C'mon! Let's tell 'em what not to say!
 

Here on this thread http://neurotalk.psychcentral.com/thread163083.html, a few of us were talking about people who are not as understanding as we'd like. Dr. Smith brought up the idea of a buisiness-sized card with a list of things not to say to us that you could hand out to them. I thought that it would be fun to compile a list just for it's own sake, and if some of the entries made it onto such a card, great. If not, it would still be gratifying. I'm sure that not all will universally applicable.

I'll start with some of my favorites:

Maybe if you just exercised more, you'd feel better.

It's all mind over matter, you know.

Have you tried compression socks? (I have PN in my feet--just kill me now!)

:mad::mad::mad::mad::mad::mad::mad::mad::mad::mad: :mad::mad::mad:

I know you all have some gems too--show us what you got!

Six years after my first back surgery
 

ANYONE who knows me realizes my body suffers from constant and permanent nerve pain. The back was healed through all of the interventional stuff.

My least favorite is "So, how's your back?"

Or
 

When I was a teen with acne and people would ask "So, does that hurt?"

Oh, yeah. Cystic acne from age 12. The treatments back then were horrible and useless. Now I see (from other investigations) they're trying megadosing with B5 (pantothenic acid). Results are mixed, but it's one that can't hurt to try.

Doc

Like these? The problem is getting the list down small enough to fit on a card!

Things NOT to Say to Someone with Chronic Pain*
(*alternate: Disabling Chronic Condition)

But you don’t look sick
But you look so good
Maybe if you just got out more
If you’d get out more
If you just got out of the house
You can learn to live with it
You’ll just have to tough it out
It’s all in your head <--- This one's the biggie, right? :hissyfit:
You’re just having a bad day
This will pass
This too shall pass
Just get more exercise
If you’d get more exercise
You just need to exercise more (and lose some weight)
I used to have chronic fatigue too – I just got active & it went away
It can’t be that bad
You can’t be in that much pain
It must be neat not to have to work
It must be nice not having to go to work
You’re so lucky to stay in bed all day
I wish I had time to take a nap
If you got more sleep, you'd feel better
Stop being lazy and get a job
My friend has back problems and still manages to work
You just need to get a hobby to take your mind off the pain
Just be more positive
You just need a more positive attitude
It could be worse
At least it's not fatal
There are people worse off than you
Everybody gets tired
Your illness is caused by stress
It's probably just a touch of arthritis
You’re just getting older
We all get more aches and pains as we get older
You’re just depressed
You just want attention
No pain – no gain!
Just pray harder
I've heard Fibromyalgia is just a diagnosis they give when there's really nothing wrong
When I get migraines, a brisk walk outside always helps take it away
I heard/read about this new product....

Doc

Next time I time travel
 

Will give it a try then. In the meantime, just feel blessed our kids got their Mom's genes in heavy doses.

Well lets hope the operation makes things better.

....."Just quit 'confessing' you are in pain and it'll all be better" "You're bringing this all on yourself you know!"

Thanks alot genious....you have no idea what I say or do in my private prayer life....
I'm not the heathen you think I am.....so ...... please go away http://dl5.glitter-graphics.net/pub/...bjkx9k9ojf.gif

Wait....
 

Is this in response to B5 or things not to say? (or both?) :Hum:

Doc

Ah, but my dear Doc friend
 

You gotta read the whole bloomin post I write if you want to place it in context. Perhaps this is how the Robinson family got into trouble with a stowaway.

The entirety of my context was ...... if there were time travel, I could go back and use the treatment reply you suggested. Followed by our kids did not follow that particular gene path of my line, so they did not have to deal with it, making the thought irrelevant to my family in the present time.

So, I reckon you could say I wa off topic,
Yep,
Moi

Us r sloh 2dae
 

Thanks Mark. I didn`t get it at first either. But I did get acne and all the stupid advice that went with it as a kid too.

What not to say.
 

I thought all the suggestions mentioned were great...Much better to consider from here than hearing them in real life.....It make me think about that over 6 ft man that cussed me out one morning after I pulled my car into the handicapped space....He happened to think I didn't look disabled even though I never even got out of my car....I suppose he had some pain and just couldn't legally park there himself and was upset to see that I could....I suppose that because I worked very hard at smiling, I must have somehow ruined his day, even though it was morning....So I happily replied how I felt sorry for his wife, should he be fortunate enough to have one....Cause he was a true dumb-azz in the sense of the word.....I have resembled all of those quotes typed at one time or another since my injury back in Aug of 07....That I did bring on myself as I was working....Working harder than the two other employees that were sitting on their hineys that very busy Monday morning.....Brought my life as I knew it to a screeching hault....And I became the literal pain in the azz your mothers always warned you about....And I've heard all those other quotes...Even the folks that would tend to go through the motions of " there by the grace of God go I" attitude have thrown a few at me a time or two.....Breaks my heart every time and they act like "what did I do"...When it upsets you....Christmas has passed and I took pleasure in wrapping some gifts for someone that is "helping" me....And wrapping those ackward gifts kicked me royally...Head to toe....And he said, "well you brought it all on yourself"....OMG...Thought I'd just shrink enough to totally disappear forever....Wish I had....Cause it's not getting any better in the world of those that are "helping" me.....The pretending period or the vacation period I used to call it when my son's were younger....Is only less than a month long, for adults too.....Please can't I just shrink enough to disappear, please.....The fires not burnt out of the RSD / CRPS I have to deal with...but the fires burnt out of this fireball......

Actually, I did, but I misread it. What you wrote was, "Next time I time travel" which I read as, "Next time I travel" (mea culpa) which just made it all the more confusing... :Hum:

Doc

Fireball...
 

I agree with you WHOLEHEARTEDLY!
I think because of this, it gets to a point where a person would just WANT to go off and isolate themself.....it just gets too dang frustrating .... :thud:

Rae
:grouphug:

"If you just *insert action here* more..."

The worst I've had it is actually from my own parents who, especially before my diagnosis, were convinced I was bringing the pain on myself. Gotta love it when people think they know more than doctors :rolleyes:

Luckily I have some great friends who understand though.

Also before getting the SCS: "I'm so glad your pain will be all gone".

Hi guys
Those comments are really good and a lot of them I have to agree with. I hate the cheeky buggar who asks what's wrong with you when you park in the disabled spot because that day I'm hardly able to walk.

When my colleagues in work ask how I'm coping there is one girl that has a friend who had a fusion 20 years ago and she always brings her mate up to remind us of the exact same thing and how she decided to go ahead and have her kids despite doctors advice and because she had kids they can't offer her any help now. It drives us all up the wall!

As much as I love my parents they're always tring to fix me, they can't understand why I get so tired and wanna have a snooze at 3.00 in the afternoon. They often suggest that when I feel tired like that, that I should go for a walk then.... Oh you've put on weight, time to get rid of that with your bad back! In saying all that they mean the world to me and do help me now they realise how fu*k*d up I am. My Mam does my ironing, my hubby does almost everything including the cooking and cleaning. My Dad would do anything for me, especially driving me to work or hospital appointments, same with my parents in law.

I like this thread keep the comments coming.

Love Sinéad xxx

:Thats-Funneh: :ROTFLMAO: BITING.... HOLE.... CLEAN.... THROUGH.... LIP....!!!! :yikes: :picknose:

Doc

Well-timed thread!
 

Whoa-boy, did this hit home for me today! My brother called me to ask how the SCS trial was going and I told him that I wasn't sure that it was really helping my pain much. Then he asks me, "Well, other than that, you're feeling pretty good?"

What?!?

Other than that, Mrs. Lincoln, how was the play?


GAAAAAAHHHHHHH!!!!!

I had a therrmo-nuclear meltdown right in the middle of the cube farm where I work. If my coworkers didn't think I was unstable before, they surely do now!

....... :ROTFLMAO:....... Oh my LORD, Joan, that is too funny!

Oh hon, I can't take credit for that one...but it sure did seem to fit in this case!

What‽___No Interrobang‽ ___ :picknose:

Doc

Hand those folks
 

My favorite
 

My current favorite: So glad you're pain free now that you have your SCS.

And I put this in another thread: well, why would you get the SCS if you aren't going to get out of the wheelchair? Or completely off the meds? Obviously said by people who haven't had a day in pain in their lives!!!

Oh Golly I forgot
 

I just heard again "So, how's your back?" Maybe I should have handed them a straw, or referred them to Doc Smith to inquire about next time I am in time for time travel, or...........

Oh, I know.... I no got no nose to know how it goes.

BUT wouldn't it be fun to market our own Pain Sufferers' Straws, the proceeds of which go to lots of sufferers' guffaw parties? We could market these big curly-Q plastic widgets imprinted with "Just Suck It Up!" so when a well meaning or demeaning comment is tossed our direction we can hand them a STRAW! Yeah. "How's your back?"

Oh, Please........... Doc, the Pain, the Pain........... have Scotty transport me outta here. [No wait a minute, the name of that particular space craft officer was politically incorrect as ethnically demeaning] Give 'em a straw. Suck it up yourself!

Yeah

How about this one...
 

"Yeah, my back hurts too. What's the big deal?"

Being a large male with graying hair and grey beard and grimacing face half the time, people don't say much to me. I think I'm lucky. I still want a "suck it up" straw.

Well Hey Paul
 

We really need to get some printed up, if only for ourselves.......

SUCK IT UP..... yeah.

Or here is a good one you don't want to hear in the OR...... "Oops!"

Yup,
Mark56:grouphug:

My significant Tormentor has this statement that just grates on my last nerve:

"Leave it alone long enough and it'll go away."

That could be another whole thread....
http://www.allowe.com/Humor/book/Thi...%20Surgery.htm

In fact, just go to Google and type in: things you don't want to hear
There are dozens of categories.... :p

Doc

As I mentioned early on, the real challenge/conundrum is paring the list down small enough (number of items) to fit on one side of a business card in 10pt type, and which talking points to include on the obverse side!

Any thoughts?

Doc

so - hows your back?
 

How is your back? This questions is asked by every person at church. I feel like wearing a sign on my forehead that says "my back is still there". I've begun to let the question askers know that my implant is a "tool" that helps my pain. I've been asked this question for over six years now! lol It's obviously chronic pain - otherwise I would not have decided to have a battery inplanted in my buttox and plastic leads up my spine. No biggie huh?
"so are your cured now" ? I wish I was cured!! If I was "cured", I wouldn't need a SCS.
!!"I thought you were out of pain now"? The pain is ore tolerable....Thank God!!
I think they are trying to be nice -- but I so wish to be rude, and tell them - when it changes, I'll let ya know!! :D

Akshully
 

Back of biz card in 20 pt type DocSmith- We should just use your "Oh the Pain, the Pain."
Yup

We could upload all the information on a 8gb 1/4" computer chip and shove it in the foreheads of those it would benefit. :cool:

Somewhere on the card -

No questions please, gentle hugs accepted!

Awwww
 

Now Seahorse!!!!! That is the BESTest Yet!!

You get the Gold Star!!
Rae, do you have a Gold Star in your left pocket?
Yup,
Mark56

Does my left pocket ever fail?
 

.................................................. ...http://dl8.glitter-graphics.net/pub/...ct4h6tvcvv.gif


..............................Way to go Seahorse!!

Aaaah Guys - Thanks for the much needed smile! :)

In case anyone hadn't figured it out, that's why I chose the handle (aside from "Doc" being my nickname since middle school).

Doc

Wow. To have so many people care enough to ask. That's a lot of blessings. And you want to be rude to them? :confused:

Doc