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10 Tips for supporters


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#10 !!!!!!

I was talking to my shrink yesterday about my PTSD. And I said the biggest issue I have being sick with this invisible disease is people don't believe you.

Its so hard to wrap their head around the word "headache"

If I said cancer,diabeties....people correlate...

CH...blank look of yeah right....

At present i have a broken foot. I was clearing snow off my car at the mall the other day and I have an air cast on. These two university girls looked at me and to eachother...

"oh poor bastard" That sucks" as I think to myself...This is the 6th bone I have broken in 2 years. Its nothing...really.

but if I said hey girls I suffer from headaches...they would either laugh or offer me an asprin.

So thank you for posting this....#10 is most important to me

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Hi CHS and Bundy

I agree, #10 is the big one. The one that means the most and is also often the hardest to do.

It's not only invisible illnesses that suffer unbelief. Left-handed people suffered for years, and were forced to write with their right hand. The homosexual and transsexual communities also suffer. All of these things, as well as headaches, you can't prove with a blood test or MRI scan. There is no visible indicator to solicit sympathy.

Which sucks because society seems to need that visible indicator to grasp the reality of the situation.

Perhaps we could issue every cluster sufferer with a taser. And when people don't believe clusters are painful, we could say, 'a cluster attack feels like this' - ZAPPPPP!

OK, perhaps not.

Then again.... http://www.taser.com/products/self-defense-products

Disclaimer: I do not condone or promote the use of tasers to convey the pain of a cluster attack. I'm just joking. LOL



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those are great tips but i think my sympathy is wearing off at home with wife and kids< grown up> friends just gave up on me.My wife has become desensitised to my attacks.She even told me to take my disease and get out. 

I am very sorry to hear. I been there....ex wife.

I recall many times, her slamming the door on me saying "I can't deal with this sh*t" slamming th bedroom door and leaving me on the floor screaming. When she left...I said don't let the door hit your butt on the way out...

As for my so called fake friends. My so called fake friend sof 25 years...well listen to this...

I am laying in bed in recovery at the hospital on my 2nd of 4 brain surgeries. My new wife is crying....I ask...is it the  28 staples in my head?...no she says....is it my shaved head?....no she says....is it that im sick?....no she says....

then what is it?.....where are your friends?



no card,no text,no email, no get well, no visit, nothing.



again I can empathise with you. I am home pretty much 23/7. no one visits me, calls me or nothing . All I have mis my family. my wife now who I am so blessed to have, my son and folks. thats it.

Im ok with it. Id rather have no friends than fake friends.

I have lots of online friends but no buddies to call me up and do car stuff with...thats ok...

I know how ya feel.

The disease has taken far more than my health

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