My New Role in the Narcolepsy Community

When I first started going to online support groups with Wake Up Narcolepsy, I never would have guessed I would be where I am today. I remember my first ever meeting like it was yesterday. Everyone was so welcoming, and I had never felt so accepted ever before.

A meeting that changed my life

I remember introducing myself at that first meeting and telling everyone about my journey. I was nervous at first, but once I was on the Zoom call and got to know everyone on it, it changed my life forever.

For the first time in my life, I was talking with so many other people who knew exactly what I was going through. For the first time ever, I didn’t feel so alone.

Learning about narcolepsy and finding a family

Joining these meetings has taught me a lot about narcolepsy. It has taught me that there are others out there living a very similar life as me. I learned that others with narcolepsy got misdiagnosed with the same things I did growing up.

Soon after going to these meetings, I got in a group chat with a lot from the online group, and it was life-changing. I could message the group whenever I had questions, had a bad day, had an accomplishment, literally anything. These people became my family.

An opportunity to take a new role

If I had this group when I was growing up or going through the diagnosis process, my life would have been so different. That is why I am so glad that I got the chance to start this new opportunity a few months ago.

Recently I took on a new role with these support groups. Wake Up Narcolepsy recently had several new groups available. For almost a month now, I have been a co-facilitator for the teen group. This group is for ages 13 to 17. We meet weekly and it has been such a great experience so far.

Supporting teenagers with narcolepsy

Being there for these teens with narcolepsy has been so rewarding. I had symptoms of narcolepsy as a teen, but I was undiagnosed. I would have done anything to have a group like this to connect with others my age during middle school and high school.

It has only been a couple of months since the group started, and the group is not very big yet, but I know it will get there. Even with the small group we have now, we always have great conversations.

Support extends beyond our meetings

With the new program that Wake Up Narcolepsy goes through for the online meetings, we now have the ability to chat through the site, which is really nice because the teens in our groups don’t have social media to have group chats like I do with my other support group.

Having the chat feature really is an added bonus to the group because it is nice to have the ability to chat with the teens throughout the week in case something comes up that they need to talk about.

If you have a teen with narcolepsy and would like to know more about the group, check out Wake Up Narcolepsy support groups.

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