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Getting Support for Narcolepsy

Medically Reviewed by Neha Pathak, MD on July 08, 2021

Narcolepsy used to be a sure-fire punchline. It seemed everybody laughed at the character who instantly fell asleep at the worst possible moment. Everybody except people who had narcolepsy.

These days, comedians seem to know better than to mock people for their health conditions. But people with narcolepsy still have an uphill battle when it comes to normalizing their neurological disorder. Joining a support group for narcolepsy can help, though.

Support groups provide not only emotional support, but also valuable information -- from how to talk to your co-workers about narcolepsy to which narcolepsy medicines have the fewest side effects. Experts say social support (including support groups) should be an essential part of a narcolepsy treatment plan.

What to Expect at a Narcolepsy Support Group

If you’ve never been to a narcolepsy support group before, you might wonder what it’s like or what you might get out of it.

There isn’t a single formula for a successful narcolepsy support group. But they’re all based on one idea: to help people live better with this neurological disorder. Support groups for narcolepsy all tend to offer:

  • Opportunities to share personal experiences
  • Strategies to handle different situations
  • Information on the disease or its treatments
  • Occasionally, guest lectures in a relevant field (like psychology)

You can also get all kinds of questions answered by your narcolepsy support group.

Benefits of Narcolepsy Support Groups

Some people are eager to join a support group. Finally, they can meet up with others who understand narcolepsy without any need for explanation.

But not everyone is so comfortable sharing their stories. Some don’t want to broadcast the amount of damage this disorder has caused.

The thing is, it doesn’t matter whether you go to therapy skipping or dragging your feet. The possible benefits are clear and compelling -- and ultimately good for your health. Just a few are:

  • Less stress
  • Less depression or anxiety
  • Feeling less isolated or judged
  • New, better ways to face the challenges of narcolepsy
  • Increased motivation to manage your condition or stick to your treatment plan
  • Gaining a sense of empowerment, control, or hope

Where to Find Narcolepsy Support Groups

Your doctor should be able to recommend a support group for narcolepsy. You can also find local, in-person support groups with a simple internet search.

In-person groups. You’ll find they’re a little more formal than, say, book clubs. (No appetizers or wine at these gatherings.) The in-person narcolepsy support groups are likely offered by a:

  • Nonprofit advocacy organization
  • Health clinic
  • Hospital
  • Community center

Online support groups. When you get support from online narcolepsy communities, you’ll connect with people from all over the country (and other countries, too). A few examples of online support groups, including message boards and Twitter chats, include:

Beyond Support Groups

Support groups are great resources to help you manage life with narcolepsy. But they’re not for everyone, and they’re not a substitute for professional therapy. If you feel especially drained, stressed, afraid, anxious, or depressed, consider individual counseling.

WebMD Medical Reference

Sources

SOURCES:

Mayo Clinic: “Narcolepsy,” “Support groups: Make connections, get help.”

Nature: “A harrowing journey through disordered sleep.”

Nature and Science of Sleep: “Living with Narcolepsy: Current Management Strategies, Future Prospects, and Overlooked Real-Life Concerns.”

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