Narcolepsy can be hard to see, and its symptoms are sometimes embarrassing. This may make it challenging to understand. For these reasons, people with narcolepsy might feel very much alone at times.
Support groups give you a chance to connect with other people who have narcolepsy.
The ability to learn from and lean on others who share the same condition can be a big comfort and may help you live better with the disorder. One caveat: Remember that information posted online may not always be accurate or pertain to your situation and isn’t a substitute for medical advice.
If you’re not sure where to find a support group, here’s a guide to just some of the available in-person and online resources. The links in the following sections can be a good place to start your search.
Online forums and message boards allow people with narcolepsy, as well as their family members and caregivers, to post questions or offer suggestions based on what they’ve learned.
On these websites, you can find out about new research and drug approvals. There are also tools and tips to help you live better with this condition.
Online narcolepsy forums
In-person support groups are available across the country if you’d prefer to meet face-to-face with other people who have narcolepsy. These groups are usually moderated by someone with expertise in managing this condition.
To find a narcolepsy support group where you live, you can check with the Narcolepsy Network, which hosts these groups all over the country. Meetup also has several of these in-person support groups.
These groups are usually moderated by someone with expertise in managing this condition.
Maybe you’d prefer to meet other people with narcolepsy from the comfort of your home. Or it could be that the COVID-19 pandemic is keeping you from being near other people.
Check out one of these online narcolepsy support groups available through various organizations and on social media websites:
Online narcolepsy support groups
- Living with Narcolepsy online support group
- Living with Narcolepsy Facebook page
- Living with Narcolepsy Instagram page
- Narcolepsy Network Facebook support group (This is a private group, so you’ll need to ask permission to join.)
- #Nchat on Twitter
Support groups can be an invaluable tool to help you live better with narcolepsy. You’ll learn about new treatments and tips for managing your symptoms. You might also find out about research studies you can participate in.
If you’re not comfortable meeting in person, look into online forums and support groups. You can remain anonymous while still getting the information you need to gain more control over your condition.