Julie Flygare is a leading narcolepsy spokesperson, published author, blogger, yogi and runner diagnosed with narcolepsy and cataplexy. In this video she discusses why she advocates for people suffering from narcolepsy.
It’s my hope by raising awareness, more people will feel comfortable speaking up and also that we will get people diagnosed quicker and able to get the help that they deserve. I was actually in law school when I was diagnosed, so I decided to study a lot of health law which is something I never really thought much about before, so I studied health policy and decided when I graduated to take a completely different direction with my life. I felt that narcolepsy was sort of sucked in a catch 22. There are a lot of misperceptions about what the illness is and so a lot of people with narcolepsy don’t want to disclose it to people because they are afraid of the misperceptions. So how do we get out of this? So, I finally decided to just do something different, break the cycle, talk about it. You know, it was a hard experience but it isn't a joke either. So by rising up my voice, I want to start breaking the cycle. I didn't know what narcolepsy was before I got it. I thought it was a joke about someone falling asleep when they are standing or in the middle of the conversation, really the only the context I had heard it or in a movie. So, when I had the symptoms of narcolepsy, I went a few years with these symptoms, trying to find answers and going to doctors and eventually found the right words and thought narcolepsy is just a joke about someone falling asleep, well wait, may it’s not, may it’s just other disorder. So I found that narcolepsy really is nothing like what our society perceives it to be and not, you know, you can get a little bit annoyed when people make jokes like, oh you are going to fall asleep right now, but it’s not their fault, this is just what, for whatever reason, is the perception that’s out there and I find really that people are totally fascinated when they learn about the real illness. Narcolepsy is a disorder of the dream cycle, so aspects of dream sleep are happening at inappropriate times when I am conscious. So it’s a very fascinating disorder and people usually end up thanking me, wow, thank you, I just learned something new. So it’s really fun to be able to change perceptions and I just keep fighting. I know that there are a lot of misperceptions out there and they don’t really bother me anymore. I know people don’t know what it is and it’s a great opportunity to raise awareness and educate people. For someone with narcolepsy, I will definitely say hang in there, it can be very overwhelming at first, but it will be okay, that’s what I would tell myself if I could go back and speak to myself the first day I was diagnosed, just over and over I would say, it’s going to be okay. It’s a lot to adjust to and there is a lot to learn, a lot to educate your friends and your family about, but there are lots of people out there living successfully with narcolepsy doing wonderful things, I am inspired everyday by what people are accomplishing with narcolepsy, they are overcoming so much adversity that to be part of a community is pretty awesome. I am very-very proud to be a person with narcolepsy and to be a part of this great community, so just hang in there.