84 replies to this topic

[eww]

I'm a student and I've noticed a huge difference in the reaction of professors and the like that seems to be associated with their department. For example in my experience, the Neuroscience profs are awesome (and VERY curiously observant lol), the Psychology profs are confused but generally good about it (as long as it is clearly explained in physical terms ie neurotransmitter malfunction), the Anthropology/Sociology profs tend to be intrigued, helpful but confused. And unfortunately other profs tend to ignore it, or be (not-exactly-secretly-but-not-openly) judgemental.


^ was written a while ago but somehow got forgotten about (I wonder? lol) so it's being posted now as-is.

[Day Dream Believer]

Here are annoying things coworks have said to me:

1) I told you that already.

2) You look exhausted

3) You look tired and stressed

4) You are too intense

5) Maybe your not getting enough sleep (then when you tell them you slept 12 hours last night they think you are depressed).

[Gabby]

When you tell someone that you have been diagnosed with N they say:

You should just get more sleep and then you wouldn't have that.
If you wouldn't let your cats sleep with you..... It's their fault. (Huh? My hubby and I just looked at each other and started laughing)

[ce la vie]

Are you alright, you look tired(after seeing me 5 days out of 7 for the last year and a halve).Surprise!!!

You look stoned that drives me crazy, I just want to thump the person.

My boss thinks I am so dozy...If only they knew

My new favourite qoute: I am not stupid, I'm Narcoleptic.

[Marietta]

I don't have a job but...

"Did you lose your virginity and regret it?" God I hate this one.
"You got high not to long ago, right?"
"Admit it, you're hung-over!"

"Are you depressed?"
"Did you get enough sleep?"
"Maybe if you got out and did a little exercising this wouldn't happen!"

"That's still no excuse for falling asleep."
"Stop milking it."
"I grew up with Epilepsy so I'm not going to pity you or treat you special." Gee, thanks dad.

And on top of all this, I'm a weak bodied person until I get myself into a fight (and I still collapse right after one).
I can't do much of anything to begin with. I hate it when people try and make me do things I can't do in order to help me get past my N.
When in reality, they are treating me harder than everyone else because I'm an N. I hate that, trying to seem fair by treating my worse than everyone else. Jerks.

[sometimes]

"I wish I had narcolepsy."

"He gets to take Provigil."

"You gotta get off Ritalin."

"How much for a Ritalin?"

"Maybe you don't sleep enough at night....I have a friend with narcolepsy and she got into a car accident and she fell asleep and fell down a fight of stairs." -someone at my insurance company apparently referring to a scene in the movie "Deuce Bigalow"

"..obviously doesn't have narcolepsy."

"Did you sleep well (last night)?"

[blahblahkathy]

The Top Five Dumb Things People Say To Me About Narcolepsy/Cataplexy:

1. " Are you okay? You look like you're sick"..... or "You look like you stayed out too late last night" (Co-workers) I usually reply to this with, "Gee thanks, you look like crap too."

2. "If you slept more at night, then you wouldn't have this problem." (Co-workers)

3. "If you'd get a C-PAP machine, then you wouldn't have these problems." (This one REALLY annoys me, because I have a co-worker who has sleep apnea and she does not seem to grasp that narcolepsy is not treated with C-PAP, unless you ALSO have sleep apnea. She also tries to tell me that cataplexy has nothing to do with narcolepsy, since she has sleep apnea and *she* doesn't have cataplexy. For the love of God, they are not the same thing!)

4. When I go into cataplexy....."Oh Kathy fell asleep again." (Friends) (No matter how many times I tell them that I am not asleep, nor have I fainted, they cannot seem to grasp the concept.)

5. After I went into cataplexy in front of a superior/co-worker who knows that I have Narcolepsy......"Do you know how stupid you look when you do that?"

[catnapper]

I want to go back to work, but I've been fearful of being accepted. I guess I was right to worry. Prior to developing severe N/C, I was a workaholic teacher with an intense work ethic. In my mind, I'm still that same person with the strong work ethic. However, I know I can't display it as well with my current symptoms - - most especially the sleep attacks and cataplexy. Accustomed to overachieving and being a perfectionist (I know, bad combination), I'm not sure how I can handle all the ignorance and judgmental behaviors from coworkers. I'm terrible at accepting &/or dealing with criticism. My response is going to be to try to educate (explaining REM and hypocretin loss) but I can already imagine everyone laughing, if not at me then behind my back. Can I develop a thick enough skin to go back to work......?

[blahblahkathy]

Of course you can! Judgmental people are just going to be judgemental. If it wasn't your narcolepsy, then it would be your haircut, or the car you drive. What other people say may be annoying, but you don't have to let it hurt you. If you know that you are doing the best you can, then just let that fact give you peace of mind. I'd say you'd have one up on alot of people who work because you know you're giving it your best. Plus, you can always think of it this way: If your co-workers had to spend one day feeling as tired as you do every day, they'd probably quit, cry, or get absolutely nothing done. And look how much you've gotten done today:)

Some people will surprise you with just how understanding they are about this. And some people are going to be jerks. That's just life.

[flutterbye_xo]

I LOVE this section about what people say to you. I always get "Good morning princess, glad you decided to finally join us" and my parents just looove to tell everyone about the drool-stains on the living room chair. Oh yeah, I'm the butt of every sleeping joke I know and some I don't. Everyone at school likes to wake me up nomatter where I'm sleeping and take pictures of me in class sleeping. One time I fell alseep on a lab bench chair in the front row looking straight at the professor. I usually fall asleep looking straight at them; makes me feel slightly better. Anyway, I'm ALL about the positive so I loved this section, especially the necrophillia one...haha.

Kinda funny story. I often get cataplexy right when I'm semi-falling asleep and decide in my mind I MUST get up and lock the door now. I get up, fall down, and then lock the door! For some reason this is funny now. So one time this happened and my significant other happened to be there. He thought I tripped on his backpack and I just let him think that. I was worried because I didn't know what cataplexy was and I didn't want him to think I just fell down and hit my head on something because of nothing. Oh and get this he wants to go to a Haunted House next month. I'm like sure if you want to carry me through it...bahaa.

[Naptime?]

How about " I hope you clocked out before you fell alseep" --- really clock out? i can barely make it back to my desk!

Or the "maybe you should lose weight or work out" -- if i could, i would love to.



People at my job think i am lying about my disorder because i dont fall down, and i am only 25. i would give anything to not have this and my tiredness just be from lack of sleep!

[Lucestrife]

Perhaps I'm not making the world a better place with my responses, but when people say doltish things out of malice instead of ignorance I tend to hand it right back to them. Here are my stock responses to the most common ones you've mentioned:

"Look who decided to show up!"

If you applied a tenth of the willpower it takes for me to get up in the morning to filtering your own ignorant comments the world would be a better place.

"Are you stoned?"

No. I don't do drugs, except the industrial-strength ones I need to manage my disability. Hey, thanks for reminding me of that.

"Well, if you decide to show up to work on time, maybe you'll get a raise"

Well if you insist on making this about your failure to accommodate instead of my work performance, perhaps it's time to consult the federal laws protecting people with my condition, which you obviously haven't read.

"Who's the new person?" (after being out a day)

Ha! That's hilarious! I'm glad that constantly remarking on my disability can be such a source of pleasure for you all.

"Yeah, I'm tired, too" or "No one likes getting out of bed to come to work"

Oh yes, I'm sure you can relate to missing critical neurochemical pathways. Or I guess actually, in your case, it's just the luxury of feeling slightly uncomfortable. Poor you.

"Maybe you should go to bed earlier"

Oh I can sleep for days. Maybe you should read a pamphlet or something.

"You should take some vitamins"

Oh, well thank you Dr. ___. I'm sure that my team of doctors will be fascinated by your input.

"I'm sooooo tired, you don't even KNOW"

No. You don't even know. One study showed that on average a normal person like you has to stay awake for three days solid without pharmaceutical aid to understand what I feel like every moment of the day. So you really have no idea, unless you want to talk to me about that time you were up for three days straight?

--- I know, not very nice, but seriously it's as though these people are stuck on stupid. Never mind a fundamental lack of experience with ethics or anthropology, these people don't have basic human empathy. The worst ones are the people who are soooo sure that they're right and all science is wrong. They're like religious zealots who don't realize how wretchedly heretical they're acting by claiming to know the mind of god.

I had to address these ones also because they're just so mindblowing:

"Did you lose your virginity and regret it?"

Whaaaaaat? Do people seriously ask you this question?! In public?!? Not only is that serious sexual harassment but just in the poorest possible taste. No one I know would stand for someone placing them in that position. I'm so sorry about Texas.

"That's still no excuse for falling asleep."
"Stop milking it."

These are also unbelievable. Narcolepsy is the definition of a good excuse. You literally can not control it. When it comes to dealing with people like this, the best tactic I've found is to kind of act like they've passed gas. Just be really embarrassed for them, and very slowly explain to them how the world works. "No, you see, that is actually what narcolepsy means. My brain excretes a chemical that causes me to fall asleep wherever I am and whatever I'm doing. It's not like I do this for kicks. People with this condition literally can't control it. Do you understand? I know this is a hard concept for some people to grasp."

"I grew up with Epilepsy so I'm not going to pity you or treat you special."

Wow! Just wow. Extra special, that one. I would maybe cite the Scandinavian medical committee (Finland? Sweden? Or it might have been Europe proper...Dutch? I'm sure you can find it) that rated Narcolepsy as being more debilitating than Epilepsy and Paranoid Schizophrenia (!) combined (!!).

I guess we all fall prey to the fact that most people are just base animals who take pleasure in kicking at anything that may appear weaker or different.

I'm sure it wont be a popular opinion, but I have to share: I've lived all over the country, and I grew up in Southern California. There are massive cultural differences between different parts of the U.S. and they can influence your quality of life in a big, big way. My family was not supportive or decent, so I left them behind and built my own family of caring, supportive, informed, empathetic people. I'm closer to them than I have ever been to my biological family, and we have wonderful holidays and reunions. I also found the places where I am most comfortable with the culture and how people treat each other, and I plan to move to one of those places after grad school. It is the best thing that I have ever done for myself, and I have never looked back.

Thanks for letting me rant!

Luce

[sk8aplexy]

After trying to explain what cataplexy does and how it occurs, I'm given this response:
"I can relate, that happens when I'm drunk..."

[anneominous]

Lucestrife, I just want to say that I adore your responses! I plan to use them if I ever get a doctor to believe me and diagnose me. Even though I don't have a diagnosis yet, I actually get a lot of these comments all of the time. Been isolated from people in general for over 10 years now, so it's less frequent thankfully. It would be nice if people could apply more observation and attempt judging your character rather than leaping at a poor understanding of a serious affliction.
Speaking of, I wanted to add something from the point-of-view of someone waiting on a diagnosis:

"Narcolepsy?! You don't want narcolepsy! You won't be able to drive and you'll sleep all of the time!" *Edit: I already don't drive anymore and sleep all of the time!

Yeah I hear that, or something like it, quite often. It's like I have a choice or something lol. Some more favorites:

"You don't have narcolepsy. You've never fallen asleep suddenly while we're hanging out. You've also never displayed any sign of cataplexy... not once have I seen you fall over paralyzed"

"If you want to be on uppers, I can just sell you some"

The most common ones I heard before were take vitamins, workout/exercise more, get more sleep (lol), don't stay up late, stop being lazy, eat healthier, etc etc. I still hear those often, but then I tell those people that I tried all of these things for long amounts of time and my symptoms have still been steadily getting worse. They either shut up or say it's probably stress, anxiety, or depression. UGH!!!

[N50+]

As I was arriving at work one morning at 8:45 (I usually arrive at 7:45) and the big boss just happened to be in the lobby with my boss, and the big boss says, "You might think about re-setting your alarm clock." Is that all it takes, WOW!!

[Fluffybunny5000]

I was actually given a month of FMLA to go get this seen about and when I came back to work I had a big red target on me. I was fired 2 weeks later for missing time PRIOR to the FMLA incodent. It was a post dated in junly write up for the day before i passed out at work when i had done the same thing AT HOME and was 3 horus late for work. and I was terminated October 13th! I came back from FMLA on august 25th and for awhole month everything was fine. I worked 13 double shifts and only missed 3 days at the end of october. was actually sent home for having the flu and told not to come back until the doctors said i wasnt contageous ( i work in a prison) and when i came back 2 weeks later i was in the wardens office.

Funny things that were said
"yeah me and my doctor are pretty cool too, you dont think if i just want a couple of days off i cant just get him to write me a note too?" - A CHIEF
"Were just seeing a pattern here and you have no respect for our attendence policy" - The warden (i've got more time with the company than he does... and prior to last year i was 100% attendence 4 out of the 5 years i've worked here.. I have the badges, pins and certificates to prove it)
"Please explain to me why you missed this time and have trouble coming to work on time" and after i explained the medical condition "I've just heard a lot of excuses here" - warden (so why did u ask for them????)

There were so many things that were said.. but needless to say I grieved the situation, got my job backa nd got a free 3 week paid vacation because they took their time turning over the unlawful termination. I mean seriously.. send me to go get help.. and when i get it and come abck you jsut stab me in the back like that? wow! But it is difficult for people to udnerstand

[HeatherP]

"I'd love to take a nap every afternoon.... maybe I have narcolepsy, too!"

[Fluffybunny5000]

Hey! Glad you made it. Just get here when you can

[AYCV]

I love my sister dearly, but when I tried to talk to her about how I've been feeling and what the N. has been doing to me she said, "don't give it that much credit"....like there must be some other reason that I feel the way I do. Like all I have to do is figure out what my real problem is and I'll be all fine and dandy. I notice that I talk less and less about it to family/friends b/c they all look at me like I'm a nutball. Easy to see how one becomes isolated.

Yup exactly how I feel..............very isolated..............I don't want sympathy...........I'm not physically hurting.........I'm not ignorant or stupid.............it might be the other way around.

[AYCV]

Here are annoying things coworks have said to me:

1) I told you that already.

2) You look exhausted

3) You look tired and stressed

4) You are too intense

5) Maybe your not getting enough sleep (then when you tell them you slept 12 hours last night they think you are depressed).

1. You look sleepy.
2. Are u alright? You don't look so well.
3. Do you want some coffee?
4. Are you sure your ok?
5. Did you go out last night.............
If they only knew for one day to be in our shoes..................