Julie Flygare is a leading narcolepsy spokesperson, published author, blogger, yogi and runner diagnosed with narcolepsy and cataplexy. In this video she shares how she was diagnosed and her friend's and family's reaction to her diagnosis.
When I was diagnosed, I felt a sense of relief because here for so long these different things have been happening to me and I kind of thought they are my fault in a way, so having the validation of someone saying these are real symptoms of a real disorder was very validating, but at the same time I still did not know really what it meant to live with narcolepsy, I didn't know so much what was going to be next. If there was a cure, if there was a treatment at all, so it was, but a little bit scary too. My family was probably as confused as I was. I did not know much about narcolepsy before I got it and no one in my family knew very much about it either, so we were learning together. I think with the neurological illness, it does not show on my face so often. It can be hard for friends and family to really grasp that this is real because for the most part a lot of it is very internal. I think that a lot of people have misperceptions about narcolepsy, so I mean I thought it was a sort of a joke about someone falling asleep when they are standing or talking, so some of my friends had a very similar reaction when I said, oh I have narcolepsy and they kind of disregard it like I told them I have the flu, but I did not know enough either, so I just sort of laugh along with them and it wasn't probably for months or even I would say years before I would really say no. Actually it is not a joke, it is very serious illness, so I did not get a ton of support right away from my friends and my family, but I cannot say it is necessarily their fault. We were all learning together. I think both my friends and my family really went through process. I had to figure out what narcolepsy was and that took a long time before I could even communicate to them what it really was and how they could help me with it.