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Sister Just Doesn't Get It

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So, this has been happening since I was 16 (diagnosed at 15 and currently 19).

My sister keeps on saying she's gonna "beat me" each time I get tired in public or have the need to sit down because I'm otherwise gonna fall down.

I'll admit, i don't have Narcolepsy as bad as some people do. I'm generally fine if I take my medication. But, i'm human, so i sometimes forget to take it.

One day we went out to eat with our grandmother and after eating, I started nodding off and I heard her say something about beating me because she's tired of how I'm "acting".

She seems to think I"m either faking or blowing it out of proportion.

Well damn, sorry I'm not as healthy as a horse like you and our mom (was at one point, now she's having old people problems). Sorry I inherited petit mal seizures from our dad, be thankful I didn't inherit gand mal seizures and Epilepsy from him. Be very thankful you don't have anything wrong with you.

Sorry I inherited everything you didn't, like brains from our father, looking like our mother, looks from two of our great-grandmothers (they were Indian, so my skin is dark as is my hair), common sense from our paternal grandmother and father, and Narcolepsy from or maternal grandmother.

Sorry I won the looks and brains lottery and lost the health lottery. By the way, what I mean is that not only do I have Narcolepsy, I also have Cataplexy, sleep paralysis, hallucinations, excessive daytime sleepiness (even when I take my meds).

Plus unrelated (I think) things like Photophobia, Phonophobia, smell sensitivity - all of which trigger Migraines or headaches. And I'm OH SO SORRY that YOU feel the need to leave all the lights on all the time, yell everything, and spay a large variety of things that make me want to bang my head against something hoping I pass out.

And that I'm easily exhausted in general. And that the only way I can over-come that is through blind rage (lots of experience with that in school, sadly).

What the moron doesn't realize is that the more mad she makes me, the more my Cataplexy is triggered and when that happens, I also get very tired. She doesn't seem to get it through her thick skull that I'm sick and while i try to make sure I'm not sick all the time, I still have good days and bad. Some days I'm feeling great. Most days I'm not.

I just needed to vent about this. She's not gonna get it, she's too damn stubborn. That's one thing she got from my dad, that's for sure. My mother is willing to cut me some slack because she feels bad for always getting onto me about falling asleep, or falling down, always having stomachaches as a child (which were probably migraines) and me having to force myself to get out of bed when i couldn't move a finger. Because, you know, it was out of my control. So my mother understands for the most part.

But my sister and my father? Totally unforgiving.

My sister just doesn't understand and my dad had Epilepsy growing up and he never got cut any slack so he's not gonna cut me any either.... even though they're totally unrelated (oddly enough, he was worried about that while I was being diagnosed, that it was his fault I had it).

I don't pretend to understand their logic sometimes. With my sister, it's more jealousy than anything. For whatever reason she thinks I get out of work because I'm "too tired" even though I always do the work, I just do it later.

She thinks I'm just being lazy and how it's not fair that she has to do work... funny, considering I'm the one who does the heavy lifting when no one else is small enough to get into certain places (like the attic), cleaning, folding laundry, has a *BEEP*ing job and pay rent, dusts, vacuums. She don't do jack *BEEP*. Wait, sometimes she cleans her room...

Meanwhile, I get in trouble for not cleaning my room and I get in trouble for messes that are not mine. It may be my stuff, that doesn't mean I tossed it on the floor.

She doesn't understand that I'm sensitive to weather changes - esp. after this one time when we were on a trip and all of a sudden a migraine hit me because I think there was a tornado close-by or something. Then she acted like it was my fault we had to stop so i could eat and take some medicine. And when it's hot outside, the sun beats down on me and I will get dizzy and my vision will blur, at least until I get into the shade. And since, you know, we live in Texas and the weather is over 100 lately, it really takes a toll on me so SORRY I can't be your own personal driver for you and your friends while you constantly *BEEP* and criticize me and my driving while doing so.

Maybe it also has to do with that ONE TIME where I had a small attack while driving so I had to stop and let her drive. Technically, we were breaking the law but I didn't have much of a choice other than to let her drive back home. It was either that or pull over and let me sleep for two hours and let me come out of my sleep-induced haze for an hour. So I had to get home to lay down.

Ugh, there's more I'm sure. But basically, I can't function like most people do. My legs are weaker, I can't take the cold or the heat, I have migraines and/or headaches every day, I'm tired all the time. Believe me, if I could change, I would. But I can't.

No, it's not my diet, no matter what you people think. Forcing me to not eat many calories makes me worse. I need to eat more calories or I get really bad headaches, just like my dad. If that makes me a fatass, fine. For whatever reason, my Topamax (or however you spell it) doesn't work as well anymore. The only thing it does is make sodas taste nasty now.

Sorry you hate my looks, body, health problems, schizoid behavior, and everything else about me. And pretty much deny everything that's true about me, like being sick, that I like to dress this way, that I'm good-looking and I don't need to plaster my face with make-up. And how you insult me on a daily and constant basis over the smallest little thing like how I choose to wear glasses... really.

What a *BEEP*.

/end rant

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I am sorry this is happening to you. I would get a book called Boundaries or research that word and learn how to make some tough strict boundaries for your sister so she cannot harm you anymore in this way.

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Something that I have found to be affective, especially for those who think shaking me awake/yelling at me is the appropriate response to my disorder:

"If a solution that simple could eliminate my disorder, what possible excuse could I have for not implementing it?"


"If shaking me awake or yelling at me were enough to make me better, I'd have an odd social quirk, NOT a neurological disorder. Please learn the difference."

However, if the true issue is a lack of empathy (not cutting you slack) or a lack of maturity (letting jealousy blind them into not empathizing) sometimes the best thing to do is acknowledge the lack of maturity and/or empathy. I know the empathy thing can be difficult, as my mother fails to this day to conjure the ability of empathy (esp. related to illness).

"Right, you're going to beat me down, because when I'm having a sleep attack's the only time you'd be able to get away with it." (This one would work on my sister, maybe not yours.)

"Didn't people treat you like this when you were a kid because of your epilepsy? Didn't it make you feel like dirt? ...if so, why are you repeating their behavior? Is your goal to make me feel the same way? All because of something I cannot control?"

Or, simply put, "I am disappointed in you." This works well on people who tend to be very defensive. Either they will distract themselves with a rant about how you have NO RIGHT to be "disappointed" in them -- which is what my mom would probably do -- OR they will be put in a situation where they are forced to look at what they are doing, which is picking on someone who is ill. Which is always lame, in my opinion!

Namely, though, I do my best to write it off with humor. Life's too short to be angry with everyone all the time -- so sometimes I'll laugh even when it hurts because it helps it go by faster.


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omg, I had a jerk of an ex husband who would scream and cuss at me when I couldn't wake up. He almost always threw me into a cataplexy attack and then get more angry when I didn't respond at all. It was horrible! So glad he's gone. So sorry that's happening to you. There may come a time when you have to say're making the problem worse. If you don't stop, I can no longer be around you." I know it sounds cruel, but it's no where near as cruel as what sis is doing to you. :)

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