Emily - Narcolepsy

    Hi! My name is Emily and this is my story with narcolepsy.

    I am 18 years old and I am in my first year of college. Creditwise I am a sophomore because I took a lot of college classes during high school to get ahead. This way I was also able to graduate high school a year early. My major is Neuroscience and I have plans to go to med school to become a surgeon, and this is not because of Grey’s Anatomy, the show. My dream is to become a drama neurosurgeon. To be honest I do not know exactly where this dream actually came from. All I remember is literally being a child and thinking that I want to become a neurosurgeon. I always dropped the idea because I thought that I would never be smart enough but when I was first diagnosed, I saw a future and I jumped at my chance. 

    Since the day I was born, sleepiness was always an issue. My mother tells me how when I was a baby I was always asleep. She says that I never cried unless it was to wake me up to feed me. 

    Moving to elementary school, my mother got pamphlets, as well as a call from Child Protective Services (CPS), because I was falling asleep in class every day. My mother told them repeatedly that I was going to bed at 7 pm and waking up at 8 am, everyday. It took a lot of time to actually show the school the truth. 

    After that incident it just became normal for me to fall asleep in school. Now the issue was that everybody just assumed that I was lazy or that I didn’t care or that I just wasn’t trying enough, because I was always falling asleep. I remember having a teacher who said that if you fell asleep or even put your arm on your desk, it meant that you did not care. And that’s what really put a toll on my self-esteem and myself because I went through elementary, middle, and part of high school with bad grades, not because I wasn’t trying hard enough, but because I was falling asleep in class and my brain wasn’t letting me focus enough to take a test. My parents tried tutors, online services, switching me from school to school, to see what would work. But they did not work because my brain was just always foggy and always out of it. Then this is what started all of the doctors appointments, trying to figure out what is wrong with me. I had so many doctors appointments trying to figure out what was wrong, but they missed the biggest symptom. All, and I mean ALL the doctors I saw before the age of 15 said that my sleepiness was because of growing. So instead of looking at the sleepiness, we looked at all the other symptoms 

    These are all the doctors I’ve been to I’ve been to a back doctor a pediatrician, a pediatric sleep doctor, psychiatrist pediatric sleep, pulmonologist- a normal pulmonologist- a normal sleep Doctor- part pulmonologist - somebody who works with oh allergies- I did a prick test- a food allergy doctor and a normal family physician obviously, an OB/GYN. And that is not even labeling them all. I am also about to see a neurologist because of the medicines basically screwing with my heads. 


    It’s funny because my mom and I have a joke that our bonding time is going to doctors appointments together because we would drive in the car sometimes for an hour sometimes for less than that just to go see some doctors to figure out what’s up. 

    It was not until my sophomore year of high school where my doctor finally gave me a referral to a sleep doctor. What happened was that one day I accidentally slept 16 hours straight and finally that’s when my parents were like, OK something is wrong. That doctor had me do a sleep study, and I was diagnosed with narcolepsy with cataplexy (now known as type one narcolepsy). 

    Cataplexy - when your whole (or partial) body goes limp due to a number of factors. When I was younger I remember directly telling my mother that when I would fall asleep it was like somebody would shut off my body without my permission, now today I know that that is what it’s called a sleeping attack or your cataplexy. However my cataplexy is usually irrelevant. It’s only when I’m extremely tired and having a sleep attack obviously, or whenever I laugh really hard, so I have to be careful when somebody tells a good joke 

    I never wanted to except that I had narcolepsy and it wasn’t until this month where I finally did. I was on this online support group, though FaceTime call, with and the moderator said to share your tip or trick to stay awake. And I was like my tip is something I did throughout high school and this is something I have never told anybody I literally don’t even tell people that’s because I always thought it was so stupid or so weird, it was to always have a whole bottle near me in case I have a sleeping attack. I would just down the entire water bottle. And as silly as it sounds, it kind of works sometimes sometimes. 

    Then this girl was like oh my God I did that to all throughout high school too and that is when it hit me like oh I really do have narcolepsy and from there I started going on Facebook (haha because I actually do use Facebook) and contacting other support groups to share my story, as well as, my concerns. 

    For the first time in my life it feels like I’m finally being heard. And that it feels amazing 

    I’ve spent my whole life basically just saying oh I’m tired I’m tired and then to these last couple of years where now it’s like this medicine works this medicine doesn’t. I’m at the point where I realize that if I don’t find what works for me then I can’t with the future the way that I want to. 

    I still have the sad truth of my future where I do not know if by thirty I will be applying for disability or I will be applying for fellowships, but whichever one it is I know, that no matter what, I want to help others. Whether it is through stories like this or simply being a surgeon. I want to make a difference, and that is NOT A DREAM, that will be reality. 

    Thank you so much for offering to publish my story. I am sorry it is a little all over the place but feel free to let me know if you have any questions!



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