Advocacy is complicated.
Drawing on my extensive experience, I’ve had the privilege of engaging with nonprofits, attending numerous conferences, and speaking directly with leading researchers in the field of sleep medicine. Through these interactions, I’ve observed firsthand how advocacy shapes awareness, spreads messaging, and frames conversations about Narcolepsy and other sleep disorders. While I deeply appreciate these efforts, a persistent concern for me is that the language often feels too simplified, and the way advocacy operates can sometimes seem overly controlled.
My observations have led me to believe there are several areas where our collective dialogue could evolve to be more comprehensive and inclusive:
Broadening the Narrative Beyond Simplification: I’ve noticed that while awareness campaigns are often coordinated and polished, they sometimes present a simplified view of the lived experience with conditions like Narcolepsy, particularly when severe Cataplexy is involved. The rich, unfiltered reality of these experiences can be distilled into readily digestible phrases that may not truly capture their profound depth, leading to narratives that still feel incomplete. This highlights a significant disconnect between clinical terminology and personal experience, which I believe offers an opportunity for more nuanced storytelling.
Expanding the Focus Beyond Medication-Centric Discussions: Advocacy discussions frequently revolve around medications, pharmaceutical developments, and various treatment options. While acknowledging the importance of this focus, for individuals like myself, for whom medications have not yielded beneficial outcomes, this messaging can feel insufficient or incomplete. I believe there is a valuable opportunity to give greater emphasis to lifestyle adjustments, personal adaptations, and strategies for navigating daily life without sole reliance on prescriptions. Currently, these aspects often receive less attention or are simply disregarded in the background. A better comprehension of and eventual grasp into the symptoms for each person, individually, can be incredibly beneficial. However, this often doesn’t get presented as a priority, as medications tend to take precedence. Understanding that the funding and events even revolve around such a focus just makes it disheartening and somewhat frustrating, knowing that there’s more that could be of real help if it were presented in a deeper and more upfront manner.
Fostering an Inclusive Space for Independent Voices: As an independent voice, I’ve invested years in research, developing resources, and articulating concepts that aim to go beyond commonly oversimplified language. My Narcolepsy Symptom Severity Range Tool (NSSRT) is an example of this work, designed to dissect symptoms more deeply than most existing frameworks provide. I genuinely hope that doctors, advocates, and nonprofits will find this work useful and recognize its depth appropriately. However, I also feel a hesitancy to formally align too closely with any single nonprofit or organization. For now still I believe that maintaining an independent voice allows for the most direct, free, and open expression of ideas. While recognizing that advocacy is inherently strategic and often influenced by financial and institutional support, I’ve observed that this structure can sometimes mean that certain important conversations might not receive as much attention, diverse perspectives might not be fully explored, and some voices could find it challenging to gain prominence.
It’s important for me to clarify that my intention is not to criticize any individual advocate, nonprofit, or doctor. Instead, my goal is to encourage an evolution in how these conversations are framed, including the discussion of symptoms and the methods by which awareness is spread. I perceive that persistent gaps in understanding arise not from a lack of effort, but because the language used has not yet fully evolved to capture the complete picture, and the focus has seemed to really skip over, and/or just miss, what are big aspects of the human experience. My aim is to make a genuine impact beyond mere visibility. This commitment drives my desire to contribute unique insights, even if they diverge from established messaging, in hopes of fostering a more comprehensive understanding of sleep disorders.
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.
Spanish/Espanol translation by Solomon Briggs
Japanese/ソロモン・ブリッグスによる日本語訳
Created by: Solomon Briggs
(aka Narcoplexic)
May 24th, 2025
Revised – July 1st, 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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