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dzeldaz Message
14 Feb 2012, 06:08 AM

Sara, you are fortunate to have been diagnosed so early in life. I had such a difficult time in high school (brief addiction to No-Doz) and college (I suffered stomach aches from eating Tic-Tacs and chewing gum to keep me awake in classes). I was not diagnosed until my late forties. Only my husband, children and a couple of extremely close friends know of my true diagnosis. I have not told work or other public outlets on the advice of my doctor who let me know I might have a difficult time. I was concerned that some friends might not let me drive their children out of ignorance. My odd hours, sleeplessness and sleepiness are explained as a "sleep disorder". I, too, do not have cataplexy. As far as the rest of my relatives, it has not been worth telling them. All I would hear is nonsense based on their perceived knowledge. They would all start playing doctor and any move I would make off the straight line would be blamed on narcolepsy. My children and husband are much more understanding. I have learned that sharing everything is not always a good idea. If I am tired or I feel like I am on the way out, my husband knows the look and I just go into another room and lie down. Some family members think I am "escaping" and a bit odd, but that is preferable to me than the alternative. I love my relatives, though I love my privacy and self-esteem more. It is time for some quality sleep!
dzeldaz Message
15 Feb 2012, 09:24 AM

So sorry to hear that those close to you, and in a position to understand, are not there to support you. I guess for my kids it has been a way of life to which I was just able to attach a name. My husband calls me high-maintenance and I remind him I could live up to that! He is "high-maintenance" as well (sorry guys) as he is male. I like this forum as one can express the frustration involved with narcolepsy. Until if affected me, I did not understand it. There are some things best not shared with some people. I am not a proponent of ignorance, though in some cases, it works out very well Please don't let their resposes and reactions get you down.