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ChrisUhl
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Told my boss about my CH
« on: Mar 14th, 2004, 2:08pm » |
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I've just started a new cycle one week ago with 3-4 attacks a day and at a much higher KIP level than usual. So Wednesday morning I had to call in sick for work.
I work as a copywriter at an ad agency. And for some 5 years ago my boss did a brochure for a medical company selling headache drugs (can't remember which company though). And she had actually written a short passage about clusters. So I thought she would understand 100 pct.
Well, she was really sweet about it when I told her. She felt very sorry for me and that was of course nice. But then she said something that almost made me burst into tears. The lighting conditions and ventilation in our office is amazingly poor. And she tried to explain my headaches with that. I reminded her of the nature of clusters. But she just kept on and told me that she herself got headaches from the conditions at work.
The point is that although she handled it ok she still had that "Well it can't be that bad-I've-got-headaches-myself"-attitude. God it's frustrating, right? If I had had kidney stones or something everybody would accept the fact that it hurts like hell. But with CH... No!
Not that I would wan't anyone to experience CH. But sometimes it would be nice if co-workers and other sceptics could get just a single attack. Just so they would understand.
ARGH!
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Giovanni
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Re: Told my boss about my CH
« Reply #1 on: Mar 14th, 2004, 3:52pm » |
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I only have a part time job now for the past two years and my immediate supervisor is aware of these headaches as he witnessed one first hand last year. Also, I pulled up this website and showed him how my clusterbuddies were suffering. He has been very understanding. I usually never miss work, but last year having numerous hits during the apex of the cycle, I couldn't make it into work for about 3 or 4 days. Also, my appearance after a couple rounds of steriods got his attention.
The bottom line is that NO ONE completely understands the torture of these things unless it someone else who has them.
Good luck to you,
John
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Renee
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Re: Told my boss about my CH
« Reply #2 on: Mar 14th, 2004, 3:56pm » |
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Chris,
I hear ya on that last statement!
I too get from my employees and family things like:
1. What have you eaten?
2. You are under too much stress
3. You just need a good massage
4. Maybe you are sleeping wrong
So glad you talked to your boss and that she was understanding but maybe you should take her some CH info so she'll see these HA aren't the same pain level as the tiny HA that the majority of the population suffers. She might have a jog in her memory or actually learn more about CH.
We're here if ya need us!
Renee
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23 years of battling the beast, 9 years chronic......uneducated docs/nurses make me irate.
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Jayne
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Re: Told my boss about my CH
« Reply #3 on: Mar 14th, 2004, 4:34pm » |
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I still say it is because this awful disease has the word "headache" in it. People latch on to that word and that is thier point of reference...a comparison to thier own headaches that they have had in thier life.
I say we call them "Brain and eye boil syndrome"
Let's see what they all say to that one.
I went to have my eyes checked the other day and I warned them if they shine a bright light in my left eye, it kills me because of my clusterheadaches....I got the usual respons...oh yes I get those two,,,I have to lay down and take aleve....blah blah blah..I said, "omg that must be so awful for you"
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| « Last Edit: Mar 14th, 2004, 4:35pm by Jayne » |
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floridian
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Re: Told my boss about my CH
« Reply #4 on: Mar 14th, 2004, 4:46pm » |
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That sucks about your boss, Christian.
Quote:| I still say it is because this awful disease has the word "headache" in it. |
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How about renaming the disease "Horton's encephalagia" - that would remove the "headache" bias that most people have. Encephalagia means headache, but who knows that?? "Horton's encephalagia is a disease that includes disruption to many of the body's systems and severe pain. It can be epsodic or chronic, and is debilitating to various degrees. "
The only problem with this is that OUCH and Clusterheadaches.com would have to change their name.
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FZfan
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Re: Told my boss about my CH
« Reply #6 on: Mar 14th, 2004, 7:52pm » |
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on Mar 14th, 2004, 4:34pm, Jayne wrote:I still say it is because this awful disease has the word "headache" in it. People latch on to that word and that is thier point of reference...a comparison to thier own headaches that they have had in thier life.
I say we call them "Brain and eye boil syndrome"
Let's see what they all say to that one.
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couldn't agree more!
ChrisUHL, some bosses are completely closed minded, no matter what, but it's worth a try. I printed the employer form from the OUCH website, had my doctor fill it out and gave it to my boss. I also passed copies of it to my co-workers. That has been a big help in my case. Had to take two days off last week because of the beast and all I had to do was call in and say "clusters, can't make it". I also refer anyone interested to check out this site.
Oh, Jayne, how about WoFPaK Disorder? Worst Fucking Pain Known.
Hey, this could be a contest.
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pubgirl
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Re: Told my boss about my CH
« Reply #7 on: Mar 14th, 2004, 7:56pm » |
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Just a thought, perhaps it would be worth having the "colleagues note" on the main OUCH board here as well.
The Doctors note is good, but you either need to get the GP to fill it in, or if you don't it doesn't look very credible. It also isn't as useful for general work colleagues.
Wendy
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randal
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Re: Told my boss about my CH
« Reply #8 on: Mar 14th, 2004, 8:16pm » |
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I cant stand the word "Headache" either. This is my 8th week on Disability and half my co-workers believe me and half are saying what the hell is he doing getting disability for "Headaches". My manager tells them it must be pretty bad because the doctor cant just put you on disability without a reason. I also feel somtimes if that person could just have one CH they would understand but I dont think I could wish that even on my worst enemy. Hang in there and frequent this web sight because it gets me through some rough times.
Randal
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Kevin_M
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Re: Told my boss about my CH
« Reply #9 on: Mar 14th, 2004, 9:55pm » |
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on Mar 14th, 2004, 4:34pm, Jayne wrote:| I still say it is because this awful disease has the word "headache" in it. |
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Yes Jayne, when you say headache, it's like, "Doesn't Kroger, Walgreen, and CVS have whole aisles for things like that. Have ya tried..."
The "head" portion of the word is not inappropriate, but the word "ache"? No dictionary or thesaurus has any word that describes clusters under the word "ache".
'Tis not an "ache", for sure. Headachemyass. Perhaps
it hasn't been been delineated from headache because we haven't found "a" word to describe it which goes with head. Headterror, unbearableheadterror, hammerwhackedtempleheadtorment or take my head...please.
Toughie Jayne, but good point. Perhaps we should write Oxford Dictionary to have a word just for us. See if any geniuses can find a word for it which says "head tormented by pain from brutal attack which can make a rhinocerous put all fours in the air and want to gore it with its horn if it could.
My brother had bypass surgury, he is still rather young (44). Then he had a bad infection which left his chest open and deformed. Afterward he had brutal headaches which he called my other brother while he was lying on the floor helpless. He got to emergency and was given something. They went away after more shadows. To this day, he looks at me and says, "you know, the worst part of the whole ordeal painwise was those headaches." I couldn't believe the torture he said. He has been through two heart attacks too. Not to downplay the pain of a heartattack, I know, I drove him to emergency for both attacks, but he said he was helpless and wordless to describe the only time he cried in mercy. What do you call that, an ACHE?
Kevin M
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Charlie
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Re: Told my boss about my CH
« Reply #10 on: Mar 14th, 2004, 10:06pm » |
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Same old sad story. The best thing to do is use the link to Simon's letter that Wendy posted. It's made for this situation.
It never ends
Charlie
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gore2424
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Re: Told my boss about my CH
« Reply #11 on: Mar 14th, 2004, 10:13pm » |
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Most bosses and co-workers just dont know how painfull these clusters are. I always put in "CHRONIC" like Chronic Cluster Headaches. That will get attetion then. I was lucky for all but 1 or 2 bosses in the 20 years I sold autoparts. They didnt care or or give a hoot. When I became chronic in Novenber 1999 I knew of this site and all the info you can get. Plus my wife is a CNA and reads alot. So her books like the one about drugs and side effects was very helpful. But in December 2000 the new boss didnt care about people at work. He just wanted you there no if or buts. So I asked my boss to start a file at work for me so I could put in everything I had on cluster headaches. And I keept it very update with Dr. reports, tests, everything to do with this illness. I really thing that everyone having trouble at work with boss or co-workers should ask there boss to start a file for you. If he says no go over his head. I wanted work to know what meds I was taking too so they didnt think I was stoned all the time. Plus if they do drug testing you have meds on file. well thought I would let everyone know thats what I did. And if or when you go to get disability all those files and records will help you explaining your life and how the clusters affect your life 24/7. Hope I have helped someone. Be PF all nite and day.
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| « Last Edit: Mar 14th, 2004, 10:17pm by gore2424 » |
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Dave_Emond
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Re: Told my boss about my CH
« Reply #12 on: Mar 15th, 2004, 1:13am » |
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May be too late to help Chris here with the employer, but maybe can be of some help for anyone when talking to others about CH. I put up a thread with advice that has worked for me over the last couple years, after many years of relating to others and getting negative responses.
Hope this helps,
Dave
http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=general;acti on=display;num=1079315459
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ChrisUhl
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Re: Told my boss about my CH
« Reply #13 on: Mar 15th, 2004, 3:28am » |
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Thanks to all you guys for the great advice. Dave, I read your thread and that really seems to be THE way to approach people about CH.
Well, I took a decision last night. This is not gonna get me down. I've been whining for weeks now. And I can't stand myself doing that. So no more sobbing. Come on beast. Take your best shot. (well, maybe reversed psycology won't work on the beast. But hey. At least it's worth a try).
Thanks and big hugs to y'all
Chris
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ChrisUhl
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Re: Told my boss about my CH
« Reply #14 on: Mar 15th, 2004, 6:49am » |
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Wow Dave. This is my first day at work after I told my boss about CH. A lot of my co-workers had heard why I was absent and all went to talk to me about my migraine!!!!!!
So I told them that it was not migraine but a rare disorder that etc. just as you described in your guideline thread. And it worked out fantastic. Everyone understood the seriousness of the disorder. Fantastic.
Thanks for the great advice David. I'll pass it on to any clusterhead I meet on my way.
Cheers
Chris
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tnpruby
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Re: Told my boss about my CH
« Reply #15 on: Mar 15th, 2004, 8:22am » |
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Hi there, frustrating No Doubt, I USED to work for this company doing basic data entry, and like you ended up callin in due to the kip level of my cycle. Anyway , my boss had told me , "You need to do somethig about this, it is getting out of control", We simply cant have this here" I thought I was going to punch her in the face. I brought in all my medical forms and info pertaining to this awful burden we all deal with. I just showed up on my day off w/ papers in hand. I gave them to her and said "read this then talk to me , and if you have to fire me , "I QUIT". Well didnt get fired but left for a better job. Maybe if you bring in some medical info , it is considered a medical condition, and noone can fire you for that. Also I had medical notes for my visits to my neuro backing me up. I know its alot of work to shut someone up and listen but it is sooo worth it. Good luck, we are here... 
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toader
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Re: Told my boss about my CH
« Reply #16 on: Mar 15th, 2004, 12:21pm » |
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Don't you people read Dilbert?
Bosses are stupid and HR people are evil!!
Don't play the sympathy game - this is a professional relationship between your boss and you. Get your paperwork together from the doctor, insurance, etc and make it really easy for he/she to sign the dotted line for your time off, disability, etc.
You want sympathy, that's what we are for
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BlueMeanie
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Re: Told my boss about my CH
« Reply #17 on: Mar 15th, 2004, 8:52pm » |
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Sorry to hear about your inconciderate SOB boss. Hope it works out for you.
THAT SUCKS !!!!
pfdan
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