Narcolepsy is a rare, chronic sleeping disorder that causes sleep attacks during the day. The disorder can disrupt a person’s schedule, cause embarrassment, and can at times be a threat to a person’s safety. There is no cure for narcolepsy, but there are many ways of coping with the disorder. One important way to cope is through narcolepsy support groups.
Why find a narcolepsy support group?
If you have narcolepsy, why should you seek out a support group? Isn’t it enough to seek the help of a doctor? Of course, your health care provider will be your main source of help when it comes to treating narcolepsy. But the fact is, sometimes it’s nice to know you are not alone in your struggle. The doctor doesn’t know what it’s like to experience narcolepsy, and probably none of your friends or family do either. A support group will understand, be able to offer advice and tips, and can be a place for you to vent your feelings to people who know what you’re going through.
A support group doesn’t have to be in-person, either. If there isn’t a support group near you, there are plenty of online resources and forums that can provide a narcolepsy network of support for you. And if you want to, you can even start your own support group if you can’t find one. You never know who may be suffering in silence!
Support Groups Near You
How do you find a narcolepsy support group in your area? It isn’t easy. Narcolepsy affects one in every 2,000 people, and it is estimated that only one in four people who have it know that they do. So finding people with narcolepsy can be a challenge. But there are several places online that you can go to help you find a local support group.
- Narcolepsy Network: this site shares support groups in several different states. Make sure to look at states adjacent to yours if you don’t find one in your home state.
- If there is a university near you, there is the possibility that they have a center on sleep disorders. You can always call to find out if they have information about a support group.
- International Organizations
Narcolepsy Forum Support
If you can’t find a support group near you, there is still plenty of narcolepsy help online. All you need is access to the Internet, and you’ve got a number of narcolepsy forums at your fingertips. These forums are generally full of helpful people who are willing to share their experiences and offer advice. If you haven’t tried a forum before, give it a shot. It’s nice to have a place to go (even if it’s online) where people understand what you’re going through. Here are a few online resources to check out.
- Narcolepsy Network online forums
- Talk about Sleep forum
- MD Junction Narcolepsy Support Forum
- Sleep Net Narcolepsy forum
- National Sleep Foundation forum
Because so few people have narcolepsy, it can be tough to find people who can relate to your condition and understand the challenges you face. Talking with someone who understands can be a huge relief, and can even be part of your treatment plan. If you can, the ideal situation would be to find a group nearby that you can attend. But if there’s nothing in your area, it’s easy to join an online forum and find the support that you need.
If you have narcolepsy, it can feel very isolating. But it doesn’t have to be that way. Seek out those who can offer support and encouragement. You’re definitely not alone in this.