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by Jack (no login)
I read on another forum such great advice about disclosure to others regarding narcolepsy that I think it should be repeated(Sorry for stealing it if the author is out there). One group, probably the majority, you should never tell. They won't understand, consider you a complainer and probably use the information as an opportunity to ridicule you. The second group, far smaller, you should tell but in a very brief and simple way. They won't or can't handle too many details but they are not complete blockheads as the other group. The last, and by far the tiniest group you can actually disclose completely everything about the illness and they will be interested and understand.
I tell you this has to be one of the few diseases that others can completely deny you have. After coming home from the diagnosis of my sleep study I told my family what the results were. Two or three said no I didn't have it. To this day no one in my family ever asks how I'm getting along with the challenges of Narcolepsy. One so called friend started making fun of me and another never mentions it to this day. Isn't that bizarre? Now granted, I'm pretty high functioning as far as N. goes--no collapsing--no falling asleep in the middle of a sentence. But I still think that if I came home with a diagnosis of type 2 diabetes instead of type 1, no one would say no you don't have diabetes. I would think also that I would be asked occasionally how I'm managing my blood sugar levels. I know as a N. I've had trouble fighting the battles of ignorance regarding the disease and I think we all my be included in this to some degree. It takes a lot of energy to not be discounted.