Wednesday Words of Wisdom for the Weary: Support

With only a fraction of the population – about 0.04% – being diagnosed with narcolepsy, it can seem difficult to find support. While I have a loving husband who provides a source of strength for me, it is sometimes necessary for me to find other people fighting the same fight. To find others who can understand exactly how you feel is immeasurably important in managing the emotional affects of living with narcolepsy. Luckily, there are resources out there that help people with narcolepsy connect with each other.

www.narcolepsynetwork.org – provides information about narcolepsy including educational materials to distribute, as well as a message board for people with narcolepsy and their families to ask questions, vent, and share tips. Use of the message boards is free, but I would also strongly encourage purchasing a membership to be able to receive newsletters and invitations to events. It doesn’t cost much, and it’s a great way to help support one of the biggest patient support organizations for people with narcolepsy. Narcolepsy Network also puts on an annual conference, which I’m extremely excited about attending this year.

Support Groups – Narcolepsy Network has a list of support groups available on their website.

www.talkaboutsleep.com – message boards are free, but I’ve had some difficulty registering for an account. I also hear they do chats.

Twitter – a simple search for narcolepsy will help you locate other PWN that you can follow and interact with. There are also sleep clinics and other organizations that tweet helpful articles about sleep and sleep disorders. You can follow me by clicking on the Follow @stridesagainstN button on the right sidebar of my blog.

Facebook – search for narcolepsy, and you’ll find a few groups you can join. Some of them are open and some of them are closed, so be aware of which type of group you’re joining.

rareconnect.org – This is a newer site, so there aren’t a lot of members yet, but I appreciate the global aspect of this community. You can share stories and participate in discussions.

If you need assistance in locating support avenues, please feel free to shoot me an email at stridesagainstnarcolepsy@gmail.com.

I am so thankful to have found others to talk with who share the same struggles and triumphs. It’s amazing how much better I feel after talking with my narcolepsy pals. I do not feel alone, and you shouldn’t either.

Where do you turn to for support? Is there a support group in your area?

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