For over 25 years, I’ve encountered a handful of people telling me not to “associate” with my disease, as if acknowledging my reality is somehow a weakness. These interactions linger, not because I let them define me, but because they illuminate a broader issue—people’s inability to see beyond their own experiences.
Living with Narcolepsy and other sleep disorders means constant calculation. I have to be multiple steps ahead – anticipating how interactions will unfold, preparing for long days, determining who I’ll be around and what I’ll engage in. Most people walk through life effortlessly, without giving much thought to the invisible battles others face. But for me, difficulties are inevitable, layered, and often misunderstood.
When I try to explain – not as an excuse, but to break down why something may be particularly hard – it’s frustrating to be pigeonholed. To be dismissed as weak, lazy, anxious, or whatever label people decide fits their view. The reality is, these people already know I have Narcolepsy, yet refuse to see sleep as anything beyond their own experience of it.
As an advocate for Narcolepsy, I work to bridge the gaps between medical terminology and lived experience, raising awareness about what it means to truly navigate life with sleep disorders. I can handle misconceptions, but I have to adjust my openness around those who insist that identifying with my condition is somehow limiting. I have to change how I speak, how I act, how much I reveal. It’s exhausting. It’s frustrating. And while I recognize not all of these comments are meant to hurt, they still do.
A longtime friend’s father recently messaged me, congratulating me for changing my Facebook name from “Narcoplexic” to my legal name. He said, “It seems to me that you are no longer defining yourself by your disability. You are so much more than that!” I know he meant it as encouragement, but it unsettled me. Defining myself by Narcolepsy was never the goal—it has always been about advocating, explaining, and bringing understanding to something that is so frequently dismissed.
Invisible illnesses, especially Narcolepsy, are treated as jokes, as punchlines, as exaggerated excuses. They are misunderstood, downplayed, disregarded. And frankly, it’s beyond exhausting.
Just today, a friend texted me about skating. I told him I was planning to go for a walk and look for an owl I’d been spotting at a trail. He replied, “Good, I haven’t slept enough the last two nights. I should do something, but I’m secretly hoping to be a turd so I’m gonna turd.” The only way I could interpret that was that “being a turd” meant staying in bed. Two nights of poor sleep? I’ve gone 8,900+ days without real, restorative sleep. It’s been over 25 years since I had two consecutive good nights. I remember waking up feeling refreshed before I turned 20—before Cataplexy became severe and persistent.
At the end of the day, I don’t know if people will ever fully understand. I don’t expect them to, but I do wish for a little more willingness to listen, to not judge, to show some curiosity instead of jumping to assumptions. But beyond that, what makes all of this even harder is the burden of honesty – of simply speaking truthfully to my reality. When others can’t handle it, or don’t want to hear it, it feels unfair. To be forced to soften my truth, to alter my honesty just to avoid making someone uncomfortable or to keep them from having to acknowledge something they’d rather ignore, is painful.
Instead, I have to brace myself for dismissive remarks, shallow interpretations, and outright insulting statements. And that means I have to stay flexible – to keep bending, dodging, and maneuvering around people’s perceptions just to preserve my energy, to remain in balance, to avoid being drained by someone else’s shallow-sighted response, and to not let their limited understanding dictate how I carry myself.
Because, unlike them, I don’t have the luxury of just pushing through.
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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
The Cost of Honesty: When Speaking Truth Makes Others Uncomfortable © 2025 by Solomon Briggs is licensed under CC BY-NC 4.0
To view a copy of this license, visit https://creativecommons.org/licenses/by-nc/4.0/
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