Dec 15 2025
Surviving the Holidays with Narcolepsy: Boundaries, Self-Preservation and Finding Joy

Written by Tasha Hill, RN

The holidays are marketed as a magical glittering marathon of joy, togetherness and endless energy. For people with Narcolepsy, that script may not be just unrealistic, but laughable and stressful. Well, laughable until it triggers cataplexy, and then it’s a little less funny. We’re expected to juggle parties, travel, late nights and family traditions while managing a neurological disorder that affects how our brains regulate sleep. Much to our chagrin—and often the disappointment of others—we simply can’t. It isn’t laziness. It’s biology. 

The Science Behind the Struggle 

Narcolepsy is a lifelong disorder of the central nervous system, characterized by the brain’s inability to control sleep-wake cycles. It affects about one in 2000 people worldwide. Symptoms include, but are not limited to, excessive daytime sleepiness (EDS), disrupted nighttime sleep or fragmented sleep, cataplexy, hallucinations and sleep paralysis. Even with treatment, 80% of patients report persistent sleepiness.  

The psychological toll is equally heavy. Depression affects up to 57% of people with Narcolepsy. Anxiety is also common, with studies confirming strong associations between Narcolepsy and anxiety disorders. The holiday season itself spikes levels of worry—nearly nine in 10 adults say something causes them stress during the holidays, according to the American Psychological Association. Add Narcolepsy to that mix, and you’ve got a recipe for exhaustion, guilt and dread. 

Narcolepsy doesn’t just affect sleep. It impacts relationships, social participation and overall quality of life. Research highlights that Narcolepsy is frequently misdiagnosed as depression or anxiety, underscoring how deeply intertwined the condition is with mental health. Recognizing this overlap is crucial: it’s not a weakness to feel overwhelmed—it’s a valid response to our neurological reality. 

The Emotional Reality 

Here’s the part that rarely makes it into those magical holiday ads: 

• Guilt when we decline invitations or leave early 

• Anxiety about sleep attacks or cataplexy episodes triggered by laughter, excitement or stress 

• Isolation when traditions assume stamina we simply don’t have 

The holidays amplify these challenges. We’re told or silently expected to “push through” or “just rally” as if Narcolepsy were a matter of willpower. It isn’t. We’ve tried that already, and it failed. At the end of every gathering, party or get-together, those of us with Narcolepsy are left with the physical and psychological consequences of our choices. We don’t get to bounce back the next morning like many of our loved ones. We live with a chronic condition that demands respect, even when the world around us doesn’t provide it.

Connecting with support groups or counseling services can help provide understanding and reduce feelings of anxiety, guilt and isolation. Educating family and friends about Narcolepsy fosters a supportive network. Open communication about challenges strengthens relationships. 

Boundaries: The Ultimate Holiday Gift 

Boundaries aren’t selfish. They’re necessary for survival. Evidence-based strategies emphasize structured routines, scheduled naps and lifestyle adjustments. During the holidays, that means: 

• Limiting commitments: Decide how many events you can realistically attend and prioritize the ones that are most important to you. 

• Communicating clearly: Explain Narcolepsy in simple terms—“my brain doesn’t regulate sleep like yours,” or “my medical condition doesn’t afford me the luxury of unlimited energy.” 

• Offering alternatives: Suggest shorter activities that allow meaningful participation during your best, more alert time of day. 

Boundaries protect not only our health and sanity, but also our relationships. Overextending leads to resentment and burnout—which results in a most unenjoyable holiday experience. 

Having the Hard Conversations 

When loved ones seem disappointed, here’s an example of a script to follow: 

• Validate feelings: “I know you were looking forward to this” 

• State your reality: “Narcolepsy makes it impossible for me to push past my limits without paying a steep physical penalty” 

• Offer compromise: “I can’t do the late-night party, but I’d love to do lunch” 

Framing boundaries as respect—rather than rejection—helps others understand that honoring limitations is an act of self-care, not avoidance. 

Reframing the Season 

The holidays don’t have to be about doing everything. They can be about savoring what matters most. Research shows that self-care and lifestyle management improve functioning and quality of life in Narcolepsy. That means prioritizing the things that will truly bring us the most joy, planning recovery days and letting go of guilt. 

Because here’s the truth: the holidays should not be a test of endurance. For us, they are an opportunity to practice radical self-respect, educate those around us and reclaim joy on our own terms.

 Dry Humor and a Touch of Sarcasm Meets Reality 

Let’s be clear. Narcolepsy doesn’t care that it’s Christmas Eve. It doesn’t care that your cousin flew in from three states away. It doesn’t care that the party starts at 9 p.m. and runs until midnight. Narcolepsy is the uninvited guest who tags along no matter where we go or what we do, demanding naps, springing unexpected sleep attacks, disrupting sleep and possibly dropping you to the floor with cataplexy. 

So yes, we may leave early. We may decline altogether. We may need to nap in the middle of the festivities—voluntarily or totally unexpectedly and involuntarily. That’s not us being antisocial. That’s us surviving. And honestly, we don’t really want to be the spectacle that everyone talks about once all the festivities are over. This life is hard enough, we don’t want it to be made worse because we pushed ourselves too hard, trying to fulfill the expectations of others and leaving us with negative holiday vibes rather than the pleasant memories we so desire. 

For Loved Ones 

To those who love us: your empathy is the greatest gift you can give. Not pity, not pressure, but understanding. When you honor our boundaries, you honor our humanity. When you listen without judgment, you remind us we are not invisible, even though our illness largely is. 

Here are some specific ways you can help: 

• Respect boundaries without guilt trips. Trust me, to our spouses or significant others–we already feel guilty knowing that you may be disappointed that you’ll miss out on an event or get-together that you would’ve liked to attend by standing in solidarity with us. To family and friends—we would if we could, but we can’t, so we don’t. 

• Consider recommending flexible options for participation 

• Recognize saying no is not rejection—it’s preservation 

• Listen when we explain our limitations 

The holidays are about connection, not conformity.

For Clinicians and Providers 

To clinicians and providers: the responsibility is heavy, but it is also sacred. Your patients need more than prescriptions. They need to be heard. They need you to see the weight of their reality, not just the list of their symptoms. They need you to help them navigate not only the medical aspects of Narcolepsy but the emotional toll of living in a world that often misunderstands them, and realize the holidays magnify the challenges of living with a chronic neurological disorder even more. 

Too often, patients feel dismissed or unheard when they explain how Narcolepsy impacts their daily lives. Because this isn’t just about sleep and EDS. It’s about dignity, living with the best quality of life possible and protecting their mental health (for everyone’s sake). 

Because at the end of the day, after each family gathering, holiday party or get-together with friends, patients are left with the consequences. They are left still living with Narcolepsy, while most everyone else gets to go on living their medically unencumbered lives. 

Closing Thoughts 

It’s okay to feel guilt, anxiety or sadness. It’s okay to cancel. It’s okay to set boundaries. And it’s more than okay to look forward to the holidays with anticipation instead of dread. 

But let’s go just a bit deeper. For those of us living with Narcolepsy—or any chronic illness—the holidays are not just a calendar of events. They are a gauntlet of choices, each one weighed against the reality of our bodies and minds. Every gathering, every party, every family tradition comes with a cost that others rarely see. When the music fades and the laughter dies down, we are left with the consequences: the bone-deep exhaustion, the mental fog, the anxiety that lingers long after the decorations are packed away. 

This is our lived experience. We carry it into every room, every conversation, every season. And while others may wake up the next morning ready to move on, we wake up still negotiating with a condition that does not take holidays off. That reality deserves recognition. It deserves compassion. It deserves respect. 

And please always remember–you are not alone. Your exhaustion is real. Your anxiety is valid. Your boundaries are worthy of respect. Boundaries aren’t barriers. They’re bridges. Bridges to joy, to connection and to a holiday season that feels like celebration, not survival. You deserve joy without apology.

So this season, let’s reclaim it. Not by doing everything, but by doing what matters most. Not by meeting every expectation, but by honoring our own needs. Not by dreading what’s to come, but by anticipating the moments of joy we can create on our own terms. 

Because Narcolepsy may shape our lives, but it does not define our worth. And even in the midst of limitation, there is room for joy, for connection, for love. That is the gift we give ourselves—and the one we invite others to share. So Happy Holidays! 

For more on this topic, check out the recent WUN webinar “Navigating the Holidays with Narcolepsy.”

Personal Note

Since this is the last blog of 2025, I want to say that it has been most rewarding to write for this community, share knowledge and possibly shed light on some of the lesser known or discussed realities of life with Narcolepsy. But more than that, I hope that through shared experiences I have been able to connect with you, to let you know that you truly are not alone. Though I may not know you, I see you–you are heard and you are understood. You were fearfully and wonderfully made. Never give up, never make yourself smaller to fit in spaces that aren’t worthy of you. Research, educate and advocate for yourself, because you are worth that and so much more. Life may look different for you, living with Narcolepsy but–whisper to the you that you know, carrying this burden, with baggage in tow–though you’re reshaped, and far from free, there’s quiet strength in learning to be. And maybe the you that only you know, will teach you endurance–even if you’re a bit slow.–Tasha Hill, RN– Narcolepsy Type 1 & Chronic Illness Warrior 

References

1. https://my.clevelandclinic.org/health/symptoms/cataplexy
2. World Metrics. (2025, May 1). Narcolepsy Statistics: Market Data Report. Retrieved from https://worldmetrics.org/narcolepsy-statistics/ 
3. https://www.wakeupnarcolepsy.org/wp-content/uploads/2020/01/Ong-et-al-2020-Narcolepsy-HRQoL-Mixed-Methods-Study-IN-PRESS-VERSION.pdf
4. WebMD. (2025, June 24). How Does Narcolepsy Affect Your Mental Health? Retrieved from https://www.webmd.com/sleep-disorders/narcolepsy-and-mental-health 
5. Narcolepsy.Sleep-Disorders.net. . Narcolepsy Misdiagnosis: Overlapping Symptoms of Mental Health Conditions. Retrieved from https://narcolepsy.sleep-disorders.net/living/misdiagnosis-mental-illness
6. American Psychological Association. (2023, November 30). Even a joyous holiday season can cause stress for most Americans. Retrieved from https://www.apa.org/news/press/releases/2023/11/holiday-season-stress
7. Ong, J. C., Fox, R. S., Brower, R. F., Mazurek, S., & Moore, C. (2020). How Does Narcolepsy Impact Health-Related Quality of Life? A Mixed-Methods Study. Behavioral Sleep Medicine. Retrieved from https://www.wakeupnarcolepsy.org/wp-content/uploads/2020/01/Ong-et-al-2020-Narcolepsy-HRQoL-Mixed-Methods-Study-IN-PRESS-VERSION.pdf