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Cluster Headache Help and Support >> Getting to Know Ya >> Letter to Employers & Colleagues
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Message started by E-Double on Apr 25th, 2005 at 6:18pm

Title: Letter to Employers & Colleagues
Post by E-Double on Apr 25th, 2005 at 6:18pm
As well all know it is very difficult to explain what it is we go through....
Many look at us as if there is no way in hell something can be that debilitating.

Here is a letter that you can give your employers, colleagues, professors, fellow students that will explain in very simple language what it is that we go through.
How CH is a misnomer!!

It is known to us as "Simon's Letter" ;)
Simon is a UK CH'er who had the wherewithal to develop this perfect letter.

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Wishing you all Pain Free Days!!!!!!and Nights ;)

Eric

Title: Re: Letter to Employers & Colleagues
Post by Redneck on Apr 25th, 2005 at 10:38pm
And a good letter it is, when this cycle started last Thanksgiving I gave it to everyone in the office and emailed it to all my counterparts around the state. They may not really understand but at least some of them have a better understanding of what is goning on now.

Title: Re: Letter to Employers & Colleagues
Post by LadyLuv on Apr 28th, 2005 at 12:22pm
This is a great letter... and it will come in handy

Peace & Blessings
Lady Luv

Title: Re: Letter to Employers & Colleagues
Post by wifesupporter on Apr 29th, 2005 at 6:57pm
awesome link and letter  thanks.  My wife is the sufferer and I am thankfull that she is not working at this time so she can try to cope the best way she can however I have a lot of explaning to do at work as to why I am so tired all the time and this will help I am gratefull I work with a bunch of wonderful people who can understand all I have been teaching them about this thing.  

Thanks again for bringing this to everyones attention

Steve

Title: Re: Letter to Employers & Colleagues
Post by E-Double on May 2nd, 2005 at 9:15pm

wrote on May 2nd, 2005 at 9:06pm:
The suicide part of the letter isn't that cool to give to your employer. It would be alot better if that was edited out. My employer had issues with that part.

Matt


considering that Dr's throughout the world have called CH "suicide HA" for yrs.....that gets the point across that headache is a misnomer.....

I guess edit it as you deem fit but at the same time your employer should not take issue with any disease that one has.

Stay positive

Title: Re: Letter to Employers & Colleagues
Post by mynm156 on May 4th, 2005 at 7:23pm
Cool Thanks!

Title: Re: Letter to Employers & Colleagues
Post by ArCane on May 11th, 2005 at 12:22pm

wrote on May 3rd, 2005 at 5:46pm:
only speaking from experiance. Anyone that has the safety of others in their hands ( where if you screw up they die kind of safety) may want to consider editing that part out. That is unless you feel unsafe. If you don't feel safe working, i wouldn't risk others safety.

After reading the letter, issue was taken with the fact that if I were to commit suicide at work and others were also hurt, the employer would be held responsible for the others death. After giveing the letter to the employer he has foreknowledge that this is a possibility, and would therefore be held  liable, perhaps criminally. Its still a very good letter, it explains alot. It some cases it might cause undue concern.

Why would you hurt or kill others when commiting suicide?  Going "postal" has nothing to do with suicide.  If you go "postal" you have bigger problems than CH.  The subject on suicide in this letter is just letting everyone know just how painful these things really are.  Who here hasn't thought about suicide, atleast for a second, during day in-day out kip 9-10 headaches?  I know, I have.  It isnt a realistic option for me (have to many loved ones) but I have thought about it during an attack.

Title: Re: Letter to Employers & Colleagues
Post by E-Double on May 11th, 2005 at 12:24pm
This post isn't supposed to be a debate. It's there for a resource to all that could use the link.



PF wishes!

Title: Re: Letter to Employers & Colleagues
Post by ArCane on May 11th, 2005 at 12:26pm

E-Double wrote on May 11th, 2005 at 12:24pm:
This post isn't supposed to be a debate. It's there for a resource to all that could use the link.



PF wishes!

Sorry bro.  Ill shut up now  ;;D.

Title: Re: Letter to Employers & Colleagues
Post by Candycane on Jun 1st, 2005 at 8:41pm
Thanks for the great info!  :)

Title: Re: Letter to Employers & Colleagues
Post by Jonny on Jun 2nd, 2005 at 5:24pm
Thanks DJ....You Da Man, Dude!!

Title: Re: Letter to Employers & Colleagues
Post by E-Double on Jun 2nd, 2005 at 5:28pm
;;D Thanks DJ ;;D

Title: Re: Letter to Employers & Colleagues
Post by iain_bridge on Jun 3rd, 2005 at 6:13am
What a great letter, not only for employees but anyone you deem close enough to understand this hell that we are all going through.

Thanks it will come in very useful

take care everyone
Iain

Title: Re: Letter to Employers & Colleagues
Post by RClarke54 on Jun 4th, 2005 at 5:10pm
Hello all,

           I have been a episodic cluster sufferer for about 10+ yrs now. I recenlty could not have fallen into a cycle in a worse positon. I am talking no car and no job, pretty bad. I recenlty though took this job offer before telling my manager about my ch's. After getting two excruciating attacks at work my boss became curious, and it wasn't until then that I had to tell him about the condition. He then proceeded to tell me that I could not work there anymore because the store could not work around my ch's. What would be anyone elses opinion or advice on how or when I should go for another job at this point?, and if I should tell my next boss about my condition.Email is RClarke54@hotmail.com, just let me know when you can as I am all ears at this point. Thanks.

Title: Re: Letter to Employers & Colleagues
Post by Jonny on Jun 10th, 2005 at 7:14pm

RClarke54 wrote on Jun 4th, 2005 at 5:10pm:
Hello all,

           I have been a episodic cluster sufferer for about 10+ yrs now. I recenlty could not have fallen into a cycle in a worse positon. I am talking no car and no job, pretty bad. I recenlty though took this job offer before telling my manager about my ch's. After getting two excruciating attacks at work my boss became curious, and it wasn't until then that I had to tell him about the condition. He then proceeded to tell me that I could not work there anymore because the store could not work around my ch's. What would be anyone elses opinion or advice on how or when I should go for another job at this point?, and if I should tell my next boss about my condition.Email is RClarke54@hotmail.com, just let me know when you can as I am all ears at this point. Thanks.


Sue!!...you cant be fired because of a disability

Title: Re: Letter to Employers & Colleagues
Post by Kim Y. on Jun 18th, 2005 at 10:06pm

Quote:
What would be anyone elses opinion or advice on how or when I should go for another job at this point?, and if I should tell my next boss about my condition.Email is RClarke54@hotmail.com, just let me know when you can as I am all ears at this point. Thanks.
They can't fire you for this.....

If you tell them in the interview they will come up with some reason why they couldn't hire you.

Title: Re: Letter to Employers & Colleagues
Post by sean0 on Jun 28th, 2005 at 8:45pm
Excellent letter. This is the first time I have seen the syndrome explained so clearly and succinct.

It will come in handy.

Title: Re: Letter to Employers & Colleagues
Post by Kirk on Jul 7th, 2005 at 8:40pm
Is that letter in a different format someplace? Like a PDF?

Thanks

Title: Re: Letter to Employers & Colleagues
Post by drivin_blind on Jul 19th, 2005 at 2:29pm
What an excellent letter. I am very fortunate to have a G.P. that is a close friend. He spent hours and hours learning everything he could about CH. back in the 80's. He's been a godsend. I've tried to explain to co-workers who are very sympathetic. This hits it on the head.  Thank you!!  Dick

Title: Re: Letter to Employers & Colleagues
Post by scarmig on Jul 29th, 2005 at 3:28pm
For those who don't have Word, I've htmled a copy onto my website.  

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

Feel free to use it, copy it, or link to it, though i make no guarantees on how long it will stay put.  :)

Title: Re: Letter to Employers & Colleagues
Post by Jasmyn on Jul 31st, 2005 at 3:18am
Great letter!

Title: Re: Letter to Employers & Colleagues
Post by marlinsfan on Aug 18th, 2005 at 8:55am
So, in my company we have several employee Networks. One is the DAN, which is the network for disabled employees.

Yesterday I went through the anti-harrassment training, and in  the ADA (americans with disabilities act) there is mention of severe migraines but not CH.

I approached the folks at DAN and they have asked me to write an article on CH, and I was thinking of using a shortened version of this letter.

I work for a large company, there are 4000 employees in my building alone.

Does anyone have any issues with this?

I will include the last sentence:

"Original draft of this letter written by Simon Bower for START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE"



Title: Re: Letter to Employers & Colleagues
Post by Simon on Aug 30th, 2005 at 2:11pm
All I've ever asked was that my name is on it! Just a little bit of conceit on my part. :) Anyone welcome to use it, and put it on websites. Good to hear that it is still having some use.

Might be worth noting that it has been translated into American.... :)


Baa




Title: Re: Letter to Employers & Colleagues
Post by E-Double on Aug 30th, 2005 at 2:49pm
Thank you always Simon! :)


Title: Re: Letter to Employers & Colleagues
Post by bradboy on Aug 31st, 2005 at 3:27pm
Thanks Eric. You have been such a big help to me. I just sent this to my boss and a colleague and hopefully it will help them understand as I've been forced to work from home nearly 2 weeks now.

I also called the New England Center for HeadAches as you suggested. Unfortunately they only accept 2 types of insurance and mine (blue cross blue shield) isn't one of them. I need to call my insurance company to see if they will reimburse me the $590 consulation fee and $150 visit thereafter.

Title: Re: Letter to Employers & Colleagues
Post by BlueMeanie on Oct 5th, 2005 at 6:15pm
Definately an excellent letter for employers, family and friends. Ever since I showed the letter to my boss, she would ask me everyday if I'm getting shadows or got hit at night etc. and wanted all the details about CH's.

She now only asks once in awhile if my cycle started yet. Luckily for me, I keep saying not yet.  :)

Title: Re: Letter to Employers & Colleagues
Post by jon019 on Oct 5th, 2005 at 10:06pm
Quote Simon

All I've ever asked was that my name is on it! Just a little bit of conceit on my part. :) Anyone welcome to use it, and put it on websites. Good to hear that it is still having some use.

Might be worth noting that it has been translated into American.... :)


Baa


Hi Simon,

Your name! dang, if I had a first born he'd be named after YOU! It is a wonderful letter.

I have not yet shown it to friends and coworkers but I'm getting closer. This is such an self focusing condition that I have a hard time including others. The ONLY ones that understand (at least it seems to me) are on this list. It's a big leap to try to share the pain because of the fear of how it will be interpreted by others.

I've heard every one of the last part of your letter. May I have the courage to at least try.

Wondered who you were. Delighted to see your post. Many thanks.


jon019

Title: Re: Letter to Employers & Colleagues
Post by jason1212 on Oct 26th, 2005 at 2:20pm
Hey Eric, thanks for posting this.  I've needed this for a very long time.

-Jason

Title: Re: Letter to Employers & Colleagues
Post by lionsound on Nov 26th, 2005 at 9:21am
I am pregnant :) and I gave a copy of this letter to my obstetrician. My OB read the letter and liked it a lot and also emailed alll the other docs in the practice about me. She  put in my file so all the docs in the practice get a look at it if they treat me and it goes with my info over to the hospital for when I deliver in late December.

-lionsound


Title: Re: Letter to Employers & Colleagues
Post by tanyae on Nov 26th, 2005 at 9:45am
Where can I find "Simon's Letter"?

Title: Re: Letter to Employers & Colleagues
Post by E-Double on Nov 26th, 2005 at 9:52am

tanyae wrote on Nov 26th, 2005 at 9:45am:
Where can I find "Simon's Letter"?


on page 1 hit the hyperlink.

While you are there...Join OUCH!

Title: Re: Letter to Employers & Colleagues
Post by tanyae on Nov 26th, 2005 at 10:01pm
Thanks, I did sign up while there!
Great letter like you all said.

Title: Re: Letter to Employers & Colleagues
Post by Delts on Dec 1st, 2005 at 1:55am
Simon that is the best explanation of CH i have heard every time i try and explain i cannot convey the seriousness of attacks, as soon as people hear headache they switch off and seem to think a paracetamol will do the job  >:( Nice one mate ;)

Title: Re: Letter to Employers & Colleagues
Post by chewy on Jan 21st, 2006 at 7:47am

Quote:
Sue!!...you cant be fired because of a disability


Its not always that cut and dry. Upon hire an amployer may legaly ask if you have any health conditions that may effect your job performance. How did you answer that question?

Do you have documentation of your condition on file with human resources?

How many employees does your company have.

An employer is required to act with due diligence but so is the employee.

Title: Re: Letter to Employers & Colleagues
Post by mt240sx on Feb 7th, 2006 at 9:28am
Thank you for this link i sent it to my friend's, co-workers, and boss it has helped them to understand that it is not a migraine or tension headache like they have had in the past.

Title: Re: Letter to Employers & Colleagues
Post by dacluster on Feb 14th, 2006 at 10:39am
I like this letter!  It just about hits the nail on the thumb!  As funny as this may sound, I have been shot before, and I would still rather be shot than experience another CH!  I am not kidding.  At least when you are in shock, you don't feel as much!  If it would get rid of any an all future headaches, don't miss!

Title: Re: Letter to Employers & Colleagues
Post by dacluster on Feb 14th, 2006 at 10:49am
Addendum:
...by shot again, I mean I would rather survive the incident so that I could relish the feeling of never experiencing the MONSTER again!  I consider them a fair trade!

Title: Re: Letter to Employers & Colleagues
Post by Dragnlance on Feb 14th, 2006 at 10:51am
Print this letter off and give it to those that need it. You will be surprised at how well it helps.

Title: Re: Letter to Employers & Colleagues
Post by Garys_Girl on Apr 4th, 2006 at 7:03pm
What a great letter!  Our friends have begun to think we're using "migraines" (didn't know until a few days ago when I found this site that it was Cluster Headaches) as an excuse to break weekend dates.  Gary started getting CH several times a day - always in the evening - at the beginning of March.  We've had to cancel plans each weekend as his pain just keeps on rolling.....   this letter should really help!

Thank you Simon!


Title: Re: Letter to Employers & Colleagues
Post by Garys_Girl on Apr 5th, 2006 at 2:30pm
On second thought - I would change just one thing in the letter.  At the end it mentions that CH sufferers may exhibit tiredness, irritability, etc.  I would simply change "tiredness" to "exhaustion."  Gary's had on average 2-3 hours of sleep per night, often with completely sleepless nights, and only a few naps here and there (which he could never do if we worked in an office 5 days a week) for over a month.  He's not just tired, and he's not just "bone weary;" he's completely exhausted.

Title: Re: Letter to Employers & Colleagues
Post by pingu1981 on Aug 4th, 2006 at 6:52am
Oh my word!!! That is SUCH a good letter!!! I've got a formal meeting coming up with my area manager where I know that CH is going to come up because they don't beleive I'm ill. I'm SO taking a copy with me!! [smiley=thumbsup.gif]

Thanks alot!!!
Michelle

Title: Re: Letter to Employers & Colleagues
Post by LeLimey on Aug 4th, 2006 at 7:07am
Michelle check your email!
I've sent you some other stuff
love
Helen

Title: Re: Letter to Employers & Colleagues
Post by BMoneeTheMoneeMan on Aug 15th, 2006 at 8:12pm
I am not the most computer savvy person, but I would like to send someone this letter in an email.
I havent been able to finger out how to save it as a PDF so that I can just attach it to an email and send it.
Can someone tell me how I can do that?

Thanks a lot.
BMonee

Title: Re: Letter to Employers & Colleagues
Post by Jonny on Aug 15th, 2006 at 8:30pm
Right click "PDF Version" and then click "Save as target"

Title: Re: Letter to Employers & Colleagues
Post by BMoneeTheMoneeMan on Aug 15th, 2006 at 9:32pm
Thanks, Bro.  
email is out the door

Title: Re: Letter to Employers & Colleagues
Post by aubmari on Aug 28th, 2006 at 6:35pm
Tthat is a really great letter I wish that I had only know about this web site and had the letter when I had my last round of them ('03). My boss thought that I was one of those "Hypocondriac slackers" that just didn't feel like coming into work!!!!! It would have been nice to be able to have help convincing him that it really is severe.  Thanks all for your info.  ;)

Title: Re: Letter to Employers & Colleagues
Post by psuet on Oct 18th, 2006 at 10:29pm
This letter is absolutely perfect.  I have had the unfortunate opportunity to lose a good job from ch.  I had doctors notes and everthing, but like it says if you've never had any, you can never understand.  I am printing and copying this to give to my instructors, fiancee and especially my mother.  She seems to think I am faking and I just need to come out of my room and do some yard work or something.  Ha Ha Ha.....

Title: Re: Letter to Employers & Colleagues
Post by winshots on Oct 19th, 2006 at 10:18am
Thank you for this letter, it says everything I'm trying to explain to everybody since I am no longer trying to hide my CH's to the rest of the world.
I would like to try to translate it into the Dutch language, if you permit.
(Maybe this has already been done? Tell me!)
Please inform me if you are OK with this and how to have the translation checked before publishing it (I prefer the PDF format).

Keep it up! :)

Title: Re: Letter to Employers & Colleagues
Post by Lawnmoman on Jan 24th, 2007 at 11:19pm
Hello all
I am new to the site and i dont feel so alone anymore."as corney as that sounds" Ive suffered for 26 years with the longest remission being a little over a year. Coincidentaly about six months after quitting smoking. Long enough i thought i was cured. I read the letter through tears. I think we all have felt somewhat like this before but I have never been able to speak so eloquently. I have forwarded this to close friends and family in hopes they might forgive anything i may have done in the past, present or future. THANKS!
CLUSTER FREE FOR FIVE HOURS AND COUNTING!

Title: Re: Letter to Employers & Colleagues
Post by MathenyMan on Mar 2nd, 2007 at 6:46am
Just to reiterate once again what you have all said, this was a great letter. I have, since reading it, posted it on my myspace for all to read. It's perfect(for myspace). Thats the one place where all the people I care about, reguardless of age, sex, or location can be contacted. Since I've posted it there, now I don't have to tell the weird story of my, "bad migraines" as most people like to call it, over and over again. I just annonced it in a bulletin and let people read it in their own time. The whole suicidal thing, eh. I wish I could deny it. But, you all know what a 10 on the Kip scale is like. What I should do is get some gloves to prevent more holes in the walls and/or broken knuckles. I'm not so big on head banging, I just get really frustrated. I always get the feeling if I hit my head hard enough during one I might die or something. While that wouldnt sound so bad most of the time, one, I'm a "girly man" if you will, two, I use loved ones to keep me calm. Meaning, if I lay down next to mom, I know I wont get to crazy, for her safety. Well...see ya. Thanks again Simon

Title: Re: Letter to Employers & Colleagues
Post by Rosybabe on Mar 7th, 2007 at 1:33pm
Good, Good, Good!!

I could not find better words to describe it..

I already sent it  to all my family and close friends..

Thanks a lot for making it available and in Spanish too!!!

Title: Re: Letter to Employers & Colleagues
Post by Zeitgeist on Apr 15th, 2007 at 6:14am
Sorry if this is aready reported. The URL to Michigan Head/Pain & Neurological Institute ad the end of the letter is dead.

The new URL is START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

Title: Re: Letter to Employers & Colleagues
Post by neetnut on May 22nd, 2007 at 1:44am
I love that letter!!

Title: Re: Letter to Employers & Colleagues
Post by MR_FLOOR on Jul 2nd, 2007 at 4:45am
Thats what I call in a nut shell.




Dave

Title: Re: Letter to Employers & Colleagues
Post by southwalessunshine on Jul 9th, 2007 at 3:21pm
This is an excellant letter.  i've never really been able to put an attack into words.  My partner has seen me at my worst but I often freeze alittle when i'm aware of him being in the room.  Now i can get him to read this and it should help him out.  he really is understanding but you can't totally understand if you're a non sufferer can you?  Thanks  x ;)

Title: Re: Letter to Employers & Colleagues
Post by assaultme on Aug 25th, 2007 at 9:52pm
Hmmm, I see there are those who have considered the very thing I had to deal with. That is your personal responsibility to your employer. I came here a few days ago after being mis-informed about CH. I was told there is absolutely nothing that can be done to control the situation. I was in a panic...absolutely. After I got educated by some helpful members, I know it will be no problem to save my job.
 Everyone thinks differently and has a different job and ability to work around this at work. My deal was that I have a responsibility to my fellow workers and company to run my crew as efficiently as before and safely. Any decent company who values you as a good and profit-making employee should be able to work with you on it. I was torn as to how to approach my employer with this. Please don't think I am bragging, I promise you I am not. But I'm very good at what I do. My employer has come to expect my very best every day. I try my level best to provide them with my best work possible. I work with a great bunch of guys and we rely on each other as a team to work profitably and safely. When you use a crane or lifting device to lift tons of metal, you must have a clear head and look out for your partners. It ain't brain surgery, but you can kill someone if you make a mistake. To me, the important part was to let my employer know that I can control this condition where I can function likely as good as before. I admittedly know very little about CH or medical stuff. After the helpful people here clued me in, I am convinced I can do this. My employer wouldn't be afraid about the "suicidal" comment cause they know I'll never snap on other work partners or do anything rash to jeopardize the safety of others. My buddy at work has cancer and he does like me, never lets others suffer because of him. It is just what you must do because others have a right to be safe & work with someone who has  it together.
I don't have to tell you how confusing it is at first when you think you will be compromised at work. But the people here are assuring me that it is something that can be controlled well enough to not be a deal-breaker so to speak.
The suicide thing may frighten other employers tho. These days with people becoming angry at work and harming others, it is a big deal. Our safety meetings actually cover workplace violence etc. It's just something the individual would have to ponder when alerting the employer.
But it's a great letter. I have gone over most of this with my employer, but will likely present them with the letter to give them a better understanding of how things work.
 Thanks for the info. fellow members.
Cheers, Dave

Title: Re: Letter to Employers & Colleagues
Post by assaultme on Aug 25th, 2007 at 10:04pm
I'm sorry...I forgot to say that what I just wrote is only my small experience with this CH condition. Others here may have a very different situation or much worse problem with it.
I know less than anyone here about this CH thing.
Regardless, I sincerely hope what I said can help someone somehow.
Regards, Dave

Title: Re: Letter to Employers & Colleagues
Post by merchant on Sep 6th, 2007 at 6:06am
Unbelievable. I was literally crying as I read this letter. Thank you so much for putting into words what I've been going through most of my life. I try to act so happy and uneffected by this every day to spare my wife. She sees me daily and sees the pain whether I hide it or not... but it's easy to joke off the level of severity. I think I may send this to her and maybe a couple others.

I'm hesitant only because there's kind of an unspoken understanding that she knows I'm in pain, but it's comforting to her/us that I'm not in THAT much pain. I am, though, and hopefully this letter will give her better insight for all the things I try to protect her from.

I've been to specialists in many places, and many have tried to treat it as migraine and find a quick fix... but that's always short-lived and treatment comes back to CH, however unsuccessful.

It's definitely something you live with and get through it. When people say, like in your letter, "Oh, my aunt has them and she needs to lay down for the entire day in the dark"... I'm thinking... try doing that for 9 months! and do it without sleeping because you're writhing around in pain!

But, of course, you smile and nod because they have good intentions. I would never seriously consider killing myself... not even close... but "in the moment" that's a frequent thought, only b/c there is no answer in the distance, and life surely wasn't meant to be lived like that... but eventually you come back to normalcy and find a little moment of clarity.

Being so bad, for so long, just teaches you to appreciate the good times that much more... you have to stay positive!

I worked a week shy of 12 months for a major cable company in the area. I received top sales awards every month I was there, literally. I was their top performer, team lead and trainer... received employee of the month and employ of the quarter for the entire region. On the technicality of attendance, I could no longer work for them despite my direct bosses wanting to keep me. It was an HR issue. I had no idea about this letter. Since then, I lost a sales job and was literally told, "Everybody LOVES the work you've done the past few months, but we need you to not come in on Monday, get your health in check, and then come back to the company and reapply. We would love to have you back when you get this figured out." I couldn't believe it.

I fear more and more for my marriage every day as she is 1,000 time supportive, but I fear is at the point where her family is saying "see, I told you he'll always be sick"... and I don't want that to win her over. I need to find a way to hold a job, and hopefully this letter helps going forward. Right now, I'm lost and clueless, and just dumbfounded that exceptions can't be made for top job performers.

Thanks again for this letter! :D

Title: Re: Letter to Employers & Colleagues
Post by littlefoot on Sep 7th, 2007 at 2:26pm
This is for Merchant.  You might want to check into the Americans w/ Disability Act aka ADA laws.  I don't believe you can be let go, if you are performing the "essential functions" of your job, and essential does not include being a "top performer".

I worked as a vocational rehabilitation counselor for 15 years and saw/heard of many law suits that were won.  I doubt if you want to work for that employer anymore, but you may get a nice little settlement out of it and teach them a lesson on disability rights.  

There are some really great ADA lawyers out there.  I would contact one and see what they have to say.

Best of luck,
littlefoot

Title: Re: Letter to Employers & Colleagues
Post by merchant on Sep 7th, 2007 at 3:25pm

littlefoot wrote on Sep 7th, 2007 at 2:26pm:
You might want to check into the Americans w/ Disability Act aka ADA laws.


I hadn't thought about this... wouldn't I need to be registered somewhere as Disabled? The only time I've ever been registered as Disabled was in college, and that was with the University, not the government...

I remember thinking it was awfully fishy that JUST before my 12 months, when they told me the FLMA would kick in and nobody would have to worry about anything anymore... it ended. Very frustrating.

I have a friend whose interested in that kind of law... I will ask him what he thinks and go from there :) Hadn't crossed my mind but I'm curious now if there's even a case for it. May be good to know going into the next employer.

Title: Re: Letter to Employers & Colleagues
Post by assaultme on Sep 8th, 2007 at 2:20pm

merchant wrote on Sep 6th, 2007 at 6:06am:
I worked a week shy of 12 months for a major cable company in the area. I received top sales awards every month I was there, literally. I was their top performer, team lead and trainer... received employee of the month and employ of the quarter for the entire region. On the technicality of attendance, I could no longer work for them despite my direct bosses wanting to keep me. It was an HR issue. I had no idea about this letter. Since then, I lost a sales job and was literally told, "Everybody LOVES the work you've done the past few months, but we need you to not come in on Monday, get your health in check, and then come back to the company and reapply. We would love to have you back when you get this figured out." I couldn't believe it.

:D


Merchant:
 I read what you say and quite frankly, it reads like something I sat here & wrote myself. I'm very sorry to hear the CH has cost you a job or two. I came here a few weeks ago and I was absolutely frantic. My job may be in danger. We define ourselves often by our work. I absolutely know what it is like to fear losing identity or wasting skills.

 You have a great many skills, I know the disgust associated with the fear of never being able to share those skills. It's not some narcissistic belief that the world will collapse without you. It's all about the disgust associated with working your butt off, only to have some stupid blood vessels destroy everything you built.

 The people here humble me in the way they sincerely want to help. I got lucky and things are under control beyond my wildest expectations.....mostly thanks to those here.


  What you wrote hit me like a ball bat upside my head.
I cant help all that much and it may not mean much....but I get it and am pulling for you.
 Cheers & good luck.
Dave

Title: Re: Letter to Employers & Colleagues
Post by mdorr on Oct 9th, 2007 at 9:28pm
What a great letter. Thank you so much for your effort. I have already forwarded it to many friends and loved ones

Title: Re: Letter to Employers & Colleagues
Post by billlmack on Jan 12th, 2008 at 1:21am
I've had this letter for a while. I gave it to my employer and i've mentioned CHs to him a few times, but as only we know no one will or can ever understand pain of  that level so i don't really go into detail.  This letter sums it up perfectly.  
As for our friends that lost their jobs because of the beast; a decent lawyer should be able to bring some awareness to your plite, just be aware of employers rights.

Title: Re: Letter to Employers & Colleagues
Post by Stinger on Jan 21st, 2008 at 7:03pm
I wish I had this letter when I was working.  It was so hard to explain to my boss and everyone else that if I got up and walked out on a meeting it was because of my CH.  Looking back, I don't know how I made it through my cycles with the headaches and heavy drugs.  Now that I am retired, I guess I can just pace my house and yard.  I printed a copy of the letter for my wife.

Title: Re: Letter to Employers & Colleagues
Post by Lebowski on Jan 23rd, 2008 at 2:47am
Love this letter!! Printing it out at work right now and printing one for my wife.

Title: Re: Letter to Employers & Colleagues
Post by outofcommission on Feb 12th, 2008 at 3:02am

wrote on Jun 10th, 2005 at 7:14pm:
Sue!!...you cant be fired because of a disability

no but they can fire you for other stupid shit. i took a previous employer to court and won. i was eating cheese and crackers by candlelight three months later but he didn't one over on me. and i worked for this mans father for four years. i guess my headaches were inconvenient for him. thats ok though. now i'm doing something thats way more enjoyable..... and i get cruise around and meet some of you guys.  ;)  


                                                                                johnny

Title: Re: Letter to Employers & Colleagues
Post by outofcommission on Feb 12th, 2008 at 3:18am
that letter been around for a while too hasn't it? anybody know how old that letter is? thats a pretty good description too.

Title: Re: Letter to Employers & Colleagues
Post by DennisM1045 on Feb 13th, 2008 at 6:52am
I love that letter and used it at the last place I worked and at my current job.  Initially I was using O2 in an HR office but that had its drawbacks.  So after deciding to use O2 in my office I wrote this to the folks that work in cubes right around me.  The response I got was 100% supportive.

-------------------------------------------------------------------

I’m writing to let you know about something that I’ve been dealing with for a long time – 12 years to be exact.  Cluster Headaches are a rare and very painful neurological condition.  Attacks come in clusters (hence the name) and for me they occur twice a year in cycles that last anywhere from 8 to 12 weeks.  They visit me in late winter and again in late summer.  While most of my attacks come at night I do get them during the day when my cycle is peaking.  

During an attack I experience a searing, burning pain that centers behind my right eye.  When an attack comes on, it does so quickly without more than a few minutes warning.  During an attack it is impossible for me to communicate coherently with anyone.  I’ll be ok.  There is nothing you can do to help.  Just leave me to deal with it and you’ll hear the sound of my keyboard again in no time.

The best form of treatment for aborting a Cluster Headache is Oxygen therapy and energy drinks.  It usually takes one or two treatments of 15 minutes each to abort the attack.  When that fails I have Imitrex Injections to fall back on.  I much prefer the Oxygen as it has far fewer side effects.  Last cycle (August - November) I kept an Oxygen tank down in HR and would use it there in a spare office.  However there were a couple of problems with this strategy.  1) HR isn’t open early in the morning or after hours and on more than one occasion I was locked out when I needed to get in. 2) Delaying treatment while I fetch my backpack and make the walk down there also makes my pain worse and last longer.

So this cycle, with your understanding and acceptance, I would like to begin using Oxygen here in my office.  I’ll keep the tank in a file cabinet and will only need to drag it out when an attack comes on.  I didn’t want to begin using it without giving my you a heads up on what I’m doing and why.  So don’t be surprised if you hear the sound of Darth Vader or the clanking of my cylinder and regulator as I piece the rig together.  I promise to be as quiet as possible.

Please feel free to come by and ask any questions you may still have.  Also, you can read more about this condition at START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE and START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE.

-Dennis-

Title: Re: Letter to Employers & Colleagues
Post by C19M82S on Feb 14th, 2008 at 7:57pm
Ok, I am new to the board first of all.  I am a 25 year old female from Louisiana and was diagnosed with cluters about 3 months ago.  I was in the hospital for a week and then placed on short term diability for 6 months while the doctors tried to figure this all out.  I have just returned to work about three weeks ago, and I love the letter because it is so informative. Here is my problem: I have several co-workers who know nothing about clusters, and have diarrhea of the mouth (snide remarks about me leaving early one day or they come to work when they have a "little headache").  I have presented them with the letter and their response is they don't care to know anything about them, but the don't seem to understand where I am coming from.  Does anyone have anymore suggestions on how to handle these people?  Thanks in advance for any help!

Title: Re: Letter to Employers & Colleagues
Post by outofcommission on Feb 15th, 2008 at 3:42am

C19M82S wrote on Feb 14th, 2008 at 7:57pm:
Ok, I am new to the board first of all.  I am a 25 year old female from Louisiana and was diagnosed with cluters about 3 months ago.  I was in the hospital for a week and then placed on short term diability for 6 months while the doctors tried to figure this all out.  I have just returned to work about three weeks ago, and I love the letter because it is so informative. Here is my problem: I have several co-workers who know nothing about clusters, and have diarrhea of the mouth (snide remarks about me leaving early one day or they come to work when they have a "little headache").  I have presented them with the letter and their response is they don't care to know anything about them, but the don't seem to understand where I am coming from.  Does anyone have anymore suggestions on how to handle these people?  Thanks in advance for any help!


i remember going up to Michigan with two other guys to do a tile job. it was a screaming ride. when i was working and physical, the beast stayed away. when we went back to the motel room is when i got hit. the crew leader made me get my own room and my boss through a fit. all these guys had seen me during a peek attack. it's not like they didn't believe me, i was a nuisance. this is same company that fired me and i took to court. if your coworkers can't except your condition, you have done everything you can to explain it to them. beyond that worry about yourself. be selfish. after all it's your head and you are the one in extreme pain and you have enough to worry about.
i tried really hard not to cuss. this ex employer is a sore subject with me.

Title: Re: Letter to Employers & Colleagues
Post by KatzPurr on Mar 26th, 2008 at 9:10pm
I couldn't have written it better myself and have already sent the letter to several family members and friends.

Title: Re: Letter to Employers & Colleagues
Post by tnpruby on May 16th, 2008 at 12:32am
>:(
Having problem Downloading :-/, Can someone send it  to me email? tnpruby@aol.com

Title: Re: Letter to Employers & Colleagues
Post by debOUCH on May 16th, 2008 at 11:31pm
ck ur emails..................

Title: Re: Letter to Employers & Colleagues
Post by angela.lambert on Aug 17th, 2008 at 12:37pm
This is the most valuable piece of information I can give to my friends and family about CH.

Thank you Simon for writing such a winner.  And thanks Eric for posting this amazing gift.  You guys ROCK  :D

angela

Title: Re: Letter to Employers & Colleagues
Post by AElf on Aug 19th, 2008 at 1:29am
This is a great letter!  My husband will be using it frequently in his work.  It is very difficult to explain this disability and this letter will make it easier.  
Thanks!  AElf  :)

Title: Re: Letter to Employers & Colleagues
Post by Ade on Nov 26th, 2008 at 7:07pm
Fantastic! I'm printing this off tomorrow.

I could have done with this 4 years ago, it would have saved me from losing at least one job.

Hang in there people!

Ade.

Title: Re: Letter to Employers & Colleagues
Post by mstfr on Feb 3rd, 2009 at 10:30pm
:) :) :) :)

I am new to this site, and your letter is a true blessing at this time!!

Thank You!! Misty

Title: Re: Letter to Employers & Colleagues
Post by Rangermark on Apr 21st, 2009 at 1:43am
I have never spoken to anyone with CH before today, and i want to let you know that it is a relief to hear someone else say the things you have said in this letter.  I am awake now. awaiting another fight with the demon tonight, I will at least know that you understand what i am going through.  I hope you realize how much it helps me to know this.


thank you very much


Mark

Title: Re: Letter to Employers & Colleagues
Post by gizmo on Jun 3rd, 2009 at 10:43am
A German version is available at START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

Oliver

Title: Re: Letter to Employers & Colleagues
Post by Joni on Aug 16th, 2009 at 3:48am
It is a comforting letter for me to read, however, I would be very cautious about giving it to an employer, co-worker, or even casual friends due to the negative connotations associated with CH.  Only the people closest to you that you trust need to know the full range of possible dysfunctions.  I would give the letter to those closest to me and revise it for the others.  I will send it to my family members since there are 10 of us clusterheads spanning 5 generations.  

Title: Re: Letter to Employers & Colleagues
Post by Larry Stroud on Feb 17th, 2010 at 5:36pm
I think this is a great letter.  I especially liked the part at the end of things to avoid saying.  That got me to laughing and we all need a little laughter.

Thanks for this valuable asset.

:)

Title: Re: Letter to Employers & Colleagues
Post by rascleo on Mar 13th, 2010 at 5:50am
This is an excellent letter. I've felt so very frustrated trying to explain what I'm going through to my principal and colleagues.I will most certainly use the letter. I'm in such a bad state, I'm not working, however this can't go on for long, as I have to pay $110.00/day for my sub. I am now going through 5 procedures of injecting blockers into the nerves in my brain. I am so anxious for something to help, I don't know how much longer I can go on like this.

Title: Re: Letter to Employers & Colleagues
Post by Simon on Apr 11th, 2011 at 9:45pm
Good God! Amazing to see that this is still doing the rounds. Ashamed to say I haven't been here for a few years, but what do I see popping up before me?!

Glad this is still having some use for people - certainly didn't think when I wrote it in 2001 or so that people would still be using it ten years later.

Sitting here at 2.30am UK time just winding down from an attack - yes, I'm still getting them - been chronic since 1995 or thereabouts. Suddenly thought, I wonder how ch.com is doing and called into visit.

Hi to any old timers out there - to any who have no idea who I am, suffice it to say that I posted message number 55 here, so been around for a while! Wrote this letter when I was setting up clusterheadaches.co.uk, the precursor to ouch(UK).

I have given this letter (or the original UK English version of it!!) to my employer for the first time in the last year, and was gratified that it made a difference - my boss has been very understanding.

As I've said before, I'm thrilled if people want to use it, and feel free to edit out bits that you're uncomfortable with - all I ask is that you keep my name on it somewhere - just a little conceit on my part to make me feel that I have made a difference!

Simon (aka Dolly!)

Baa

Title: Re: Letter to Employers & Colleagues
Post by rustystp on Sep 20th, 2012 at 9:13pm
What a great letter. My wife just read. She has seen a full attach of mine and has cant  believe sometimes how I make it to work every day. I have 3-4 attcks a day two of which I am at work for. And I just got proper meds as  dr thought it was a sinus infection. But MRI and Catscan ruled that out.  Thank god for Nero

I am learning alot from this site.  Soo glad I found it.. Thank you all

Title: Re: Letter to Employers & Colleagues
Post by Sledge007 on Mar 21st, 2013 at 11:40am
Thank you Simon for writing this letter. I have a hard time explaining myself to others and this, very bluntly, puts it out there in black and white.

Title: Re: Letter to Employers & Colleagues
Post by SKI74 on Sep 1st, 2013 at 1:31pm
I am so thankful I found this. Being AD Military some people don't understand or even know about CH's. Only in one cycle have I had it come on at work. I was lucky at that time I worked with some great people who to a look at what was going on and could kind of understand why I locked myself in a dark room.

Well, now the beast is back and I am at a different base. So this letter I hope will help them understand why I'm tired, miserable, and if it does happen at work why I disappear quick.

Thanks again for this.

Title: Re: Letter to Employers & Colleagues
Post by Elle on Dec 13th, 2013 at 1:12am
Thank You I am so giving this to my boss tomorrow. I have been going through it pretty bad lately and just missed allot of work. I'm back now , but just want them to understand me... Even just a little bit. This letter is awsome!

Title: Re: Letter to Employers & Colleagues
Post by bree38 on Mar 7th, 2014 at 4:41pm
Excellent letter.

Title: Re: Letter to Employers & Colleagues
Post by NancyP on Mar 13th, 2014 at 4:13pm
Thank you so much for posting that letter Simon!  I am an episodic sufferer (usually only lasted a few days) and had the first big blow-out episode which lasted for a little over 6 weeks about a year ago.  It was the first long term one that my husband had to also endure (we've been married for 17 years).  He still doesn't quite understand the agony these bouts inflict.  He equated the pain I was going thru with the migraines that his mother gets.  I think this letter will help him understand that there is a BIG difference! 

Also thanks to everyone on this site.  I'm new to this forum, but not new to being a "ClusterHead".  I've had these periodic episodes for over 30 years, but wasn't properly diagnosed until last year.  It's a relief to find out I'm not as crazy as I thought I was.

Title: Re: Letter to Employers & Colleagues
Post by Redd on May 13th, 2014 at 10:53pm
Something happened to the link, and it now redirects to some other site, and the page is not available.

Has it been hijacked?

Title: Re: Letter to Employers & Colleagues
Post by shoot on May 15th, 2014 at 2:37am

scarmig wrote on Jul 29th, 2005 at 3:28pm:
For those who don't have Word, I've htmled a copy onto my website.  

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

Feel free to use it, copy it, or link to it, though i make no guarantees on how long it will stay put.  :)


this link is live was just there

Title: Re: Letter to Employers & Colleagues
Post by Mike NZ on May 15th, 2014 at 8:54pm

shoot wrote on May 15th, 2014 at 2:37am:

scarmig wrote on Jul 29th, 2005 at 3:28pm:
For those who don't have Word, I've htmled a copy onto my website.  

http://www.scarmig.com/cluster.html

Feel free to use it, copy it, or link to it, though i make no guarantees on how long it will stay put.  :)


this link is live was just there


Just in case the link dies, here it is with some formatting applied:


Quote:
A note for those who know a C.H. sufferer:

Someone you know has probably given you this note to explain a little about a condition they suffer from called Cluster Headache Syndrome. It is likely that before you met them, you had never heard of this condition, which, after all, affects less than .05% of the population.

The term "headache"; is very misleading. Your friend or coworker is not experiencing the typical symptoms of familiar primary headaches, such as Migraine and Tension. The cause and cure of Cluster Headache Syndrome are unknown.

Cluster Headache sufferers fall into two categories: Episodic and Chronic. Episodic sufferers experience headaches in clusters for a period of typically six weeks to six months and will go into periods of remissions typically lasting from six months to 3 years. Chronic sufferers experience no periods of remission lasting longer than two weeks in the period of one year.

A CH attack is unilateral (one sided). Pain may begin around one eye, "Like a nail or knife stabbing and piercing" the eye, or as if someone "were pulling out" your eye. It may be accompanied by a tearing or bloodshot eye, drooping eyelid, dilated pupil and nasal congestion or runny nose on the side of the attack. It can radiate from the eye to the forehead, temple, ear, cheek, jaw and neck on the same side. The pain of a CH has been described as piercing or boring and so excruciating that most victims cannot sit still and feel compelled to rock in a chair, walk back and forth, or bang their heads against something.

The pain is so extreme that Dr. Peter Goadsby, Professor of Clinical Neurology at University College London, and the worlds leading researcher on CH has commented, "Cluster headache is probably the worst pain that humans experience. I know that's quite a strong remark to make, but if you ask a cluster headache patient if they've had a worse experience, they'll universally say they haven't. Women with cluster headache will tell you that an attack is worse than giving birth. So you can imagine that these people give birth without anesthetic once or twice a day, for six, eight or ten weeks at a time, and then have a break. It's just awful." Most CH victims experience these attacks 2 to 10 times daily. The pain quickly escalates from no pain to unbearable pain within five minutes. The pain subsides in the same manner. Attacks can last anywhere from 30 minutes to 3 hours or more.

A curiosity of Cluster Headache Syndrome is that both the individual attacks and the clusters themselves can have an almost metronomic regularity - attacks starting at a precise time of day or season are typical. Doctors believe the source of CH is keyed to the hypothalamus which regulates sleep and pain in the body.
It is a headache, in that the pain is in the head, but that is really where the similarity ends. The name itself leads to confusion, as people immediately think of it as something that can be cured by taking a pill, or by thinking of it as a migraine.

How is your friend affected?

This will vary enormously, and, surprisingly, you will almost certainly never witness a full-blown attack. Seeing someone in that state can be quite terrifying. Sufferers are reluctant to allow anyone else to see them at that point, for three main reasons: first, with family and friends, it is simply to avoid them having to see something which, as they are powerless to help, is very upsetting; second, no-one is keen to be seen in a state where they will scream, cry, pace, hit their head repeatedly and generally be uncontrollable - dignity does matter; and three, coping with the attack is wearing in the extreme, and having to cope with other people around is just not possible for most.

In addition, the cumulative effects of repeated attacks and the medications used can lead to tiredness, irritability and an occasional loss of temper. Depression is quite common. Some individuals lose their jobs, and even partners and homes. That said, because having to cope is part of the nature of the condition, most sufferers will "get along" - they have to be quite strong to survive.

Most can be helped by medication, but, because the cause of the illness in unknown there is no cure. The medications often mask or reduce the symptoms, but do not remove them. Many of the medications have difficult long and short-term side effects.

What can you do to help?

When an attack hits, there is nothing anyone can do, unless the sufferer requests help. The best thing is to stay well away. Afterwards, a quiet word is probably a good idea. You may find the sufferer will talk about what he goes through if you ask - he may appreciate the opportunity to explain. Sympathy will be appreciated, certainly, and, if you are working with someone, make sure that you do not give any reason for them to think that you blame them for the inconvenience they may have caused. Most will be keen to get on with things, and repay any efforts you have made to cover for them, if the nature of the work allows.

Some misconceptions:
  • "I had one of those once" - no-one ever has one cluster headache
  • "My aunt has migraine too" - migraine is nothing like a CH.
  • "Can't you just take a tablet and lie down?" - No is the answer, most sufferers cannot lie down.
  • "I know an acupuncturist/herbalist/allergist/chiropractor/spirit medium/etc who cures cluster headaches!" - No offense, but that's not how this condition works.

To learn more about this disorder, you may wish to visit the following links:
  • START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE
  • Cluster Headaches START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

Thank you for supporting your friend. This can be a very frightening disease and your encouragement and understanding is an important and vital factor in helping to manage CH.

Original draft of this letter written by Simon Bower for START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

Title: Re: Letter to Employers & Colleagues
Post by Biker Corny on Jul 2nd, 2014 at 10:37am
Unfortunately when I click on the link for Simmons letter, I get a page not available error from the Cluster Headache Support Group web-site. I would really like to see the letter. Any suggestions?

Title: Re: Letter to Employers & Colleagues
Post by Mike NZ on Jul 2nd, 2014 at 8:32pm

Biker Corny wrote on Jul 2nd, 2014 at 10:37am:
Unfortunately when I click on the link for Simmons letter, I get a page not available error from the Cluster Headache Support Group web-site. I would really like to see the letter. Any suggestions?


The post above this one has the full text of the letter.

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