I’ve never been one to believe in turning to the blogosphere for answers—WebMD, yes—but not those personal blogs about various conditions or struggles. I do read Odyssey articles and the general sites dedicated to the conditions that are run by the organization of blah blah. Recently, however, I have decided to join a Narcolepsy support group online because I cannot find one near my school and I have been pleasantly surprised. The group is on Facebook and is private so you have to be approved to join which definitely allows for more privacy. While friends and family of people with Narcolepsy can join, a lot of the posts are from people who suffer from Narcolepsy and that is really reassuring. The posts range from different medication talks to techniques for everyday life to problems that are caused in daily life by Narcolepsy to funny pictures that reach narcoleptics on a deep level. Above all it is nice to know that we aren’t alone.
It can be extremely isolating to have narcolepsy because people without it just assume you are lazy when you are in fact completely exhausted. When I first joined I posted something about having a hard time keeping a sleep schedule as a college student and I asked for tips. One person said what the doctor says which is to be as consistent as possible with my sleep schedule, but she added that it won’t always be possible or easy and not to be mad at myself if I mess up. I realized that I had being getting so frustrated when I went to sleep too late or overslept that it was more stressful than helpful. It seems like such a simple thing, but when someone else who understands says “look, it’s hard and we all struggle with it so just do the best you can” it makes you feel less alone. I’m not saying that by joining an online support group life becomes a cakewalk because it doesn’t, support groups just support you. I’m sure some people are thinking “obviously online support groups are supportive,” and I can be slow on the uptake, but I always thought you need to actually sit in a circle and talk about yourself to strangers to feel supported and now I know you don’t. There’s something amazing about a Facebook group that brings together a random group of strangers over a relatively uncommon disease. So if you need support--for pretty much anything--check Facebook or Google for a group you can join and you might be surprised how helpful it is.