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Topic: Do we need their sympathy? (Read 686 times) |
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notseinfeld
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Do we need their sympathy?
« on: Sep 21st, 2004, 9:49pm » |
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It's a harrowing thought but sometimes it does feel as though my effort for explanation of the extreme pain a CH sufferer goes through falls on deaf ears. Even folks who I think can at least 'relate' to the pain perhaps having a kidney stone, or an eyeball yanked out with a fishing hook. (Though this last one would need to be on a daily basis of course)
So as I sit there futily attempting to describe agony levels it occurs to me that maybe it's not so much the desire to impart the experience as it is to illicit some proper response. To 'feel' sympathy as empathy is out of the question. Dunno what in the world that response could be but whatever has been tried thus far hasn't come close to satiating me. To refer to a prior post I'm too lazy to link to, this damn disease has changed me and sometimes there's a strange (but magnificently handsome) person staring back in the mirror. OH, the horror.
nots
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IndianaJohn
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Re: Do we need their sympathy?
« Reply #1 on: Sep 21st, 2004, 9:55pm » |
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I don't even make the attempt to explain anymore. It would be nice to get some understanding or empathy, but I have found that it's impossible. 
John
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Did my brains fall out or is this headache over?
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Sean_C
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Re: Do we need their sympathy?
« Reply #2 on: Sep 21st, 2004, 9:58pm » |
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on Sep 21st, 2004, 9:49pm, notseinfeld wrote:| It's a harrowing thought but sometimes it does feel as though my effort for explanation of the extreme pain a CH sufferer goes through falls on deaf ears. Even folks who I think can at least 'relate' to the pain |
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Well unfortunately we do understand. Best advice I can give is to forget about the others sympathy. You don't need it anyway. Where here if ya need a shoulder, where all rowin' together.
PF wishes to you
Sean........................
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floridian
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Re: Do we need their sympathy?
« Reply #3 on: Sep 21st, 2004, 10:02pm » |
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Without trying to answer your question, let me invert it and pose another - which is not specifically related to clusters or pain. How often do we really understand others? How often do we reshape what they are trying to say based on our own experience or ideas?
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Kevin_M
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Re: Do we need their sympathy?
« Reply #4 on: Sep 21st, 2004, 10:03pm » |
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on Sep 21st, 2004, 9:49pm, notseinfeld wrote:| maybe it's not so much the desire to impart the experience as it is to illicit some proper response. |
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If somebody were to see you get whacked in the temple with a hammer and then see you struggle on the ground with the agony of the pain it brought - they could identify, understand the pain and feel for you. The visual of the hammer hitting imparts the experience.
But if they only saw you on the ground and struggling in agony but didn't see the hammer hit you, then it would be hard to identify with the experience. They might just say, "It looks like it hurts." It would be harder to illicit the proper response.
No one sees what makes us writhe in agony.
Kevin M
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vig
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Re: Do we need their sympathy?
« Reply #5 on: Sep 21st, 2004, 10:06pm » |
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When I see others have CH attacks, I don't just witness it. It makes me reexperience my own. I relive it. It's VERY intense. The 'others' don't have anything like it in their repertoire to compare it to like we do.
my $.02
It's not a judgmental thing, it just means I have to understand that about them.
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Sean_C
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Re: Do we need their sympathy?
« Reply #6 on: Sep 21st, 2004, 10:17pm » |
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on Sep 21st, 2004, 10:02pm, floridian wrote:| How often do we really understand others? How often do we reshape what they are trying to say based on our own experience or ideas? |
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Thats a tough question. For example if someone says "I can relate to that" well can they? If someone says "I don't quite understand" well should they? There is no reasonable response to that question other than "reflection". My answer would be one can only truly understand ones meaning through their own life experiences.
Sean..............
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Lobster
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Re: Do we need their sympathy?
« Reply #7 on: Sep 21st, 2004, 10:17pm » |
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on Sep 21st, 2004, 10:02pm, floridian wrote:| How often do we really understand others? |
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Irrelevant. We are the ruling elite, by virtue of our enlarged hypothalathingys.
We are to be understood. They are to understand or be punished.
/gets back to doing overlordy things
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brain_cramps
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Re: Do we need their sympathy?
« Reply #8 on: Sep 21st, 2004, 10:32pm » |
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LMAO Lobster!!!!!
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Lizzie2
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Re: Do we need their sympathy?
« Reply #9 on: Sep 22nd, 2004, 12:05am » |
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on Sep 21st, 2004, 10:17pm, Rock_Lobster wrote:
Irrelevant. We are the ruling elite, by virtue of our enlarged hypothalathingys.
We are to be understood. They are to understand or be punished.
/gets back to doing overlordy things
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ROFL Wrokk...you always crack me up 
I have kind of given this a lot of thought recently in reference to nursing. On my evaluations, I consistently get comments from instructors about how good I am at communicating with patients and how I relate very well to all of my patients and they seem to work well with me. Ehhh...I guess most of the time this is true!
Then I talked about it with my psychiatrist last Friday. It isn't that we can relate to all the things our patients go through. Hell, I wouldn't even want to relate to even a small portion of what they go through. No thanks.
However, I relate to the experience of being in the hospital and all of the things that all hospital patients experience together. I relate to PICC lines, blood clots, countless IVs, doctors not listening or not showing up, frustrations with nurses, pain, lack of sleep, what have you. Many patients experience these common things.
I can't relate to a patient who has atrial fibrillation, just had a hip replacement, and also had a stroke. Hrmmmm
But then, I don't want to relate to this on a "been there" kind of plane!
I guess I can't expect people to relate to my clusters, but I can't really relate to many of the things they experience either. We rationalize it on our own level. I wish some days they could relate because then maybe, for example, my roommate would cut me a break instead of getting pissed at me because I didn't show up for my morning class because I had only slept an hour or two. But what the hell...let her think what she wants! I'm my own person.
Plus I have you all people who relate just fine...unfortunately as someone above said! Wouldn't wish this on anyone!
Lizzie
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rumplestiltskin
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I recall a moment in a play when during a pivotal dramatic moment....my lines tearing at the heart of another character...some of the audience laughed.
I recall describing clusters to a very close friend. He paused...eyes squinting...face in a pained expression...and he said "damn!".
The art of communication lies as much with the openess of the listener as it does with the skills of the speaker.
...and then theres our attachment to the responce...
If you know what the wall is made of...and what the ball is made of...and can control the force that you use to throw the ball...you can predict with some accuracy the bounce...
This message board is a prime example of the unpredictable nature of communication. Too often folks demand specific responses to their posts and then are disappointed by what they get....headless men, heartless women, caring keyboards...raquetball in the twilight zone.
"damn"
den
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Dave_Emond
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Re: Do we need their sympathy?
« Reply #11 on: Sep 22nd, 2004, 3:35am » |
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Quote:| If you know what the wall is made of...and what the ball is made of...and can control the force that you use to throw the ball...you can predict with some accuracy the bounce... |
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Damn Den! Now that's some good singing 
I agree, if someone shows an interest in hearing and trying to understand, I'll talk to them. If not, or I hear, "Oh I've had bad headaches before" ... end of conversation. Nope, don't need sympathy and don't have the corner on pain. Best thing would be to get the medical world to understand and do something about it.
Dave
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Superpain
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Re: Do we need their sympathy?
« Reply #12 on: Sep 22nd, 2004, 4:50am » |
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I'm with you Rock! 
I don't need or want sympathy. If I need empathy I come here.
I just don't want the bullshit side effects of lack of understanding from the pleebs with the little girly man hypothalamathingy's...
All their bullshit responses from "Take some tylenol..." to "Oh great! Another headache! Isn't that convenient!" make me wish them dead. 
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alleyoop
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Re: is anybody out there?
« Reply #13 on: Sep 22nd, 2004, 6:21am » |
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on Sep 22nd, 2004, 12:07am, rumplestiltskin wrote:I recall a moment in a play when during a pivotal dramatic moment....my lines tearing at the heart of another character...some of the audience laughed.
I recall describing clusters to a very close friend. He paused...eyes squinting...face in a pained expression...and he said "damn!".
The art of communication lies as much with the openess of the listener as it does with the skills of the speaker.
...and then theres our attachment to the responce...
If you know what the wall is made of...and what the ball is made of...and can control the force that you use to throw the ball...you can predict with some accuracy the bounce...
This message board is a prime example of the unpredictable nature of communication. Too often folks demand specific responses to their posts and then are disappointed by what they get....headless men, heartless women, caring keyboards...raquetball in the twilight zone.
"damn"
den |
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VERY INSIGHTFUL POST!
You seldom disappoint Den.
............................alley
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Jeepgun
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Re: Do we need their sympathy?
« Reply #14 on: Sep 22nd, 2004, 8:06am » |
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I don't care who understands and who doesn't, anymore. If someone is really interested, I send them to ch.com and tell them to page down to the red text that reads, "Want to know what it's like to live with cluster headaches?"
I don't want to hear about Aunt Maude's migraines or Uncle Wally's tension headaches. Fuck that. I don't want anyone's sympathy, either. People barely understand themselves! Why should I expect anyone to actually take the time/effort to understand me?
-Frank
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no-one
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Re: Do we need their sympathy?
« Reply #15 on: Sep 22nd, 2004, 8:28am » |
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I don't need or want sympathy.
If I need amything I come here to my family, who understands.
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ExplodingEyeBall
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Re: Do we need their sympathy?
« Reply #16 on: Sep 22nd, 2004, 8:47am » |
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I've also given up trying to explain.
If you haven't had CH, then you can't possible understand the pain.
The best explanation I've ever given was to a friend of mine who has been through a lot of pain himself and who actually flinched and grabbed his eye when I got to the final part.
---------------------------------------------------------------------
Imagine that you are sleeping peacefully. You are so relaxed that it feels like you are going to melt right into your bed.
Meanwhile... Sitting in the corner of your room is a little demon. While he watches you sleep, he has built a small fire. In that fire, he is heating up a steel rod. He watches with an evil grin on his face while he waits for the steel rod to get heated up so much that it is white hot.
At last, the steel rod has reached the temperature that he wanted. It is starting to warp from the heat. At this he sneaks over to your bed and watches for just another second while he enjoys thinking about the pain you will be in very soon.
Suddenly he lifts the white hot steel rod and shoves it into your eye so hard it comes out the back of your head!!!!!!!!
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I'm not looking for sympathy because most people wouldn't understand this. If someone from THIS family told me that they understand, I would believe them.
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Just poke out my eye and get it over with!!!
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Tom K
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Re: Do we need their sympathy?
« Reply #17 on: Sep 22nd, 2004, 8:54am » |
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on Sep 21st, 2004, 10:03pm, Kevin_M wrote:
If somebody were to see you get whacked in the temple with a hammer and then see you struggle on the ground with the agony of the pain it brought - they could identify, understand the pain and feel for you. The visual of the hammer hitting imparts the experience.
Kevin M
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Then I say we all carry hammers! When someone asks what it feels like, give em a whack  ! That would go far to helping others understand what we go through and maybe get some additional funding for research...Cuz think of it...if someone famous had these we would already be well beyond what we know. So why not go whack a celeberity?
T
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TomM
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Re: is anybody out there?
« Reply #18 on: Sep 22nd, 2004, 9:00am » |
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on Sep 22nd, 2004, 12:07am, rumplestiltskin wrote:This message board is a prime example of the unpredictable nature of communication. Too often folks demand specific responses to their posts and then are disappointed by what they get....headless men, heartless women, caring keyboards...raquetball in the twilight zone.
"damn"
den |
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Damn Den. You sure you're not related to Freud? Very deep and on target.
As others have written in this thread, I do not attempt to explain anymore. Folks make passing comments that we all have heard and many have written here so I won't waste the "black squiggles" on that. It suffices to say that when someone feels close enough to me that they ask with sincere interest, I will evaluate their concern and then when I feel comfortable with them I explain this ordeal we all endure.
"Damn"
TomM
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E-Double
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Re: Do we need their sympathy?
« Reply #19 on: Sep 22nd, 2004, 9:51am » |
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It seems many get to a point where we could care less about sympathy. I never wanted it. As all I find empathy when needed here.
I personally think it would be nice for the outside world to show some compassion or at least common decency. PERIOD!! not just for our CH but for all.
E.
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Jeepgun
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Re: Do we need their sympathy?
« Reply #20 on: Sep 22nd, 2004, 10:16am » |
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Right on, EE.
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notseinfeld
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Re: Do we need their sympathy?
« Reply #21 on: Sep 22nd, 2004, 10:28am » |
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Well done gang--Bravo!
So strange to post or orate where 'everyone' understands and can relate fully as opposed to getting the deer in headlights response I'm used to. Probably why CH.com has addictive properties.
Thanks all---
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Redd
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Re: Do we need their sympathy?
« Reply #22 on: Sep 22nd, 2004, 10:37am » |
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Here is the ONLY place I've found where there is ANY compassion or understanding.....(besides my specialists office of course)
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Kirk
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Re: Do we need their sympathy?
« Reply #23 on: Sep 22nd, 2004, 10:59am » |
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Scroooooom I've given up trying to explain it. My communication skills are not up to the task.
TTFN
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Jeepgun
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Re: Do we need their sympathy?
« Reply #24 on: Sep 22nd, 2004, 11:37am » |
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"Sympathy" is found between "shit" and "syphilis" in the dictionary. 
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