World Narcolepsy Day: The Importance of Advocacy

World Narcolepsy Day is on September 22 each year.

Several organizations hold events to celebrate this day of awareness. Project Sleep was the first organization that I heard about when I first learned about World Narcolepsy Day a few years ago. The aim of this day is to unite those in the narcolepsy community to share their stories and increase awareness of this condition.

Getting a narcolepsy diagnosis is difficult

According to Narcolepsy Network, “Narcolepsy can be difficult to diagnose because some of its symptoms, such as fatigue, are common to many conditions. The average time between the onset of symptoms and diagnosis is seven years.”¹

I was lucky to be diagnosed at 23 years old. Previously, I was misdiagnosed with anxiety and depression, but finally, my doctor recommended I get a sleep study to confirm that I had a sleep disorder.

I am not ashamed of my narcolepsy

I am very open about my narcolepsy diagnosis to anyone I encounter. My social media presence has focused on sharing my story with others in hopes that it will help others get diagnosed sooner. I am not ashamed of my narcolepsy; rather, I use it as a tool to inspire others to realize the importance of sleep health.

A chance to be an advocate for someone else

I actually had an interesting encounter with a stranger on a flight. I was trying to rest when I overheard the woman in the row next to me mention the word narcolepsy, and my eyes shot wide open. Leaning over my partner, I told the woman that I was diagnosed with narcolepsy.

She explained that she was going to get a sleep study done after returning home from vacation. After doing her own research, she told her doctor of her suspicions of potentially having a sleep disorder. I explained what the condition is like, and how medication has made a significant impact on my life and wished her luck on her journey to diagnosis.

If we don't share our stories, who will?

Advocacy isn’t easy. It takes guts to stand up in front of someone and tell them you live with a chronic illness that has a big effect on your life. It can be scary asking for accommodations, changing your life plans, or even being vulnerable to loved ones because you are having trouble with your symptoms.

Some people might be judgemental and say things like, "Well, I’m tired, too, but you don’t see me napping on the job.” But the way I look at it is that no one will know narcolepsy exists unless we tell them about it. Thanks to organizations like Project Sleep, Know Narcolepsy, Wake Up Narcolepsy, and countless others, more and more people are getting diagnosed sooner. I believe these organizations wouldn’t be where they are today if it weren’t for those of us sharing our stories.

Celebrate this day of awareness

This year, in celebration of World Narcolepsy Day, I encourage you to do something to advocate for narcolepsy.

Use the hashtag #WorldNarcolepsyDay on a social media post. Hang up flyers around your work with facts about sleep disorders. Join an event with one of the many organizations that celebrate this day.

You never know how your words might change someone’s life.

How are you celebrating World Narcolepsy Day this year? Share a story with us in the comments below!