My Advice to People Newly Diagnosed With Narcolepsy
Last updated: September 2021
When I was first diagnosed with narcolepsy type 2, I was not sure what to expect and thought I was alone since I don’t know anyone in person with narcolepsy. At first, I joined Facebook groups, which were helpful, but I still felt pretty alone because I did not talk to the people in those groups every day.
I got to thinking and realized if I knew about the resources or all of the tips I have gotten since being diagnosed, I wouldn’t have felt so alone at the beginning. Here is a list of some things I have found helpful since being diagnosed.
Do your research
Research as much as you can, whether it is about narcolepsy in general or if you are researching what kind of resources are available for people with narcolepsy. Several different organizations have a lot of resources for people with narcolepsy.
Some of the ones I use the most are PWN4PWN-people with narcolepsy for people with narcolepsy, Wake Up Narcolepsy, Project Sleep, and of course Narcolepsy.Sleep-Disorders.net. Most, if not all, of these organizations have both information on narcolepsy and also resources for people with narcolepsy and caregivers with narcolepsy.
Reach out to others with narcolepsy
If you see an article you like (or relate to) that someone wrote or if you see a post on social media that you relate to, reach out to the author and ask them questions or just talk to them.
I have come to find that there are so many people that will have a conversation with you or show you additional resources. Doing this has made me feel like I am not so alone.
Join online support group meetings
Several different organizations hold these meetings. I was definitely nervous about joining these meetings because I did not know anyone else in them. I have tried a couple of different groups, but recently I have found one that is like a whole new family to me.
It made me realize that there are others who understand what I go through daily. I never thought I would feel so welcomed with so many people. Just remember you are not alone in this journey!
Read about others' journeys
The biggest resource I found after a year of being diagnosed is the book Wide Awake & Dreaming but Julie Flygare. Reading this book taught me so many things about myself and narcolepsy. I had no idea that I had sleep paralysis until I read this book. I thought it was just bad dreams and that it was normal.
I also learned about how often I have automatic behaviors. This book is also good to have friends or family members read if they don’t quite understand narcolepsy and what you are going through.
This is just a small list of things I know now that I wish I knew when I was first diagnosed. Just know that you are not alone, and there are so many resources for us out there. Is there anything you wish you knew when you first were diagnosed that you know now? I would love to know what you have found helpful!
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