Successful First Narcolepsy Conference 

I had the privilege of attending a national narcolepsy conference, something I never thought I would be able to do! For one, it is difficult for me to travel (and even be in public spaces at all) due to my narcolepsy symptoms. But I am so grateful I was able to attend.

Here's what happened.

Meeting friends I know and love

My favorite part of attending this national narcolepsy conference was getting to meet my online narcolepsy friends in person. We’d been talking together for so many years, that in many cases I felt like I already knew these people! They’d supported me during the worst of times. They’d cheered me on during the best of times.

I feel so grateful for the narcolepsy community and the many friends that I have gained because of it. Getting to meet these friends in person was so amazing; it even felt surreal!

After the conference I was able to hang out with my good friend and his fiancé. We discussed our dreams for the future, our struggles, our hopes for better times, and gratitude for where we were in life despite our challenges. Connecting on this level helped me feel so grounded in my ideals and plans for the future. I really look forward to seeing where we end up. I look forward to seeing the art we make, the connections we create, and the opportunities that continue to come to us.

Living with narcolepsy means constantly having to push ourselves on a level that able-bodied people don’t often understand. Personally, I think this makes us so strong. I know that our dreams will find us, simply because we don’t have any other option other than to keep going.

Speaking on topics I am passionate about

At this national narcolepsy conference, I was asked to be a keynote speaker on a panel. We discussed inclusivity in the sleep space. I talked about my experience with being a LGBTQIA+ support group leader for people with narcolepsy, and the kind of barriers that we face in medicine and life itself. Other sleep inequalities that were discussed included barriers that race can cause when it comes to accessing regular and quality medical care.

All of these topics are near and dear to my heart. I see how people in the narcolepsy space struggle to get their needs met for reasons such as these, and it felt empowering to be able to express these issues on a global scale, not only for myself but for my narcolepsy family.

Watching other people have sleep attacks

Finally, getting to see other people with narcolepsy struggling with sleep attacks during the conference was bittersweet. On one hand, it was so validating to see my symptoms in someone else’s body for once. It was proof, in the flesh, that I wasn’t a freak; I wasn’t making up my symptoms. Look! Someone else is so tired that they can’t hold up their head, too! On the other hand, it was painful to watch knowing how much suffering comes along with narcolepsy symptoms.

Have you ever attended a narcolepsy conference? Would you be so inclined to? Please share your experiences in the comments below; I’d love to hear from you!