Living with a condition like Narcolepsy -or any chronic sleep disorder – means navigating a life that’s rarely understood, often questioned, and routinely minimized. These conditions are invisible to others but all-consuming to those who live them. And that invisibility leads not just to misunderstanding, but to a quiet erasure of legitimacy, agency, and respect.
Below is a breakdown of how and why this happens – socially, culturally, and even within the very systems meant to support those affected.
Everyone Thinks They Understand Sleep
Because sleep is something every person experiences, people default to comparing your condition to their own fatigue or insomnia. This creates an instant minimization – even if it’s unintentional.
- “I’m tired too.”
- “I get sleepy in the afternoon sometimes.”
- “You just need better sleep hygiene.”
This comparison erases the severity and neurological nature of sleep disorders like Narcolepsy, Idiopathic Hypersomnia, and others. People assume they get it – when in reality, they don’t even come close.
Curiosity Masks Doubt
After disclosure, people often get curious – but not in a helpful way. They ask probing or repetitive questions that reveal deep doubt about your credibility.
- “So… do you just fall asleep standing up?”
- “How do you even function like that?”
- “Are you sure it’s not just stress?”
Even when masked as interest, this kind of questioning implies disbelief, reinforces isolation, and signals that your lived experience is up for debate.
Social Distance After Disclosure
Once someone learns you have a sleep disorder, interactions often change. People become less engaged, more hesitant, or overly performative in how they “accommodate” you.
- Invitations slow down.
- Conversations stay surface-level.
- You’re treated more like a fragile exception than a full person.
This shift isn’t always overt, but it’s deeply felt. Disclosure becomes a dividing line – not because you’ve changed, but because their perception of you has.
Chronic Conditions Don’t Fit the “Inspiration” Mold
Society knows how to handle recovery stories. It struggles with conditions that are permanent, incurable, or don’t follow an upward trajectory.
- You’re not getting better.
- You’re not “beating” anything.
- You’re adapting, living, existing – and that unsettles people.
Instead of admiration, you often get avoidance, pity, or discomfort. Chronic sleep disorders challenge the cultural addiction to heroic transformation.
Ableism in Nice Packaging
There is a social hierarchy of which conditions are seen as legitimate. Sleep disorders tend to rank low – seen as quirky, exaggerated, or psychosomatic.
- You’re often viewed as lazy or unreliable.
- Your symptoms are mistaken for personality flaws.
- Respect is conditional – easily revoked when you’re “too much” or “too tired again.”
Even polite people, even well-meaning ones, can reinforce this bias by downplaying, doubting, or distancing themselves from your reality.
The Medical Gatekeeping Problem
Efforts to raise awareness often run through nonprofit organizations and medical professionals. But too often, these systems are tightly aligned with pharmaceutical interests and rigid clinical frameworks.
- Lived experience is valued only when it reinforces existing medical narratives.
- Independent voices are rarely elevated unless they fit the mold.
- Insight that challenges the status quo – especially around non-medicated coping or nuanced symptom breakdown – is often ignored or sidelined.
This resistance doesn’t just affect advocacy. It trickles down into how society views sleep disorders: as solvable, simple, or suspect.
Living in the Tension
To live with a chronic, invisible condition – especially one as misunderstood as Narcolepsy – is to live inside contradiction. You are expected to advocate, but not too loudly. Speak up, but not in ways that challenge institutional norms. Be inspirational, but also invisible when your reality makes people uncomfortable.
And through it all, you’re just trying to live truthfully. To be taken seriously. To be heard.
This is not about blame. It’s about recognition.
Until we name these patterns, we can’t challenge them. And until we challenge them, people with chronic sleep disorders will continue to be marginalized – even within the very spaces designed to support them.
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Disclaimer: The information provided in this article is intended for informational and educational purposes only. Seek a qualified medical professional with expertise in Narcolepsy for diagnosis or treatment. I am not a medical professional.
Created by: Solomon Briggs
(aka Narcoplexic)
May 24th, 2025
Invisibly Ill, Invisibly Diminished: The Reality of Not Being Taken Seriously with a Sleep Disorder © 2025 by Solomon Briggs is licensed under Creative Commons Attribution-NonCommercial 4.0 International
To view a copy of this license, visit https://creativecommons.org/licenses/by-nc/4.0/
“You may use this tool for non-commercial purposes, but must credit Solomon Briggs.”
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