They just don't get what hubby goes through. I've tried sending them the letter that's on here somewhere explaining about CH and even sending them an email with a link to here. It's like talking to a brick wall. They think hubby is just being a big baby. I can't even call them to vent when I'm upset about it all because it just dosn't matter to them. I need support too sometimes just someone to listen about my worries and my lack of sleep amd feeling like a zombie. No help from there at all. Their solution is for me to leave him until he grows up!  >:(

Ever since he has been going through this cycle, back in March it stared, his own father and sister don't even come around! His mom lives with us and is older. She becomes a nervous wreck from seeing him in pain. I wish these people would just come around for just 1 of his hits and tell me he's making it up!!!! As far as I'm concerned I'm done with all of them. Why should I listen to all of their woe is me's when they can't be there for us when we need them?

Ahhhhh that feel better! Atleast you all are here for us!  :) Thank You!!!!  

Betty there is always an ear around to listen to a vent. we all need to vent at times.

I have no solutions for you  on how to deal with your family, but your husband is lucky to have you as a supporter.  thiis site can be your supporter.

Hoping this cycle ends soon

Vent away!!!  We are very good at listening here.  Most of us sufferers or supporters run into people that just have no clue.

I have been told that the video of me getting hit, has helped a lot of people, to show those that don't understand, what it is like.   Jonny posted it on you tube over a year ago.  

Try to get them to watch it:
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Good luck!

Chuck

Betty,

I'm so sorry that your family behaves like they do.  [smiley=hug.gif]

I'm glad that Chuck posted that link, because I was about to suggest that you'll show your family exactly that - what a clusterhead during a hit looks like. It's not a pretty sight, but our reality. Maybe that will help them understand that the pain and the suffering is for real.

Always feel free to vent - that's why we're here; to help each other out. :)

All the best & PF days to your husband,
Sanna

There is no explaining ignorance and bad attitudes....no excuse for it either.  Shame on them!  You've done your best to educate them....that's about all you can do, Sweetie.

You're a good supporter and we'll all help and support you all...we're here 24/7.

Hang in there....better days are ahead.

Big Hugs,
Jackie

I'm with Jackie here.  It sounds like you're dealing with ignorant, close-minded people who don't want to *know* what's going on.  You can show them the video, but I really don't think it will do any good.  My husband never had any trouble with his family, my family or any of our friends.  Anybody who saw him getting hit never questioned how bad it was, nor did they make any negative comments.

I was lucky, I had friends IRL who were there to listen to me.

Carolyn

Hey Betty,

Unfortunately you can't make people understand what they don't want to see.  That means they are of no support to you.  Don't waste that precious energy on a problem you can't solve.

Turn here for what you need instead.  Like others have said, there is always an open ear and a soft shoulder available here.

-Dennis-

Well you may not get the support from your family, but you definately will here!!  If they won't listen and you have given them all the resources you can for them to understand, then you have done your job.  Be strong for your husband, that's what he needs.  

Your family here will pick up the slack!!  ;)

Steph

They suck, you rule.
Ignorant people are just that ignorant. If not they would listen and have the justified empathy toward their loved one. You wont convince them, they're ignorant. Wait they will come in later and want you to help them. Then you can show them how it's done when family actually cares.
all the best  ;)
thebb

Hi Betty,

Sounds like your family just doesn't want to get it and unfortunately, some people never will.  Sorry you are having to deal with that.

You are a great supporter!!  Feel welcome to come here anytime day or night to vent.  We do understand!!

Hugs,
Beth

Try this: print the letter (make multiple copies), hand it to each family member as the opportunity presents itself, and tell them something like, "I just wanted you to read for yourself what hubby is going through, and I wanted you to understand that this rare condition is documented as one of the most painful experiences known to man."

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
let em read this.
thebb
They likely still wont get it.

Show mummy the Kip-scale and ask her to rate the pain of child-birth.  

Discuss her Kip-score with the ladies here who have both children and CH.

Mummy may be surprised to learn that her little boy really is hurting and not just bunging it on.

Betty,

I'm so sorry about your family.  I can relate to what your going through.  My family recently ganged up on me about my hubby.  He hasn't worked since last November.  They think that he's just being lazy.  I've done the same things as you.  I've emailed them the link to this website as well as the info on the Mayo Clinc website regarding Clusterheadaches.  I don't know if they've read the info or not, but after some of the things that they have said I don't know that I will be so quick to forgive them.  At least we have this website with all of it's wonderful members to listen.  

Jen