International Narcolepsy Outreach

As a person living with narcolepsy, I often feel the pressure of loneliness that comes along with living with a rare disease. Some days it feels like no one understands how hard I have to work just to be able to live life, even in the smallest ways.

Increasing connections, specifically with people with narcolepsy, is one way that I combat these negative feelings of loneliness. Since narcolepsy is a rare disease, this often means that I get to connect with people from different countries and cultures. Although we live in very different places, we often have similar struggles and experiences when it comes to living with narcolepsy.

Connecting with others across the globe

I had the pleasure of attending a meeting between a U.S.-based narcolepsy organization and a Japan-based narcolepsy organization. This meeting was meant to bridge a gap between the two organizations, and compare programs to see how we are both serving our respective communities. It was interesting to see how similar our experiences were, despite our countries being very different.

Discussing the power of art with narcolepsy

One thing I found interesting is how people with narcolepsy are drawn to the arts all around the globe. I found this very inspiring, because art is something that I really started getting involved with when the onset of my narcolepsy symptoms began. Art is a way for me to accessibly express myself and my emotions. Living with narcolepsy is never easy. Thus, having a safe artistic outlet to depict the struggles that I face is very important for my mental wellbeing.

It was so exciting to see the art made by people with narcolepsy in our respective communities. This made me feel so connected to the people of Japan who suffer from Narcolepsy. It also validated my need for creating art as a way to cope with living with narcolepsy.

Touching on narcolepsy and obesity

One member of the Japan-based narcolepsy organization brought up the topic of comorbidities. This individual explains that they became obese due to their narcolepsy symptoms, and were recently diagnosed with type 2 diabetes as a result. Obesity is a common comorbidity of narcolepsy, and diabetes is a common comorbidity of obesity.^1,2

Many people in the U.S.-based narcolepsy organization piped up about their own weight struggles and resulting health issues from narcolepsy. It was validating for both parties, including myself, to know that we weren’t alone in these difficulties!

Personally, I struggled with gaining weight when my narcolepsy symptoms first started. I felt so hungry all the time. And being exhausted to the point of having automatic behaviors regularly meant that I was overeating without realizing it, just because I kept shoveling food into my mouth while falling asleep.

Now that I am on a strict medication and diet regime, my weight problems have improved. However, it is something I constantly have to monitor. And I often fear what would happen if I ever lost access to my medications. Knowing that I am not alone in the struggles of weight that come with narcolepsy really helped to soothe my feelings of shame and fear surrounding the subject.

Comforting to meet others

We are planning another meeting to catch up next year. I asked to be included again, because I found all of these commonalities fascinating! Additionally, it was truly comforting to meet more people with narcolepsy and learn about their similar efforts and experiences. If I am able to attend this meeting again next year, I plan to share more insights with our community when the time comes.

Do you have any friends with narcolepsy internationally? I’d love to hear about it!