the loss of their former selves and the futures they envisioned. It’s disenfranchised grief—pain that society doesn’t always recognize or validate.

“I don’t know who I am anymore,” wrote one contributor on a Narcolepsy forum. “I used to be the person who could do anything. Now I’m the person who cancels plans, forgets appointments, and sleeps through milestones.”

This grief is compounded by the nature of Narcolepsy. Because symptoms aren’t always outwardly visible, others may dismiss the condition or minimize its impact. That invalidation deepens the isolation.

The Evolution of Symptoms Over Time

Narcolepsy is not static. Symptoms evolve, sometimes unpredictably. According to the Mayo Clinic, symptoms often worsen in the first few years and then persist for life. Cognitive and emotional symptoms can intensify, especially under stress, creating a feedback loop that further destabilizes daily life. Sleep fragmentation, hallucinations and automatic behaviors may wax and wane, making it difficult to establish routines or trust one’s own body.

This shifting landscape requires constant adaptation. What worked last year may no longer be effective. Medications may lose efficacy. New symptoms may emerge. And with each change, identity must be renegotiated.

Shared Experience: You Are Not Alone

Despite the isolation Narcolepsy can bring, there is a vibrant, resilient community of individuals living with the condition. Online forums, support groups and advocacy organizations like Wake Up Narcolepsy offer spaces to share stories, vent frustrations and celebrate victories—however small.

Narcolepsy looks different for each of us, but there’s a quiet thread that ties us together–the feeling of being misunderstood, the silent frustration, the grief for the life we thought we’d have. These aren’t just struggles; they’re part of our story. And in sharing them, we find strength. We begin to feel seen, and little by little, we carve out a way back to joy–not the life we had before, but one still worth fighting for.

Reclaiming Identity: Who We Are Now

So how do we move forward? How do we define ourselves in the wake of loss?

It begins with radical self-compassion. Accepting that Narcolepsy is not a character flaw, but a neurological condition. That fatigue is not laziness. That forgetfulness is not carelessness. That needing rest is not a weakness.

It continues with creative expression. Many find healing through writing, art, music or advocacy. These outlets allow for the integration of experience—transforming pain into purpose.

And it flourishes through connection. Whether through therapy, peer support or storytelling, reclaiming identity is a communal act. It’s saying, “This is who I am now. And I am still worthy.”

Tools for Navigating the Journey

Here are a few strategies that may help:

• Journal your grief: Write letters to your past self. Acknowledge the loss. Honor the dreams.
• Track your symptoms: Use apps or notebooks to monitor changes. This can help identify patterns and inform treatment.
• Seek therapy: Cognitive behavioral therapy (CBT) and grief counseling can offer tools for emotional regulation and identity reconstruction.
• Connect with others: Join support groups, attend webinars or follow Narcolepsy advocates on social media.
• Celebrate small wins: Did you make it to an appointment? Cook a meal? Laugh with a friend? That’s resilience.

A New Kind of Strength

Strength isn’t always loud. It doesn’t always look like triumph or resilience in the traditional sense. Sometimes, strength is quiet. It’s the act of waking up and facing another day when your body feels like it’s working against you. It’s showing up—imperfectly, inconsistently, but still showing up.

For people living with Narcolepsy, strength is redefined. It’s not measured in productivity or energy. It’s measured in persistence. In the courage to keep going when your mind is foggy, your muscles betray you and sleep arrives uninvited. It’s the bravery of saying, “I’m still here,” even when the world doesn’t understand what that costs.

This strength is forged in grief. In the mourning of a life that once felt possible. In the ache of watching dreams shift or slip away—not because of a lack of will, but because of biology. It’s the strength of learning to love a body that feels unpredictable. Of forgiving yourself for the things you can’t control. Of finding beauty in the fragments.

I used to think strength meant pushing through no matter what–I mean, that’s what a self-reliant responsible person does, right? But, rationally, I now know that it means being willing to stop pushing, recognizing my limits, accepting that it is not a personal failure when I really can’t do all the things.

It’s the strength of redefining success. Maybe success today is brushing your teeth. Maybe it’s sending one email. Maybe it’s simply surviving the storm of sleep attacks, hallucinations and emotional exhaustion. That is not weakness. That is resilience in its rawest form.

And it’s the strength of connection. Of reaching out when isolation threatens to swallow you. Of sharing your story, even when your voice shakes. Of finding others who say, “Me too,” and realizing you are not alone in this fight.

Narcolepsy may alter the path, but it doesn’t erase the destination. The journey is nonlinear, messy and often painful. But within it lies a different kind of strength—the ability to adapt, to feel deeply and to live authentically. You are still becoming. Still evolving. Still worthy of love, joy and purpose.

This is a new kind of strength. One that doesn’t ask you to be invincible—only to be real. And in that realness, there is power. There is healing. There is hope.

You are not alone in your grief. And you are not alone in your growth.

References:

1. Cano, C. A., Et. al., (2024). Impaired cognition in narcolepsy: Clinical and Neurobiological Perspectives. SLEEP, 47(9).
2. Gitchev, V. (2024, August 22). Narcolepsy & Mental Health: Addressing the psychological impacts. Science 37 Studies.
3. Mayo Foundation for Medical Education and Research. (2024, November 15). Narcolepsy. Mayo Clinic. https://www.mayoclinic.org/diseases-conditions/narcolepsy/symptoms-causes/syc-20375497#:~:text=The%20symptoms%20of%20narcolepsy%20may,up%20to%20a%20few%20minutes.
4. Seed, S. (n.d.). How does narcolepsy affect your mental health? WebMD.

PDF Version