When I tell people I have narcolepsy, a common but infuriating response I get is, “Wow, really? I never would have known -- you don’t look like someone who would have that.”
My favorite reply is, “Just because someone carries it well doesn’t mean it’s not heavy.” While narcolepsy is an invisible condition, the symptoms and episodes can be very visible at times. I’m just grateful to have found some ways to manage my symptoms.
When I was diagnosed, I remember my doctor flooding me with information about different treatment options and management tips. I began asking myself, “How can I plan to manage these symptoms and episodes when they’re so inconsistent and spontaneous?”
One of the hardest parts of adjusting to a narcolepsy diagnosis is realizing that there’s really no “one size fits all.” The ways you manage your symptoms may work for you, but not for someone else. The same goes for finding a medication that works, which can be a difficult process to navigate.
I remember a time in college -- I was sitting in class, alert and ready to learn, when I suddenly felt a wave of sleepiness come over me. It felt like there was nothing I could do; like I was drowning, trying to come up for air, but I wasn’t able to keep up with the waves crashing down on me.
I later learned this is called excessive daytime sleepiness. In addition, hallucinations, sleep paralysis, disrupted nighttime sleep, brain fog, and cataplexy (when a strong emotion causes sudden muscle weakness), are all things people with narcolepsy experience frequently. It’s important to know that symptoms vary by person. You may not experience every symptom, and some symptoms can present themselves differently.
I’ve learned to accept my situation, listen to my body, and know my limits. I know that if I try to push through an episode, I’m going to be miserable. If I can feel an episode coming on, I know to remove myself and get to a safe place.
For example, there was a time I was studying at my desk when I felt another wave coming over me. I knew the most productive thing to do was to lie down and nap for 20 minutes. I was able to wake up feeling refreshed, alert, and able to retain the information I was studying.
About a year ago, I was listening to one of my favorite podcasts, called The Mindset Mentor. The host talked about how he tracks his energy trends to maximize productivity in his everyday life. I thought to myself, “Let’s do this narcolepsy style.”
I started tracking my bedtime, when I wake up, quality of sleep, and what time I take my medication. Then I can look at my trends and estimate that I might feel most productive between 8:30 and 11:00 a.m. I try to plan my days accordingly. Of course, this isn’t an ultimate fix, but it helps.
I still find it difficult to manage things like brain fog. I started using the phrase “I need a minute” when I need time to regroup. While it can be difficult to be open about narcolepsy, I’ve found it helps others understand me better. I can be my own advocate and stand up for myself. This isn’t making excuses, but rather bringing awareness to your situation.
Though it can be frustrating, the one good thing about symptoms and episodes being so individualized is that you have the power to find a process that fits your needs. My advice to others is this: Even if you become discouraged, remember to be patient, listen to your body, and you’ll learn what works best for you.
Photo Credit: Marjan_Apostolovic/iStock via Getty Images