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caseyflear

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getting them to understand can be hard to do.
Oct 9^th, 2009 at 10:53am

its hard to explain to people the exact amount of pain i am actually in during and attack, i dont no how to explain to them to a level that they will understand and because of this people just think "oh she has something like a migraine" and what makes it worse is that people dont no how to react when they see it happen so they feel like they cant help. Has anyone else found a way to get people to understand without having to log onto a laptop or something or print pages off and give a speach, just to simply explain the ammount of pain to someone who's never experianced this. what makes it worse is when people try to relate my saying how they had a horrible headache earlier on in the day but took a paracetamol and it went away, this makes me angry and slightly envious, i wish i could take a paracetamol and my pain went away. so any idea's people how i can help my friends and family to understand the pain i go through without actually putting them through incredible amounts of torture.
so id love to hear all your suggestions,
hope everyone is doing well and not in to much pain.
casey

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Bob Johnson

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Re: getting them to understand can be hard to do.
Reply #1 - Oct 9^th, 2009 at 11:01am

On the OUCH site (left) you will find letters to give to friends/employer which explains CH.

The advantage of giving these letters is that they are a coherent explanation of a complex disorder AND you avoid the emotional tension/conflict/distress of working to convince the other person.

So much of our distress arises from trying to "win" the argument (getting them to accept our situation) that it's not worth the effort. Give the explanatory statement and walk away from the discussion. IF they want to follow-up with questions--then you have a chance.....

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« Last Edit: Oct 9^th, 2009 at 11:02am by Bob Johnson »

Bob Johnson

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Marc Ex Member Gender:	Re: getting them to understand can be hard to do. Reply #2 - Oct 9^th, 2009 at 11:02am Send them this link: Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or And this one too: Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or Marc
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Lottie

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Re: getting them to understand can be hard to do.
Reply #3 - Oct 9^th, 2009 at 11:07am

Don't get angry with people who do not understand. It serves no purpose and it's a waste of energy. Spare the energy you've got, you're going to need it!

Now as to try and get people to understand what you're going through... I sometimes say it feels like an orthopedic surgeon operating on my head, without an anesthetic. Or like someone's stabbing away with an ice pick on my eye.
And there's an excellent letter from someone at OUCH going around. I don't have the link at hand, but maybe someone who does will post it.

PFDAN, Lottie

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Lottie CH.com Veteran Offline Posts: 112 Gender:	Re: getting them to understand can be hard to do. Reply #4 - Oct 9^th, 2009 at 11:09am It seems Bob and Marc were way ahead of me...
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gizmo CH.com Hall of Famer Offline Posts: 522 Germany Gender:	Re: getting them to understand can be hard to do. Reply #5 - Oct 9^th, 2009 at 11:11am Direct link to the OUCH letter: Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or
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Callico

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Re: getting them to understand can be hard to do.
Reply #6 - Oct 9^th, 2009 at 2:29pm

When I feel people are HONESTLY trying to understand what it is Iask if they have ever had a brain freeze from ice cream or a cold drink. Of course they have. I tell them CH is similar to a brain freeze, but they have to keep eating or drinking as fast as they can for 45 minutes or longer. When they start to comprehend that I tell them that is about a level 2 or 3. It's been as close to something they can relate to that I can find, and it is in the same area and similar pain to what I deal with on a very mild scale.

Jerry

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"Political correctness is a doctrine, fostered by a delusional, illogical minority, and rabidly promoted by an unscrupulous mainstream media, which holds forth the proposition that it is entirely possible to pick up a piece of dung by the clean end." Texas A&M Student (unknown)

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Guiseppi

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Re: getting them to understand can be hard to do.
Reply #7 - Oct 10^th, 2009 at 11:10am

Jerry's is my favorite explanation. A Brain Freeze........that keeps building for 45 minutes!!! Cheesy

But as others have said, it's a frustrating endeavor because unless they've had a complicated labor and delivery, or an accidental amputation of a major limb...that have nothing to even begin to compare it to. Leaves them in the same frustration you're in!

Good news, everyone here understands. Hang in there.

Joe

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"Somebody had to say it" is usually a piss poor excuse to be mean.

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bejeeber

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Re: getting them to understand can be hard to do.
Reply #8 - Oct 10^th, 2009 at 2:37pm

I think I might just start sending video links if I have to explain it to anyone anymore.

In the past I've thought that a few short mentions of "suicide headache" and "it's considered by some neurologists to be the worst pain known to mankind" could get the message across, but then I start hearing back about how they think it's just like their wife's migraines, or how it could very well be sinus headaches and that I should look into that. Roll Eyes

Or just lately "we all have our stuff we have to go through". The thing that I really hate about that one though is that there's some pesky truth to it, and I can't honestly say that at this point I would trade my very managed cluster episodes for some of the severe chronic problems others around me have.

I guess I would've traded the CH for just about any non fatal affliction though back in some of the most desperate pre imitrex times. Glad now that I didn't. Shocked

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« Last Edit: Oct 10^th, 2009 at 6:30pm by bejeeber »

CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

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caseyflear

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Re: getting them to understand can be hard to do.
Reply #9 - Oct 10^th, 2009 at 4:38pm

thank you everyone for all your comments i really like some of the descriptions, i've shown some people your comments and that youtube link also. really feeling comfortable with this extra support so thank you again.
people are finally starting to understand a bit more, so im happy well more happy then i originally was.

gonna keep helping my friends and family understand, its nice for them to find some comfort in knowing.

casey

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Iddy CH.com Alumnus Offline Smile Posts: 486 Toronto,Canada Gender:	Re: getting them to understand can be hard to do. Reply #10 - Oct 10^th, 2009 at 8:44pm I hope you get the support from those that are close to you. To see it, is to believe it! All the best.
Back to top	Walk in Peace "If you can, help others, if you cannot do that, at least do not harm them." Dalai Lama IP Logged

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