Shedding Some Light on the Invisible Disease... mega rant

Hello LWN-ers! I'm a relatively new member to this site, but I'm already completely blown away by the acceptance and support of this community...

I started this discussion because 2 days ago, January 8th, was my 19th birthday... As one of the .05% of people living with narcolepsy, i can't help but often feel isolated and misunderstood by the 99.95% of those who are not. I was diagnosed just this summer but I've been on this journey for what seems like forever.

Youtubing narcolepsy almost always resulted in outdated slideshows narrated by creepy, monotone, doctors all trying to be "hip" by using "groovy" slide transitions and forcing their viewers to endure painstakingly irksome elevator music... Well that and and about 12thousand videos of narcoleptic squirrels, and such.

But the other day without even searching for it, I ran across a video that, before i knew it, had tears streaming down my face. It was of a girl doing an instructional dance video but who's narcolepsy ended up kicking in, making it extremely difficult to get her job done. Watching this was like seeing myself for the first time. The falling, paralysis, confusion, frustration, watching as she fought her cataplexy... it was me.

It was after seeing this video, that i decided it was time to "come out of the closet"... or I suppose the more befitting analogy would be to "climb out of the bed". lol. Those who know about my condition, even to this day, remain incognaizant in regards to how severely this condition has impacted my life. I wanted to change that.

I made the choice then and there to share my story. That night I typed it all up, posted it on my fb wall (as well as the link to the youtube video), sat back and waited to see what would happen.

The response was unbelievable. My notifications blew up, people i hardly knew were commenting on my story, thanking me for sharing what i did. About 25+ people private messaged me with questions, opinions, and stories of their own.

I posted what i did because watching that youtube video, it dawned on me that it was one of the first truly honest depictions of what narcolepsy really looks like.

I am well aware of the fact that narcolepsy is not some sadistic, life threatening, i'd-start-writing-your-will-buddy kind of disease. Heck, my old boyfriend went through a year and a half of unadulterated hell in order for all the radiation and chemo to boot the rhabdomyosarcoma (cancer) from his system. So, trust me, I know worse cards have been dealt...

But just because we could have it worse does not in any means minimize the maximum suck factor that comes with being narcoleptic!!!

Narcolepsy is NOT just an excuse to be lazy. Narcolepsy is NOT funny. Narcolepsy is NOT easy nor is it simple. And lastly Narcolepsy is DEFINITELY NOT a choice... Living in a body you can't always control... the stigma... the misunderstanding. This invisible disease... it's about time people started shedding some light on it...

...I'm sorry I know this is a very lengthy shpeal, but brownie points to those who read this entire thing. =). Bellow I posted my story as well as the "What Narcolepsy Really Looks Like" video that I've been raving about. I would super duper love it if you all would read it or at least watched the video, I'm interested in learning your thoughts. Maybe something will strike a chord? Maybe you'll learn something new? Tell me your story, I'd love to hear it!

Peace and good vibes to each and everyone of you!!!

- sarahquinn2275

P.s: No i am not the Sarah in the video, ironically we just have the same name. lol. =).

Psst, this is the link -----> What Narcolepsy Really Looks Like.

I guess it's a Sarah thing. lol.

No but for real… A lot of you already know this about me but I saw this video and decided that it was a good way and a good time to officially put it out there… To tell you all in detail I'd have to write a pretty in depth autobiography but for now these are just the cliff notes...

I was an undiagnosed narcoleptic for about 6 years. Symptoms started around age 13. I would frequently fall (often getting really hurt) or "pass out". The majority of my middle school years were spent in the school nurses office...

By the time high school came around night terrors, sleep talking, and bat-shit-cray sleepwalking was my reality. The quality/quantity of sleep i had been getting was getting worse and worse. My grades went down the crapper, I had ostracized myself from the old friend group, and was in the slow process of maneuvering into a social circle made up of a bunch of nutty band kids (♥).

It was mid-sophmore year that the depression kicked in full force, how could it not? I was practically delirious from sleep deprivation and trying so hard to keep it together that it (ironically) ended up tearing me apart.

My parents and I could not get on the same page; the two of them would try time and time again to get me up and moving and yet I simply could not awaken. It was like I was literally tethered to my dream and nothing or nobody could get me up and functioning.

Junior year started out a bit shaky, but it was soon decided that I was to be placed in Brookfield’s alternative school… It had its up's and downs, but in regards to my education it was brilliant. The staff were incredibly supportive and the kids (well the majority of the kids), were surprisingly genuine, down to earth people. Unfortunately sleep (as always) was a major issue. Getting to school was hard… Being at school was hard.

But before i knew it I summer '13 had arrived. Camp family summer I felt more in my element than ever before. Don’t get me wrong it wasn’t all rainbows and sunshine, I would fall and feel crummy a lot of days but finishing up that summer (surprisingly still in one piece) left me with a sense of hope; faith, that i was stronger and more able than I had given myself credit for.

Unfortunately this state of mind was short lived. Senior year i got off to the worst start humanly possible. I was falling and falling more frequently making my anxiety levels sky high, panic attacks and brain shattering migraines common, but above all "passing out" and having to force myself over and over to shake it of and put on a “brave face” became a job within itself.

My head would get sooo foggy, concentrating was next to impossible, my hand writing got wonkier and wonkier. Dreams and wakefulness would blurring, I'd sleep for 15 hours and feel as if i'd only slept for one or I'd be up at 6 in the morning exhausted out of my freaken mind and still couldn't fall asleep. My body was out of my control and regardless of where I was, marching band, lunch, school hallways, mid-lecture there was no stopping the attacks from happening. All i could do was just lay on the ground medium-conscious, mortified by my own idiosyncrasy as people flurried around panicking, pitying, and all judge-y eyed.

I felt completely insane and would go into super hypochondriac-mode. I had no explanation for what was happening so my mind just kept jumping to all the worst case scenarios; tumors, aneurisms, seizers. But above all, what frightened me the most was the possibility that nothing was wrong… that I was just simply crazy.

Last year was hospital central. I did not attend school; instead I endured so much therapy that even a sane person would walk away a nut-job…

I was unable to graduate with my class.

When summer came my main focus was completing the school work I had to. Slowly but steadily i was getting shit done.

It was a typical day when my mom came across the term narcolepsy. Looking into it more and more everything started piecing itself together and sure enough, after being probed and wired up like an alien for 24 hours both the PSG AND the MSLT from my sleep study came back indicating narcolepsy.

For those who don’t know, narcolepsy is a sleep disorder in which a person’s sleep/wake cycles are all discombobulated, thus narcoleptics are frequently exhausted. A huuugggeeee misconception in regards to narcolepsy is that we sleep all the time. While this is true for some, a major factor of this disorder is that even if one issss sleeping it doesn’t necessarily mean we’re getting the riggghhhtt (stage 3/4 deep Non-REM) sleep that actually allows us to feel well rested upon awakening.

Also because our sleep is so screwy a lot of narcoleptics have major difficultys falling asleep. Trust me, it’s not fun, especially when you’re so exhausted you literally start having nightmarish “waking dreams”. (eek). But wait, there’s more!

Not all narcoleptics experience cataplexy, but the majority of them do, myself included. Cataplexy is a complete muscle paralysis, usually resulting in a full-on collapse. It’s much different than just falling asleep on your textbooks; it’s a full body muscle shut-down. (I call it noodling out). And get this; it’s almost always triggered by emotion and literally will anywhere.

Dad jumps out and say’s “boo” *conk*. Laughing at a funny youtube video *conk*. On the job waitressing at a retirement home *conk*. Waiting in line at shop-right *conk*… Get the gist?

At first I was happy; despite not being the most desirable of disorders (is there even such a thing? lol) I had finally had gotten a diagnosis. This is what I wanted, was it not? An answer, medical proof that I wasn't clincly insane? That's a good thing... right? But ever so slowly it started churning into something else… anger.

For 6 years I had been treated like a lab rat. CAT scans, MRI's, EEG's, EKG's, blood testing, ocular testing, cognitive testing, physical, neurological, and physiological evals, all performed by the "best" and “brightest” of New England's doctors and it was my own mother who solved the mystery!?!?! Props to her but all in all I found it really screwed up...

One would think that this is the part in the coming of age story where everything is suddenly so clear and the future so bright. "An answer, wha-hoo!" but in reality all it caused was hurt. All my friends were moving on to college, starting anew, and I was so far behind. While everyone else was getting their shit together i had spent 6 years working my ass off just trying to get out of bed.

I tried to get in the mindset of "glass half full" i really did… i just couldn't…

Late into the summer there was a period of 3 days (72 hours). And how many hours of sleep did I get during those 3 days? 4… 4 hours…

The next day I went to a pretty banging party, reassuring my parents I'd be okay.

I slept about 2 hours that night...

4 days and only 6 hours of sleep…

Getting home I was 12hundred percent done, and completely unhinged, without so much as a second thought I posted a horrendous suicide video, said a delirious farewell, and swallowed as much toxic crap that i could. I was still chugging when the medics came...

The next week was hell on earth, but luckily the hospital got me so drugged up I was able to conk out and get a couple nights of good sleep.

The following month or two... I don’t think there are any words capable of conveying how horrible everything had become. I had officially hit rock bottom, which is, when you think about it, is horrifying when you factor in how deep my bottom already was…

Believe it or not my prayers were actually answered in the form of my annual school PPT. Brookfield’s special education department, i swear, have wings on their backs and halo's atop their heads. Let me tell you, I happen to have a very... VERY long list of academic failures, and yet for some unfathomable reason my team never gave up on me. If plan B didn’t work then they moved on to C, and D, to E, F, and G… It was that very day plan H was set in motion.

It took a month or so but come November I was officially enrolled as a quasi-student at the Arch Bridge School in Bethlehem, CT. At this school we get a choice in the classes we want to take (no chem for me dudes! wha-hoo!). We spend a lot of time outside, and our classes are small (about 8 students max) In general it's a very zen, laid back environment. Yes, there is a big therapeutic aspect to it, but believe it or not it’s one of the best things about the place. Every Friday we do rando community service projects, along with all kinds of vocational readiness shenanigans. There are field trips, animals, composting (!), gardening, poetry, art, and above all else; a pretty majestic community of unbelievably friendly, and understanding human beings.

There are times I feel as though my life is some tragic-coming of age-family-romantic-comedy (minus the romance. Lol… well kind of.) I have yet to get my shit together, but it’s happening. One foot in front of the other, it’s happening.

These past few months have pretty much been the (much needed) reconstruction of my life. Today’s my 19th birthday. I wish I had more to show for those 19 years, but at the same time if these month's have taught me anything it’s that backwards is not the be all end all direction.

There is a forward.

There is a now.

I am awake.

Happy Birthday and thank you for sharing your story Sarah, I haven’t posted or even commented on any posts before but yours compelled me to. I am a 33 year old mother of 4, sufferer of Narcolepsy (without cataplexy) since 15…maybe before. I was diagnosed over a year ago and still struggling! I feel your pain, my partner has been through the last 3 years of treatment and surgery for brain cancer and yes even though we are not suffering like that, we ARE SUFFERING. My partner and children are what forces me to carry on each and every day they deprive me from that magical world of sleep I so desperately crave but they have saved me too. There are still positives to come for you dear girl. Don’t give up yet. xx

Hello Sarah,

Happy Birthday!!!

Welcome to the "club" :) Thanks for being honest and open.

I truly understand the "I'm DONE" with all the tests and doctor visits....short version the 6 bad Dr's "you're depressed, take a pill". NO, I'm not!!! I'm freaking passing out at work....

My 5th!!! sleep study Dr. said we can't diagnose narcolepsy because you're are on "psychotropic med's"... THEN why did you have me do another sleep study $$$$ ???

My daughter suggested I order my own Labs tests for another autoimmune disease I was dealing with. YES! That Dr. saw Both issues!

Count your blessings you had a rough time finding out But you found out early in life and you will be better able to navigate "life" knowing what is going on and what works for you.

Insomnia? I had almost a year of only 3-4hrs a night while I was working and that can bring you to the edge of crazy tired.

Thanks for joining us here! Somehow and somewhere there is a great blessing for you in this just look for it, please.


PS: Spent my summers in Westport CT with my dear grandparents growing up.

Your story is amazing and your writing is great, too. Your authenticity will help others understand.

I am trying hard not to cry right now....not out of pity...out of realization that I am not alone and that there are others that have had days just like mine. That are going through the same crap I have to deal with everyday. I am trying hard not to cry because for the first time in over a decade I am seeing that I might have just a glimmer of hope in these dark days. Thank you so much for sharing your story, I found it very connective and inspiring.

Thanks again.

Sorry for the late welcome Sarah ! I hope we will hear from you often here!

Wonderful story ! I'm so glad you received so many supportive comments to your FB

Hi Sarah!

I read your post yet again and realized that I could have PM'd you my story instead of posting it here, so I took it off cuz it was long and distracted from yours.

I'm really glad you got such a positive FB response. You probably helped lots of people by being honest and frank. Definitely takes courage and I'm glad others have appreciated that! Plus, narcolepsy and it's challenges are unknown to so many and more people need to know how it effects people in real life.