Confessions of a Teenage Narcoleptic

In late 2015 I was diagnosed with a rare brain disorder—Narcolepsy. Specifically, I experience EDS (Excessive Daytime Sleepiness). Narcolepsy affects around 25,000 people in the UK, and luckily for me, I'm one of them.

My experience with Narcolepsy is decidedly a lot more positive, when looking at the experiences of others with variations of the condition. I'm truly one of the lucky ones.

With medication, my condition is easily manageable. I can drive. I don't have Cataplexy (sudden loss of muscle tone). I don't hallucinate, or have sleep paralysis. I'm able to live a pretty "normal" life.

But, it isn't all sunshine and rainbows. It's difficult sometimes. Even more so, the struggles I face are worsened by the feeling of isolation, which comes as a package deal with the diagnosis of a rare disorder. Finding people to relate to—finding your "people"—it isn't easy.

Over the last few years, I've come to collect a list of things only Narcoleptic people would truly be able to understand. Here are a few of my most relatable ideas:

1. Medication is great, and it helps me to live a decent, half-normal life. But, the bane of your life is having to refill your set of daily medicine trays each week.
2. Whilst falling asleep in the daytime is no problem for you - falling asleep at night is often the hardest task of the day, and once you've fallen asleep, it isn't long before you wake up again (and again, and again, and again...).
3. Medication side effects are the worst. Having your body in a permanent state of stress. Not being able to eat your favourite foods because of chronic indigestion. Grinding your teeth at night because your physical state says "anxious, stressed, worried," even if your mental state does not.
4. Public transport is often an anxiety-inducing, stress-wrangling experience. Your fear of falling asleep on the train may seem irrational to some, but it's real. And it's there.
5. You've often wasted money on experiences, which turned into hardcore nap sessions, (throwback to my 16th birthday, when I physically could not stop myself falling asleep watching Les Mis at the theatre. No amount of water or mints being shoved into my face could help).
6. People don't understand. You can recall countless times when, after explaining your condition, someone will tell you that "you're so lucky! I wish I could just fall asleep whenever I want to!" (Newsflash: you really don't.)
7. School. Falling asleep in class isn't only embarrassing, but it means that you miss out on your education. (Before diagnosis, I would fall asleep in at least 2-3 of 5 lessons in a day, often whilst reading or writing). You dedicate hours to copying up missed or messy notes, and writing around big splotches of ink on pages where your pen got held down.
8. No matter how much sleep you get, you never feel refreshed. You don't remember how it felt to not be at least a little bit tired, and you envy those who get to wake up in the morning and actually feel refreshed.

So, there you have it—8 things you'll struggle to understand if you don't have Narcolepsy.

Currently, there is no cure for Narcolepsy, and due to it being a rare disease, there is a general ignorance amongst the general public, not only regarding Narcolepsy but many other sleep-related disorders too.

I implore you to try and learn more about Narcolepsy, and I encourage you to donate to NarcolepsyUK.