Living with Type 1 Narcolepsy has been a profoundly life-altering journey, characterized by an invisible battle that ripples into every aspect of my existence, especially my interactions with the world and others. Diagnosed in my early 30s, after a decade of severe ‘complete’ Cataplexy – a unique and often startling symptom of Type 1 Narcolepsy where laughter could make me melt, or collapse, to the floor – I’ve navigated life with a condition that is frequently misjudged, misunderstood, unrecognized, and that often goes unacknowledged by others. This inherent invisibility has profoundly shaped my interpersonal traits.
The ongoing toll of sleep loss and deprivation feels like a form of torture, a constant, internal struggle that leaves me with an endless daily burden. This deep, personal weight has fostered a significant desire not to burden anyone or to be overly burdened myself. Instead, I find myself driven by a deep-seated need to please others – to be courteous, respectful, honest, and straightforward – because the drama and games people play, even with themselves, are simply too exhausting. There’s a strong desire to be liked, yet an equally firm resolve not to bend myself to fit another’s desire or to be disliked, thought of as anything that I’m actually not. This delicate balance stems from a lifetime of managing an invisible disease, where understanding and acceptance can be rare commodities.
This internal landscape has also influenced my choices in relationships. I actively go out of my way, to avoid drama, finding it exhausting to deal with. The abstract and harsh internal ways that Cataplexy plays with one’s emotions also made the complexities of expressing feelings, flirting, and developing relationships incredibly difficult – for me painful and pretty much impossible. Consequently, I haven’t pursued partner relationships, really since my teenage years. While this might seem unconventional, it has paradoxically granted me a unique freedom. This freedom allows me to delve deeply into my interests, contemplate independently, and think for myself without the constant need for co-thoughts or shared time and space. Like a ‘monk,’ I’ve spent countless time, meditating, reflecting, focusing deeply upon Narcolepsy and my own journey.
These traits are also rooted in the incredible example set by my late mother. She was a super hard worker, dedicated to her family and career, and deeply involved in volunteer work, such as helping develop and eventually presiding over a Sister Cities Organization. Her strength and compassion shaped my own capacity for caring for others, often more than for myself. She was also my rock, uniquely recognizing the real difficulties I faced, seeing me collapsing from Cataplexy when others might not have understood. This unwavering support was vital, especially as I wrestled with not only Type 1 Narcolepsy but also co-morbid conditions like a rare, untreatable Idiopathic Central Apnea matter and Delayed Sleep Phase Onset Syndrome/Disorder – three very difficult, mostly invisible sleep disorders of different categories. Though it is worth adding that Type 1 Narcolepsy is becoming more and more clearly, in the research science, recognized to be a Neurological – brain/hypothalamus – organ-specific autoimmune disease; a reclassification IMHO is due as it would actually help those really suffering by altering the lack of focus and potential actual gravity of it.
Despite an ongoing struggle to make a consistent living – only reaching around $10,000 in a single year twice in my life when I was helping build skateparks – and a denied disability application in my mid-30s, I find purpose in independent advocacy for Narcolepsy and Sleep Disorders. This work that I do out of passion and compassion, through my website, books, and ongoing online presence, has allowed me to reach many people in different ways. For well over a decade, much of this was done online anonymously, and it was there that I received the most thanks – countless messages from people saying I’d helped them in meaningful ways. More recently, my writing and advocacy have begun to gain broader recognition: I’ve been invited to contribute blog posts for nonprofits, interviewed on podcasts, asked to guest speak and co-lead a support group. For me, the true reward is helping others and simply being able to live comfortably, not extravagantly. This passion reflects my ingrained desire to make others thankful and happy, while also helping others perhaps avoid certain invisible puzzles – a quality that, despite the profound challenges of Narcolepsy, continues to guide my path. These recent opportunities give me hope that a sustainable way forward may finally be opening up. Still, the financial walls are really beginning to close in, and the truth is, I’ve spent far more on this work than I’ve ever received in return.
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 version
Japanese/ソロモン・ブリッグスによる日本語訳
Created by: Solomon Briggs
(aka Narcoplexic)
September 6th, 2025 -My late mothers birthday, she’d of been 77, I miss her so much.-
How Narcolepsy + Sleep Disorders Shapes Our Connections and Our Selves © 2025 by Solomon Briggs is licensed under CC BY-NC 4.0
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