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        New Message Board Archives >> 2006 General Board Posts >> Some people just don't understand..
        
(Message started by: caseman on Oct 17^th, 2006, 12:10pm)

Title: Some people just don't understand..
Post by caseman on Oct 17^th, 2006, 12:10pm

Ever tell someone that you have been suffering from CH and they look at you like you are crazy? It happened to me while I was in school. My CH started last year while I was attending UConn's MBA program (GO HUSKIES!!). Anyway, I was in severe pain and was given a school note from my doctor keeping me out of school for the rest of the semester. When I brought the note to the school administration, the person in charge stated that he would not allow me to take the classes over at a later date and replace the grades. His reasoning was that he would not allow a medical excuse just because of "some headaches". Some people just aren't informed and don't understand that CH is a debilitating condition and needs to be treated like any other disease. Needless to say the administrator changed his toon after my doctor, who is great, wrote a long letter explaining the severity of my condition. It's just sad that sickness is often seen as weakness.

Title: Re: Some people just don't understand..
Post by kcopelin on Oct 17^th, 2006, 12:23pm

I have had approximately 250 people tell me, over the past 25 years, that they have headaches too, and they just go lie down in a dark room, or avoid caffeine, or smoke a joint.
Guess ya just get used to it, or I have, and I nod and commiserate with them about their pain, and tell them that I pray they never get clusters-cause their techniques would not work. Then I just shake my head, pat them on the back and wish them well.
They are probably not mean-spirited generally-just uninformed and why should I vent on them when it will do no good.
As for school and work-that is a totally different story. Most of us work twice as hard to make up for lost time, we put ourselves through unneeded pain, people who do not understand have our careers, our futures, our degrees in their hands. The letter to colleagues and employers is a great resource for this. And thank goodness you have a doc who stood up for ya.
Hang in there-
PFDAN,
kathy

Title: Re: Some people just don't understand..
Post by Linda_Howell on Oct 17^th, 2006, 12:51pm

Caseman, print this out to take with you in the future.

http://www.ouch-us.org/chgeneral/colleagueletter.htm

Title: Re: Some people just don't understand..
Post by Richr8 on Oct 17^th, 2006, 1:40pm

The only folks I have found that truly get it, are here.

Oh, and thank God, My Neuro.

Title: Re: Some people just don't understand..
Post by caseman on Oct 17^th, 2006, 2:00pm

on 10/17/06 at 12:51:28, Linda_Howell wrote:

Caseman, print this out to take with you in the future.

http://www.ouch-us.org/chgeneral/colleagueletter.htm

Thanks man.. I will.

Title: Re: Some people just don't understand..
Post by caseman on Oct 17^th, 2006, 2:11pm

on 10/17/06 at 12:23:34, kcopelin wrote:

Yea my doc is great. I had not even heard of CH before I went to him. He diagnosed me almost immediately after ruling out sinus infection and a tumor. I hear a lot of horror stories where people are not properly diagnosed for 5-10 years. Plus, my doc sits with me for up to an hour some appointments while I complain about my condition. It's really a relief to have a compassionate doc and not a guy who kicks you out of the office in 5 minutes for someone else. It just makes it that much easier on me during this traumatic time in my life..

Title: Re: Some people just don't understand..
Post by sandie99 on Oct 17^th, 2006, 2:38pm

Caseman,

I'm so glad that your doc wrote them a letter. When my ch made my uni studies nearly impossible in spring 2004 and I had to ask extention to my deadlines, my doc kindly wrote a letter to my uni too. I got the extention and got everything done.

But to your question... I meet people who have no idea about ch all the time. I got my diagnosis in 2003 and it even took my mum until this spring to get what ch is, although she was with me when I was diagnosed. I have pals who get it, but even more of them who don't. My aunt thinks that I "imagine" them. ::) I wish I was that creative... ;)

PF wishes to us all,
Sanna

Title: Re: Some people just don't understand..
Post by Turts on Oct 17^th, 2006, 3:50pm

glad to hear that things worked out.

It can be difficult for people to except that a 'headache' can be so debilitating, even when, quite often, the headaceh response has been prompted by them asking if you are alright, as they can physically see that you are unwell, especially with horneers syndrome present.

I have friends who 'get it' as I have had the pleasure of experiencing a KIP 8/9 at a friends party once and they all took turnings poking there heads into the bathroom, too watch as i attempting yet again to knock myself out headbutting the tile wall. only to emerge an hour later without much recollecting of what had happened.

i have also shown others the video of an attack as it occurs from one of these websites
Turts
;;D

Title: Re: Some people just don't understand..
Post by maffumatt on Oct 17^th, 2006, 4:16pm

no, some people don't understand, sometimes even those that should, dont.

Title: Re: Some people just don't understand..
Post by echo on Oct 17^th, 2006, 4:21pm

I agree, some people just don't get it. That's why I carry a tack hammer with me. When they tell me they've also had a headache or ask what it feels like I whack them between the look looks. When they respond with "Is that what a CH feels like?" I answer with a resounding "NO!".

Title: Re: Some people just don't understand..
Post by seasonalboomer on Oct 17^th, 2006, 4:27pm

I generally don't care if others "get it" or not. If a doctor doesn't get it, get a new doctor - because in all likelihood this isn't the only thing he doesn't "get". As for acquaintances and colleagues, they will or they won't. For the one's that do, a big hug. For the one's that don't, maybe they have their own things to worry about - I can't hold it against them.

scott

Title: Re: Some people just don't understand..
Post by Charlie on Oct 17^th, 2006, 5:53pm

Been there of course and glad you had the right doc.

Perhaps if we ask a male administrator to sit down so we can stomp on his balls and then explain that CH is ten times worse, they might have an inkling. http://kolobok.wrg.ru/smiles/standart/fool.gif?SSImageQuality=Full

Charlie

Title: Re: Some people just don't understand..
Post by AussieBrian on Oct 17^th, 2006, 6:57pm

Why should other people understand our little problem? Don't understand it myself.

Title: Re: Some people just don't understand..
Post by caseman on Oct 18^th, 2006, 6:17am

on 10/17/06 at 18:57:31, AussieBrian wrote:

Why should other people understand our little problem? Don't understand it myself.

Well that's true, but at least they could believe us and realize that we are all doing the best we can with the cards we have been dealt..

Title: Re: Some people just don't understand..
Post by maffumatt on Oct 18^th, 2006, 7:18am

to bad we're playing with a stacked deck.

Title: Re: Some people just don't understand..
Post by chewy on Oct 18^th, 2006, 8:12am

Quote:

My aunt thinks that I "imagine" them.

Ask her why you can't also imagine a cure?

Title: Re: Some people just don't understand..
Post by Carl_D on Oct 19^th, 2006, 4:26am

on 10/17/06 at 16:16:21, maffumatt wrote:

no, some people don't understand, sometimes even those that should, dont.

Too true!