I’ve found that people feel very differently about support groups for their diseases, including narcolepsy.
Some seek them out. Others avoid them at all costs. Some might not like the idea, but know they should go. Others might be afraid.
Personally, I think support groups, or at least some kind of support, can make a big difference. But I do not think anyone should be pressured into going.
That’s the thing about support groups – the decision to go should be yours and yours alone.
Once you decide, there are SO many out there, just a couple clicks away (thank goodness for the Internet).
The Narcolepsy Network® – which, by the way, is a fantastic online resource – has a handy list of support groups by state.
According to the site:
“Having the support of other people with narcolepsy is an important part of living well with narcolepsy.”
And that’s because you’re around people who get it – who are talking in first-person, not in second or third. The Network also recommends support groups to family or friends of people with narcolepsy.
Currently, the list includes 28 states, with more than 40 support groups. Each support group includes the location it serves, a website and a way to contact the group.
If your state isn’t included in the list, don’t worry. The page redirects you to Narcolepsy Network’s online message boards, as well as a virtual Facebook support group.
Maybe you’re interested in starting your own support group? Well, there’s information on that, too. The Narcolepsy Network produced a video on just that topic, and it’s available here.
All of this to say, there are so many resources out there. Ways to find answers to your questions. Ways to find other people going through the same thing.
They’re out there for you to find – when you’re ready.
And if you have narcolepsy, I’d encourage you to start with NarcolepsyNetwork.org.
