Happy New Year!
1. How did you get diagnosed and how old were you? How did you feel?
In Canada high schools start in 10th grade, the summer prior to switching into high school I was super busy with soccer and was all around just exhausted. I would come home from soccer and fall asleep watching TV, I would nap every chance I got. Once September rolled around and I was back at school and in a new environment things slowly progressed. 10th grade involved more homework, it involved for hours of involvement; I found myself falling asleep in class and sometimes barely even making it to morning class. I still played soccer at a high level and was at practice nearly every day. My mother and I just figured it was the busy lifestyle I was living that left me exhausted. I went to the doctor about it and had a bunch of blood work done up to rule everything out; everything was normal. It wasn’t till I was on my way carpooling to a soccer practice with a teammate that my mother figured it out. Hannah, my teammate had made a complaint about her sleep the night prior; something along the lines of waking up more than once in her sleep. I was shocked and asked “well do you always sleep the whole night through?”. Her answer was like most people out there…Yes sleeping the whole night through is common; I was unaware and thought my waking of 5+ times a night was normal. My Mom put 2 and 2 together and within no time I was seeing a sleep doctor.
At the sleep clinic I was asked to have a sleep study (Polysomnograph); a diagnostic tool in which monitors your sleep habits and challenges. After sleeping over at the clinic I stayed the following day to have five twenty minute naps. I fell asleep in each nap and went into REM in all five. I was 15 at the time I did the test/study, and was diagnosed that next week with Narcolepsy. I can’t say exactly how I felt; I cried when my doctor told me because I felt a mix of relief and sadness. I was relieved to hear I wasn’t lazy or tired for no reason, but I was upset to hear that I had a chronic illness.
2. Is it difficult to manage your narcolepsy?
Prior to diagnosis it was impossible to manage my Narcolepsy; I was in survival mode and just going through the motions. Now with a diagnosis it’s rather simple to manage if I keep a healthy schedule. I have to make sure I get my rest, take my medication, eat properly, exercise regularly, etc. The more late nights I pull the harder my life becomes. If I decide to go out with friends one night and don’t get proper sleep, I will be playing catch up for a week. It’s difficult to be a young adult because there are lots of sleepless nights I would love to enjoy, but I have to pick and choose carefully.
3. How long did it take you to get used to the symptoms of narcolepsy?
I was already used to feeling sleepy and groggy all the time; I had to get used to feeling normal again! It took me a while at 15 to accept and understand narcolepsy. I often felt bitter towards the illness, constantly trying to test my limits and pretend I was just your normal everyday kid. It took me about a year to finally accept what I had and to work with Narcolepsy rather than to work against it. If I fight it my days are horrible; if I take care of my sleep schedule then narcolepsy is good to me and allows me to feel as normal as possible.
4. Does narcolepsy affect your social life? If it does then in what ways?
My social life is as normal as ever but I honestly have my friends to thank for that. Many of my friends at the time of my diagnosis stuck through and are still my friends to this day. They saw me at my worst, and saw how debilitating Narcolepsy can be without proper care. Often times we all nap together before going out, or they know if I say it is my bedtime they won’t fight me to stay up later. I suppose you could say my social life is affected in terms of how late I will stay out, or how long I will go see friends for. I however don’t think anyone would notice my social life lacking in anyway.
5. Is it difficult to work with narcolepsy?
Working is an issue for many…I have yet to run into any problems. I know my limitations and I pick my work strategically. I won’t work in an environment that doesn’t stimulate or interest my mind. If I am constantly on my feet and constantly needed somewhere than I find it rather easy to work 8 hours. However on the flip side, if the work isn’t interesting to me than I drift off into a rather sluggish mode just praying to nap somewhere!
6. Have you ever been discriminated for having narcolepsy?
I have yet to experience discrimination towards me due to my narcolepsy. The most I will receive is judgement on what I can and can’t do or sometimes people will even say I am lying. I have had coaches and parents of teammates question the truth behind my diagnosis. They all believed illnesses were in the mind and could be overcome if you don’t give into them…especially sleep! That kind of judgement towards narcolepsy really bothers me; I would love to see them feel the tiredness us Narcoleptics can feel at any given time.
7. Have you ever been excluded from any sort of activity for having narcolepsy?
I really don’t think anyone has ever excluded me because of my Narcolepsy. However when and if that ever does happen, it will only encourage me to prove them wrong.
8. What things on a day to day basis do you need to compensate for your narcolepsy?
On the daily I don’t compensate much, there isn’t anything I have to give up or avoid. Long distance driving is something I will never be able to do, but I don’t need to do it. When I was in high school I would compensate homework at times when I was way too tired to even think about completing it. I did end up finishing high school on time though and with good grades. Honestly, there isn’t anything in my day to day life that I need to compensate because of my narcolepsy.
9. When in a relationship (it doesn't have to be a romantic one) do you tell the person that you have narcolepsy?
95% of the time people know I have narcolepsy. I find no shame in it and often times people’s reactions towards hearing I have narcolepsy says a lot about the character of the person. The more interested a person is about learning the better. If someone blows it off and thinks it’s a joke or some fake illness, then chances are I won’t be hanging around the person for very long. I love answering questions about it to my friend and peers, I love educating the public. I don’t care if the person understands narcolepsy or not, I enjoy the people and admire the people who at least try to understand it. That’s all I will ever ask for.
10. Has narcolepsy affected your personality and your outlook on life?
I think my diagnosis forced me to grow up and mature a lot quicker. It gave me a new outlook on life…one that allowed me to be thankful for everything I do have. I believe that people are put through things because they are strong enough to handle it. I believe that this diagnosis gave me a chance to get my priorities in line and to be more positive about things. It was a wakeup call to better care for myself, but it also allowed me to find myself. I think after a year of fighting it I came to the conclusion that turning my Narcolepsy into something that was a good thing allowed me to be happier. I am thankful for such a young diagnosis because I don’t think my life would have stayed together much longer with the way I was living it.
11. Has narcolepsy limited your ability to achieve something you want to achieve?
If anything it has empowered me to achieve things; I now go after things in hopes of proving people wrong. It can be debilitating if you let it, and it can get in the way of some dreams but I have yet to find something it has limited me to do. When someone tells me I can’t do something, I usually go out of my way to prove them wrong and that’s how I feel about narcolepsy.
12. Has there been any hidden blessings with having narcolepsy?
I think my narcolepsy encouraged me to start writing; something I now love. Since sharing my life on my blog I have been blessed with meeting other narcoleptics around the world. I also have changed people’s perspectives on Narcolepsy and even inspired families that there is good in Narcolepsy. I don’t think there are as many negatives in Narcolepsy as the world portrays there to be. In any illness, being negative towards it doesn’t get you anywhere.