(no subject)
Long time, no post, eh? There are many things I could post about, some cheerful, some frustrating, some confusing, some amusing, some infuriating, but the number of choices after this long a break are overwhelming. Therefore, I'm going to write a post I've been meaning to write for a while.
First, though, because my explanations are not always clear or concise, here is the most informative article on idiopathic hypersomnia (also legitimately referred to as idiopathic hypersomnolence) that I've found on the Internet to date. It's pretty short, but sums up things well and covers most aspects of the disorder.
I don't have a problem when I'm telling someone about how I got caught in traffic and the person next to me had their window down with their cigarette practically hanging in my window but I couldn't roll up the window because it was ninety degrees and my A/C doesn't work and they respond with 'I understand' or 'I know what you mean!'. Even if they have never been in that exact position, I understand what they're trying to say is 'I empathize with that', generally.
So when told that you shouldn't tell people you understand when you don't, I've always believed that it depends on the circumstances. It's ok to say that you understand if it's understood that what you mean is that 'I understand the words that you are telling me, and I'm listening'.
You're just waiting for the 'but . . .', right? Here it is. I have lost all tolerance for 'I understand' or 'I know what you mean' when talking about something that is marginalizing and personal. It's insulting and angering. It's so different from someone telling me they know what I mean when I'm bitching about my break-up with my boyfriend. More different than I had previously thought, and it's made me much more careful about using phrases like that.
Let me elaborate through example.
An annoying man who preached for a month when my dad was gone a few summers ago came to visit our house. I wasn't feeling terribly anti-social, and I wanted a drink, so I walked past them at the table. Unsurprisingly, I did not get to take my drink back to my room, rather, I was caught by my mother with a 'why don't you sit here with us for a moment'.
So I sit and drink my soda. The man has somehow gotten on the subject of medical matters, specifically our problems with our health insurance. So, inevitably, my mother is attempting to explain the sleep disorder.
I pitch in occasionally, and eventually mention how difficult it is not being able to drive.
Because like 90% of people, he hasn't grasped the concept of 'I fall asleep uncontrollably', he asks why I can't drive. (Seriously, is it that hard to grasp? No!) I give a brief anecdote about the whole 'oops I fell asleep' while driving thing.
He replies with, "Oh, I do that too!"
He then regales us with tales of how he always falls asleep while driving because it's so sleep inducing, I know what you mean, &c &c. Then he proceeds into how he drives anyway though, even if he shouldn't, haha.
I wanted to slap him across the face.
Don't tell me that I could just 'drive anyway' because you, a man with no sleep disorder, do all the time when sleepy. Really. Don't tell me that. I want to drive. I'm frustrated enough with the knowledge that it's a stupid idea and I shouldn't do it without someone trivializing and dismissing both that specific issue and my disorder.
Another example.
World of Warcraft. Late evening. I say I need to go to bed.
This is met with, 'Oh, we all need to go to bed, but who does that?'
I say that I honestly need to go to bed, and that if I don't, I'm just making everything worse.
This nineteen year old kid tells me that 'he has to work in the morning too, and he'll be tired too, who cares'.
I lose patience and snap something about the sleeping disorder -- I tend not to do that, because the response is always atrocious. As it was in this case.
He tells me, "Maybe you just sleep too much, you know? They say that that can make you as tired as not sleeping enough."
Yes, Kree, you, a nineteen year old boy, know more than medical professionals who have analyzed my sleep and can clearly solve my problem by dismissing it as valid. I did not tell him to go to hell. I was not nice, either, but that wasn't new, and I escaped.
I felt frustrated for days by this. Can I not tell someone that I have this problem without them trying to explain it away or equate it with their own experience?
You see, even if you fall asleep while driving or fall asleep during class, your ability to then be wakeful the rest of the time is not something I should just toughen up and copy. I cannot do that. You do not, in fact, know what it is like to constantly fight sleep. Not often, not regularly, but constantly. Lots of people fall asleep in class occasionally or even frequently -- I don't mind comparisons on this isolated phenomenon, actually, but I mind it when people imply that since they also fell asleep in class but do not fall asleep at other times, I should then just be like them.
You see, I have to deal with the fact that this thing is not curable and that it will last my entire life. I have to deal with my daily struggles for hours to not sleep and either failing or failing to be able to do anything with that time besides work to not sleep. I have to deal with knowing that I cannot, at this moment, feasibly work a full-time position.
You don't understand. It's not something you can understand unless you have the same problem. You can remember days in the last years in which you have not been tired or sleepy. I cannot. This is not an exaggeration or melodrama, it's true. I cannot. I can remember days when I managed to push it aside and act like a normal person, and days where I was relatively not sleepy. I do not, however, remember a time when sleepiness was not a problem since early high school and before.
I'm not angry, and I appreciate people attempting to empathize with me. I can interpret intent fairly well, and try not to snap when people are genuinely trying to understand rather that 'fix' or dismiss. Thank you, anyone who does so. I appreciate it. I hate talking about it. I like to think of myself as a fully functional twenty-something young adult, and the harsh fact that I am not is hateful, honestly.
Even my father sometimes forgets that I might be sleepy, or is skeptical of the seriousness of the problem. Listen, if I became lame in one foot because my toes got crushed by machinery, no one would be skeptical. I don't like drawing extra attention to myself, especially negative attention, so why the hell would I make up something that constitutes frequent misery for myself? Your skepticism is lacking in logic.
Now that I've ranted and gotten that out of my system, I'll cease with medical concerns, hah. Oh, btw, I'm just waaaaay too lazy to edit out second person references, so for clarity, the accusatory 'you' is not aimed at anyone reading this, lol, just that non-existent general 'you'. No worries :)
First, though, because my explanations are not always clear or concise, here is the most informative article on idiopathic hypersomnia (also legitimately referred to as idiopathic hypersomnolence) that I've found on the Internet to date. It's pretty short, but sums up things well and covers most aspects of the disorder.
I don't have a problem when I'm telling someone about how I got caught in traffic and the person next to me had their window down with their cigarette practically hanging in my window but I couldn't roll up the window because it was ninety degrees and my A/C doesn't work and they respond with 'I understand' or 'I know what you mean!'. Even if they have never been in that exact position, I understand what they're trying to say is 'I empathize with that', generally.
So when told that you shouldn't tell people you understand when you don't, I've always believed that it depends on the circumstances. It's ok to say that you understand if it's understood that what you mean is that 'I understand the words that you are telling me, and I'm listening'.
You're just waiting for the 'but . . .', right? Here it is. I have lost all tolerance for 'I understand' or 'I know what you mean' when talking about something that is marginalizing and personal. It's insulting and angering. It's so different from someone telling me they know what I mean when I'm bitching about my break-up with my boyfriend. More different than I had previously thought, and it's made me much more careful about using phrases like that.
Let me elaborate through example.
An annoying man who preached for a month when my dad was gone a few summers ago came to visit our house. I wasn't feeling terribly anti-social, and I wanted a drink, so I walked past them at the table. Unsurprisingly, I did not get to take my drink back to my room, rather, I was caught by my mother with a 'why don't you sit here with us for a moment'.
So I sit and drink my soda. The man has somehow gotten on the subject of medical matters, specifically our problems with our health insurance. So, inevitably, my mother is attempting to explain the sleep disorder.
I pitch in occasionally, and eventually mention how difficult it is not being able to drive.
Because like 90% of people, he hasn't grasped the concept of 'I fall asleep uncontrollably', he asks why I can't drive. (Seriously, is it that hard to grasp? No!) I give a brief anecdote about the whole 'oops I fell asleep' while driving thing.
He replies with, "Oh, I do that too!"
He then regales us with tales of how he always falls asleep while driving because it's so sleep inducing, I know what you mean, &c &c. Then he proceeds into how he drives anyway though, even if he shouldn't, haha.
I wanted to slap him across the face.
Don't tell me that I could just 'drive anyway' because you, a man with no sleep disorder, do all the time when sleepy. Really. Don't tell me that. I want to drive. I'm frustrated enough with the knowledge that it's a stupid idea and I shouldn't do it without someone trivializing and dismissing both that specific issue and my disorder.
Another example.
World of Warcraft. Late evening. I say I need to go to bed.
This is met with, 'Oh, we all need to go to bed, but who does that?'
I say that I honestly need to go to bed, and that if I don't, I'm just making everything worse.
This nineteen year old kid tells me that 'he has to work in the morning too, and he'll be tired too, who cares'.
I lose patience and snap something about the sleeping disorder -- I tend not to do that, because the response is always atrocious. As it was in this case.
He tells me, "Maybe you just sleep too much, you know? They say that that can make you as tired as not sleeping enough."
Yes, Kree, you, a nineteen year old boy, know more than medical professionals who have analyzed my sleep and can clearly solve my problem by dismissing it as valid. I did not tell him to go to hell. I was not nice, either, but that wasn't new, and I escaped.
I felt frustrated for days by this. Can I not tell someone that I have this problem without them trying to explain it away or equate it with their own experience?
You see, even if you fall asleep while driving or fall asleep during class, your ability to then be wakeful the rest of the time is not something I should just toughen up and copy. I cannot do that. You do not, in fact, know what it is like to constantly fight sleep. Not often, not regularly, but constantly. Lots of people fall asleep in class occasionally or even frequently -- I don't mind comparisons on this isolated phenomenon, actually, but I mind it when people imply that since they also fell asleep in class but do not fall asleep at other times, I should then just be like them.
You see, I have to deal with the fact that this thing is not curable and that it will last my entire life. I have to deal with my daily struggles for hours to not sleep and either failing or failing to be able to do anything with that time besides work to not sleep. I have to deal with knowing that I cannot, at this moment, feasibly work a full-time position.
You don't understand. It's not something you can understand unless you have the same problem. You can remember days in the last years in which you have not been tired or sleepy. I cannot. This is not an exaggeration or melodrama, it's true. I cannot. I can remember days when I managed to push it aside and act like a normal person, and days where I was relatively not sleepy. I do not, however, remember a time when sleepiness was not a problem since early high school and before.
I'm not angry, and I appreciate people attempting to empathize with me. I can interpret intent fairly well, and try not to snap when people are genuinely trying to understand rather that 'fix' or dismiss. Thank you, anyone who does so. I appreciate it. I hate talking about it. I like to think of myself as a fully functional twenty-something young adult, and the harsh fact that I am not is hateful, honestly.
Even my father sometimes forgets that I might be sleepy, or is skeptical of the seriousness of the problem. Listen, if I became lame in one foot because my toes got crushed by machinery, no one would be skeptical. I don't like drawing extra attention to myself, especially negative attention, so why the hell would I make up something that constitutes frequent misery for myself? Your skepticism is lacking in logic.
Now that I've ranted and gotten that out of my system, I'll cease with medical concerns, hah. Oh, btw, I'm just waaaaay too lazy to edit out second person references, so for clarity, the accusatory 'you' is not aimed at anyone reading this, lol, just that non-existent general 'you'. No worries :)