The waking hours of our day-to-day lives, filled with work, school, social gatherings and chores, demand a lot of energy and attention. For those living with narcolepsy, getting good sleep and staying awake make those demands an even greater challenge.
Excessive daytime sleepiness and chaotic dreaming shape the experience of this sleep disorder, as well as battling social perceptions of laziness and jokes in mainstream media portrayals of people falling asleep mid-sentence. The medical field still struggles to recognize and diagnose narcolepsy, meaning it can take years for people with the disorder to understand their symptoms.
Host Anita Rao talks with three people about the experiences navigating a narcolepsy diagnosis. Lauren Thomas is an invisible illness advocate, and Andre Royal Sr. is the founder of the “Suddenly Sleepy” advocacy nonprofit. Jordan, a high school student, also shares his story.
Interview Highlights
Lauren Thomas on hypnagogic hallucinations, a symptom of narcolepsy:
It can happen when I'm washing my hands, when I'm in the shower. … I've definitely had people touch my hand and I come out of it when I was in a full-on dream — but I look, I present like I am awake. … Autonomic behavior is another symptom that's often overlooked, because you can continue doing all of your normal day-to-day activities. And people have no knowledge that you may be stuck in a nightmare. … You can continue doing your behaviors, which is one of the reasons why I no longer drive.
Andre Royal Sr. on navigating new responsibilities and relationship dynamics post-narcolepsy diagnosis:
Being a stay-at-home dad, I mean, as much as I love that time, it wasn't really a welcoming experience. Like, we didn't necessarily plan on it. And so therefore, it really forced us to kind of navigate some terms of our relationship. … And for as much as people talk about unconditional love, well, when you have a condition that you can't help, you find out exactly where the strings are attached, exactly where the expectations realign. And you find yourself having to renegotiate and re-navigate those former relationships, your current relationship and just expectations people have and the expectations you have for yourself. So there's a lot of identity that gets lost. And there's a grieving that takes place, but you have to find a way to, you know — I don't want to say power through it, because usually, it's more than that. … Not everybody has to accept what you're going through, but you have to still go through it. So finding a way to best improve your circumstance and still be considerate without putting yourself last is really important.
Jordan on school accommodations that helped him with his narcolepsy:
When I was in third grade, we decided to get a separate room. And whenever I would fall asleep, my teacher would just send me to that room where I could go take a nap, a small nap for a while, and then come back to the class refreshed. And I would usually be good for that day. But after sixth grade, I didn't want to do that anymore. Because it was kind of embarrassing. … Especially when my friends come to the nurse's office and just see me just sleeping there. And then I just open the door and everyone just turns and looks at me. You know how that feeling where everyone just looks at you, just like: Hey, guys. So we changed. And I would start taking medicine that would help me stay up. That helped a lot.
For as much as people talk about unconditional love, well, when you have a condition that you can't help, you find out exactly where the strings are attached.Andre Royal Sr.
