Guest Post: Dear Katie (A Teenage Narcoleptic)

by julie on November 8, 2013

terrie and katieGuest post by Katie in response to the “Dear Diagnosis” Blogathon prompt. Read more letters and join us here.

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Dear Katie,

Today you will be diagnosed with a sleeping disorder.  Though you feel it is obvious that you have Narcolepsy, do not get upset that you are diagnosed with having Idiopathic Hypersomnia; trust me, it won’t be long before you wish you could go back to the start when things only felt complicated.  You will get diagnosed with having Narcolepsy without Cataplexy fairly soon.  Your Narcolepsy is going to continue getting worse as you age.  You will go through many, many different medications in order to try and find the one (or two) that help. 

Though you feel as though your Narcolepsy is already pretty bad, trust me, it isn’t.  Give it about a year or two and you will understand.  You will end up having what is called “Status Cataplecticus” which is a prolonged sleep attack.  It will last five hours and by time it ends you will end up in a mental institution.  Don’t bother trying to make a deal with the doctor, she isn’t going to let you go home if you take her meds; save yourself the trouble and tell her that you are no longer depressed and do not need anti-depressant medications and she should be talking to someone else because she is wasting time.  You will feel like you are locked up and going insane, but just wait.  Of all people, your older brother will be the one who brings up Cataplexy.  That is when your mom will realize that that’s what happened.  She will talk to your doctor, who will end up reassuring you that you are not crazy!  He will also be the one who ends up getting you out, when he says that he is going to come up there to talk to the doctor himself.

On the bright side, you will not have another five hour long sleep attack.  However, you will continue to have shorter versions of them.  They will last anywhere from a few minutes to about an hour and a half.  You will constantly feel like nobody understands what you are going through, because at this point in your life, your Narcolepsy is worse than your mom’s.  Don’t worry though.  You will soon make a video on YouTube talking about your attack and showing recorded footage of it. (YouTube video called ‘Status Cataplecticus’) This will show you that you are not alone, no matter how it may feel sometimes.  People will thank you for making the video and posting it.

                  Just a heads up; you are going to have a sleep attack while hanging out with a guy that you call your boyfriend for a while.  I know you might think you are in love with him, but trust me honey, you’re not!  You deserve better and need to be with someone who will not treat you like he did.  You will thank a girl named Amy who was at the house with you guys for making him stay outside after he does things such as slap you, put ice down your shirt, and attempts to pry your jaws open.  You will feel as though if it were not for her, it could have ended up a lot worse.  You might as well save yourself the trouble and heartache, tell your amazing mom that you know why she worries all the time, and break things off with him before this happens.  Trust me, you aren’t going to die.

                  Last but not least, at some point in your time of Narcolepsy, you will find out that your amazing sleep doctor, the one who diagnosed you, the one that got you out of the mental institution, and the only one that you felt you could trust… he is going to be moving to his office in Atlanta and not coming back.  You will end up seeing the doctor that your mom normally sees.  Though you are not fond of change, trust me when I say this, he will help you.  He will be the one to put you on medicine that will make it to where you do not feel as though you are dreaming all day.  So before you shoot him down, give him a chance.  You will actually grow to like him as your sleep doctor, even though you miss your first one.

                  I hope you take this letter to heart and keep it in your thought as you grow.  I hope you believe everything I tell you in the letter, because by doing so, you will save yourself a lot of stress and heartache.

Trust me,
Future You.

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Read Terrie’s Letter (Katie’s mother)

{ 4 comments… read them below or add one }

Terrie November 9, 2013 at 7:42 pm

Thank you Katie for sharing your letter. You are such a brave young girl. I have watched you go through this process over the last 3 years and it has really been hard as your mother. I’ve said it before that we are in a learning process of how to live “normal” as a teenage narcoleptic. I know it’s not easy for you because you think you have to give up so much of your freedom but in reality you just have to learn your limitations. Narcolepsy is what we have. It doesn’t have to be who we are or what we want to become. You are an inspiration to me as well as many others by being so open about your narcolepsy. Keep up the great work of educating others about this.

Love,
MoM

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Chris November 10, 2013 at 2:04 am

Great job explaining this condition. I know you’ll help others with your situation. The good thing is, that mom and daughter both have it. Not that having narcolepsy is good for you, its that you both have someone close to you that really understand more than most. Love you both.

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Katie November 11, 2013 at 1:59 am

Thanks, Chris. It really does help me out that my mother has narcolepsy as well. I wouldn’t wish this disorder on anyone, but I thank God that somebody so close to me has it so that I know I am not alone.
We love you too!

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Katie November 11, 2013 at 2:00 am

Thanks, mom. I will probably have to ‘learn’ for the rest of my life just because of how bad it is getting, however, I can not wait until it decides to level off for a while.
I love you.

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