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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> How do you handle people's reactions?
        
(Message started by: Charlotte on Mar 6^th, 2006, 8:55pm)

Title: How do you handle people's reactions?
Post by Charlotte on Mar 6^th, 2006, 8:55pm

This is the only place I can consider full disclosure of what clusters do to me. I don't even need to disclose because we are all there.

My sister told me I was lucky to have clusters because they are short, and I said nothing.

My migraine friend said, "I thought your medicine worked" and I said nothing.

My husband hurts so much for me that I could never tell him anything in addition to what he sees.

I let my work place know about the headaches, but I've never let them know how bad it can get.

I would not be able to give anyone the letter to friends and employer. I tried to talk to one of my new work friends who is supportive about pain. She lives with someone in constant pain and pain is universal. I had to draw back at a certain point - you know the one, the other name for clusters. People do freak out.

Just because cluster headaches are called suicide headaches does not mean that we will do that. My concern is that our pain level would be so high that we might not be carefull enough about our safety as we should. Especially, I hope people will be careful not to be driving at the worst times and will pull off the road if you need to and wait a few minutes.

I am sorry that we have this bond, but I am grateful to find you.

Let me know how you handle this. I'll check back in tomorrow.

Thanks. Charlotte

Title: Re: How do you handle people's reactions?
Post by Linda_Howell on Mar 7^th, 2006, 12:51am

Charlotte, we handle it because the alternative is unacceptable.

We handle it with help from those wonderful people we call our supporters.

We handle it because most of us have children and we have to... for them.

We handle it because the pain will pass.

We handle it because we are the strongest group of SOB's in the world.

Linda

Title: Re: How do you handle people's reactions?
Post by Kate in Oz on Mar 7^th, 2006, 7:03am

Hi Charlotte,

How do we handle people's reactions??? Good question. Personally I don't handle it too well.. especially when people have no idea and say things like - maybe you need to drink more water... maybe you need to get to bed earlier... try this/that otc med or this herbal remedy. AGH

I handle CH so much better now just by knowing that this place exists. To know that there are others who understand the pain, know the fear etc etc.

Prior to finding this site last year I was in a hell of sorts - being so alone in pain - who else can understand?

I laughed, I laughed! during my last cycle - unheard of. This place helps me cope, my family and friends may not understand and now because I have this place - I don't feel the need to try and have them understand. I am no longer alone with CH.

Wishing you all the very best,

Kate

Title: Re: How do you handle people's reactions?
Post by Beastfodder on Mar 7^th, 2006, 9:28am

To a huge extent I try not to have to handle other people's reactions.

95% of people won't see past migraine, plus there's the huge risk of sounding wet and needy once you get into explanations. From the few times I've been seen when getting hit it's pretty clear I need some space and have temporarily lost the odd social skill.

(Family, friends and anybody here no problem - they're allowed to help when you're a bit wet and needy. )

When you overlay that with the fact that 'mind bending' hallucinogens are my first port of call as an abortive these are conversations that are best unsaid.

Title: Re: How do you handle people's reactions?
Post by Guiseppi on Mar 7^th, 2006, 11:20am

I know education is our biggest ally but I choose to just ignore most comments and don't even try to educate. You've heard them all: maybe you're just too tense, you should relax more, it's probably just your sinuses, my Aunt Flo get's bad sinus headaches...........and a million more. I just smile, nod my head, and try not to wish just one CH on them!!!

Guiseppi

Title: Re: How do you handle people's reactions?
Post by wing_nut on Mar 7^th, 2006, 3:07pm

Hey Charlotte,

I've been episotic for about 25 years. Just recently I have decided to just keep it to myself. The people who have seen me and have to hold my head are the only ones who truly understand. (3) The rest don't get it and never will. Do I sound bitter? I guess I am, slightly. just pisses me off when you hear things like "oh I had one of those once" or " I know, when I get a migrain...." Except for those us here, People don't get it!

Title: Re: How do you handle people's reactions?
Post by Richr8 on Mar 7^th, 2006, 5:52pm

I gave a copy of Simon's letter to my employer and showed him the video on clusterbusters. He now totally gets it and makes every accommodation for me as needed. As for the rest of the world, screw 'em! They just don't get it, and never will. I come here for comfort where I know people understand and quit trying to convince the rest of the world how bad they are.

Title: Re: How do you handle people's reactions?
Post by sandie99 on Mar 9^th, 2006, 4:17am

Charlotte,

If I'd get a euro each time someone (that includes my mum who has seen me getting hit) mentions that "it's just a headache"/ "she's got migraine"... ::)

Personally I have told to others about ch if it was necessary. The response is sympathy, but that won't last long as people forget. My friends... I've explained them about ch more often than I'd like to recall... I've accepted the fact that they will never get it. Luckily for them I have had my worst hits when they weren't around. It's not a pretty sight for anyone to see.

I'm a student and my professors have understood ch, which was nice for change. I got extension to my deadlines when I really needed it. And my boyfriend did his own reseach as soon as I mentioned ch (although I've been PF since we met) and I think that he's the only one in my close circle, who really understands it.

I like to get the word out about ch, though. When somebody asks me questions about it, I'll answer. I don't wish ch pain to anyone, but I'd hope that we'd get the same kind of understanding and sympathy that other people with pain do get. That's why I like to mention that I have Horton's neuralgia instead of clusterheadaches. Different name, same devil...

I do hope that the people in your life will understand you & give you the kind of support you need. :)
And your clusterfamily will always be here for you!

Best wishes & PF days,
Sanna

Title: Re: How do you handle people's reactions?
Post by mynm156 on Mar 11^th, 2006, 2:10pm

on 03/07/06 at 00:51:02, Linda_Howell wrote:

AMEN LINDA!!! [smiley=thumb.gif]

I know how you feel. I know we all do. we have to just keep moving on in search of relief and hope that we can contain the next attack as best we can.

Good Vibes

Your Brother in Pain

MYNM156