Advocacy is complicated. It’s rewarding, frustrating, necessary, and often – deeply limiting.
Over the years, I’ve interacted with nonprofits, attended numerous conferences, and spoken directly with top researchers in the field of sleep medicine. I’ve witnessed firsthand how advocacy efforts shape awareness, how messaging spreads, and how conversations about Narcolepsy and other sleep disorders are presented to the world. But there’s a persistent issue that continues to nag at me: the language we use is far too simplified, and the way advocacy operates often feels too controlled.
When nonprofits push awareness campaigns, the messaging is coordinated, filtered, and polished – but at times, it feels like something is missing. The raw, unfiltered reality of living with Narcolepsy, especially with severe Cataplexy, gets boiled down into digestible phrases that don’t truly capture the experience. The disconnect between clinical terminology and lived experience is vast, and despite all the awareness efforts, the narratives still feel incomplete.
I’ve seen this play out time and time again. Advocacy often revolves around medications – discussions lead back to treatment options, pharmaceutical developments, and the promise of new drugs. That’s not necessarily wrong, but for me, the messaging isn’t enough because medications have never been beneficial in my case. What about those of us for whom medicine doesn’t work? What about the lifestyle adjustments, the adaptations, the way we learn to navigate our days without relying on a prescription? This part of the discussion is often skipped over, left in the background, or simply disregarded.
It’s also a challenge when stepping into the advocacy space as an independent voice. I’ve spent years immersed in research, developing resources, and articulating concepts beyond the oversimplified language commonly used. My Narcolepsy Symptom Severity Range Tool (NSSRT) is an example of this – a document dissecting symptoms beyond what most existing frameworks provide. I want doctors, advocates, and nonprofits to use it, but I also hope they recognize its depth and give proper credit when they do.
Yet, while I believe in my work, I hesitate to fully align myself with any single nonprofit or organization. If I attach myself too closely, I lose the ability to speak as freely, openly, and bluntly as I do now. I know how advocacy works – it’s strategic, careful, and often shaped by financial and institutional backing. That’s not inherently wrong, but it does mean certain conversations get silenced, certain perspectives get overlooked, and certain voices struggle to be heard.
At the upcoming Hypersomnia Foundation ‘Beyond Sleepy’ Conference and American Association of Sleep Medicine ‘SLEEP’ Meeting, I hope to engage with top researchers, share my work, and push for deeper discussions. I’m bringing copies of my one-pager and the NSSRT, looking for meaningful interactions and hoping to spark conversations that go beyond the surface-level explanations we’ve been given for decades.
I don’t want to attack any individual advocate, nonprofit, or doctor. But I do want to challenge the way we frame these conversations. The way symptoms are discussed. The way awareness is spread. The way gaps in understanding continue to persist, not because people aren’t trying, but because the language hasn’t evolved enough to capture the full picture.
Advocacy isn’t just about visibility – it’s about breaking through the noise and actually making an impact. That’s what I hope to do, even if it means standing apart from the standard messaging, even if it means speaking truths that others may not be ready to hear.
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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
Breaking Through the Noise: The Struggles of Advocacy in the Narcolepsy Space © 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/
“You may use this tool for non-commercial purposes, but must credit Solomon Briggs.”
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