~Common misconceptions and careless words

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Mrs. Dani
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Date Joined Jun 2009
Total Posts : 2787
   Posted 11/7/2009 7:59 PM (GMT -7)   
 
      Good evening CP Family,
 
      Sometimes there are things I wish I never had to hear. Though I seldom say anything negative or try to give enlightment on common misconceptions... I find those simple phrases, misconceptions, and common sentences linger in my mind long after they are said. How about any of you? Have a sentence or phrase that stuck in your mind? Negative misunderstandings towards those with chronic illness? Here are a few Id like to write out, get off my chest and let go...
 
"Arnt you USED to pain by now?"
"Why cant you just hurry up?"
"Atleast you can still function."
"Atleast you have doctors that give a ****. Mine kicked me out."
"Why are you always so positive? Whats WRONG with YOU?"
"Can you just do the yard work and be indifferent about it?"
"You better be feeling better!"
"How can you WALK if your in so much pain?"
"Atleast you don't look like you sick, except for the weird thing with your hip."
"If you take pain medication obviously you cant be in pain."
"If you dont make your doctors give you a diagnosis you even more stupid than I thought."
"Everyone knows pain clinics are for junkies with insurance."
"Oh you take antidepressants, so your like, mentally sick or something?"
"You just need to stop taking all that medication and go to a homeopath."
"Why don't you just drink more milk?"
"Atleast you can see out of the other eye."
"Just jogg in the mornings and you will feel better."
"Obviously your doctors are keeping you sick to make money."
"Your a burdon on the system."
"Can't you just get over it?"
"Atleast your husband supports you. Maybe I should get sick and then my husband would love me too."
 
................................
 
There, that feels much better.  Now it is time to forgive and forget.
 
*huggs*
  dani
 
 
 

 

 

Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood

 

 


privey
Regular Member


Date Joined Oct 2009
Total Posts : 453
   Posted 11/7/2009 8:05 PM (GMT -7)   
Amen Dani......I agree....if you haven't lived it you just don't know it.

Cathy

Chutz
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Date Joined Jan 2005
Total Posts : 9090
   Posted 11/7/2009 8:16 PM (GMT -7)   
Oh Good Lord Dani!

As I read that list it just broke my heart to think that you have heard all of those words hurled at YOU! For the most part, I wouldn't with the pain I live with on anyone. But the people who say those things???? How about let them live with my pain or your pain for as long as it takes for them to apologize and cry 'enough already! I'm sorry. I was wrong!' Then we can call off the pain. See how long THEY like it.

I'm not sure why but I've never had anyone say things like that to me. Maybe they say them behind my back but even at work the few who knew were very sympathetic and kind. My family knows but rarely says anything and it's never unkind if they do. I'd rather have silence that such hurtful words slung at me. And as for the people who make these comments, it shows how ignorant, callous and selfish they really are. Let them go off in their egocentric little worlds. As for me, I'm hanging out with those who have more respect for me. We are no different than anyone else except..we live with pain and should, at minimum, be awarded a purple heart for what we endure.

Dani...I love you! And you are a 110% classy lady. End of story.
Chutz
The three grand essentials of happiness are: something to do, someone to love, and something to hope for. — Alexander Chalmers

(\o/)Co-Moderator Fibromyalgia & Chronic Pain Forums
(/|\)
Fibromyalgia, PTSD, UC, Diabetic on insulin, collapsed disk, arthritis scattered around and a few other delights.


Gretchen1
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Date Joined Jan 2007
Total Posts : 3459
   Posted 11/7/2009 8:35 PM (GMT -7)   
I have some..............
 
But you look so good.  Translation = your faking this
 
Are you sure you have MS?  Translation = I don't believe you are that sick
 
MS isn't real, you have undiagnosed Lyme. (that was actually said here........hehe)
 
Oh well, good thing there are meds for that now.  Translation = you will be fine, no worries, get over it
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10392
   Posted 11/7/2009 9:00 PM (GMT -7)   
I always like:

"I don't know how you live with it"

What should I do, just lie down and die? Not really much choice here...
Judy
Co-moderator, Ulcerative Colitis
 
Diagnosed in 2001, finally in remission since March 2006.
Mesalamine is not my friend and steroids are from the devil.
Remicade has been my miracle drug.


Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9622
   Posted 11/7/2009 9:52 PM (GMT -7)   
Dani...
Sure wish people would be nicer, eh...
but until that perfect world comes, I hope you don't have to deal with the jerks that
say these often...
Lots of soft hugz
(((((((((((((((((((((Dani)))))))))))))))))))))))))))))))
Maybe you could say "Did you really just say that.." back at them or "hey you
obviously need an edit button" might work...I wonder if these people know how
they sound????

skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 11/7/2009 11:04 PM (GMT -7)   
Oh, Dani! (((((((((((((((Dani)))))))))))))))))). I'm so to hear that those stupid people are getting to you! I think we can all relate. Some days I'm good at not letting them get to me, others I'm not. It's hard enough to live every day in pain, let alone have someone else berate and belittle us. I know that many if not most of these type of comments are meant as helpful or caring suggestions, etc, but sometimes I just wish people would think before they spoke! Honestly, if people thought less about themselves & more about others this world would be a better place! I wish I had some secret to dealing with these questions & comments. I'd gladly share it with you all!

Gotta love this one:
"You just have to try harder to get better."

Skeye

BigLucy
Regular Member


Date Joined Mar 2007
Total Posts : 413
   Posted 11/7/2009 11:42 PM (GMT -7)   
I truly believe that people need to think you--I--have had to have caused your illness somehow to ease their own fears; it's too frightening to admit that you can be healthy one day and boom, diagnosed with a major illness the next. Some coworkers and friends were always trying to figure out how this could have have happened to me when I was first diagnosed--genetics, "who in your family...?" lifestyle, "what has your diet been like...?" etc. Now, something that I just try to laugh at, is the few who still approach me with "cures," a friend of a friends Uncle has the same thing and they drank this tea made out of a root grown in Brazil............ I truly believe some people think I wouldn't be sick if I just tried "something" or that I haven't really explored all my options--yeah, I'm just holding out. You know what it was for me, what I've got out of staying sick, the disabled placard, that was the was the selling point for me--parking got to be such a drag, I'm on easy street now.

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 11/7/2009 11:50 PM (GMT -7)   
Oh, and aren't we forgetting the New Age hype? Things like -

You must have some lessons to learn, and then your pain will go away.

Or - you must be "attracting" all of this to you.

But mostly I just hear the "gee, you look good." (translation: so nothing really serious must be wrong.)

PaLady

cat8201
Regular Member


Date Joined Nov 2009
Total Posts : 135
   Posted 11/8/2009 6:38 AM (GMT -7)   
I struggle with this in my marriage. My husband says to me all the time "anyone who just lay around all day is going to think something is wrong & end up on disability". Or my favorite from him "you like it this way, you get your drugs, and you stay home all day, you don't have a care in the world, like a little butterfly, and you want to be this way"---that one earned the response--in a calm tone "if you are that ignorant & selfish about my situation then I would rather not speak with you for the remainder of the day"

My fav is o my bday this year my sil wrote me a long letter telling me I was a horrible wife & mother & she started ramling on about the stuff she survived like cancer (they found it it was gone, that's happened to me too but nothing compared to now), a hysterectomy- I had a major complication w/ a 1 in 10 chance of survival that affected me for months and the hysterectomy was following a failed pregnancy & svere trauma to the body. It was 8 months of hell & I didn't even no what was going on. Then in closing the letter-she finished with old testament bible vs. I wold never do that 2 some1. She didn't even no what was goingon, she hadn't called, or anything. It just came from no where.

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3459
   Posted 11/8/2009 7:50 AM (GMT -7)   
OH PAlady!!!!!
 
You must have had someone read that book "secret".  You send out signals to the universe and they are reflected back to you.  Doesn't that just make perfect sense to you?  That is why babies get sick and die........they somehow asked for it.
 
Oh grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr!!!!!!!!
 
After this most recent flare I have had (losing the sight in my left eye....it is coming back), my mother asked me what I did wrong.  "Did you eat badly? or not exercise?  What did you change to bring this on?"
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


edt
Veteran Member


Date Joined Dec 2008
Total Posts : 773
   Posted 11/8/2009 8:28 AM (GMT -7)   

OMG.....yes yes yes....I've heard all of these and more!  My husband has a Blues Rocknroll band and they were invited to a really big venue, they played from 11PM-2AM.  I went, it took everything I had to sit and stand and pretend like I was normal!  One of the other band members wife was dancing and jumping around and said why aren't you dancing?  She knows my situation!! She then turned and said my goodness but you are a PARTY POOPER!  I was crushed beyond words!  I keep hearing those words over and over again when I am able to go to any other gigs!

My reply to her was "I'm having too much fun just watching you"!  Almost choked on those words!  What I pictured was me whacking her on the head and asking her WHAT ARE YOU THINKING?????????

XXOO

Patti

 


Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 11/8/2009 9:05 AM (GMT -7)   
 
 
      You guys said it! What are they THINKING when they say these things? What I have run into alot is the "comparison" conversations. I dont wanna compare myself with your sisters aunts, uncles cousin once removed. And socially, always!! Never fails!! "Well I have XXXXX and Y AND Z. So you should be greatful." ......  smhair    Obviously there needs to be a "time out corner" for adults.
 
*huggs*
    dani

 

 

Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood

 

 


bluejet2
Regular Member


Date Joined Feb 2009
Total Posts : 487
   Posted 11/8/2009 10:51 AM (GMT -7)   
I can completely relate, I can add a few:

Just loose some weight and your back won't hurt anymore!

You've had how many surgeries? Why don't you just give up already.

You just like having surgery and being in the hospital - to you it's like a vacation and you just want to get waited on hand & foot.

Remember, there is always someone worse off than you!

How can you be on that much medication and still feel pain?

Everytime I'm in the hospital, several nurses say "I've never given this amount of narcotics to one person in my entire career"

I hope you are feeling a little better Dani!

Lorie

Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 11/8/2009 5:32 PM (GMT -7)   
devil   devil    Universal Remote w/  "Mute ALL"  button! devil devil

 

 

Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood

 

 


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 11/8/2009 5:51 PM (GMT -7)   
Great idea, Dani!!! yeah yeah yeah

Praying's response reminded me of another. It was one of my first trips to the drug store to get my own prescriptions after my lumbar fusion, and I was walking with a cane. At the cash register ran into an old high school acquaintence who proceeded to point to the cane and ask what are you doing with that? We're too young for that! And I said I just had back surgery, and he kept on with how "we" don't need such things, and went to give me a pat on the back!!!! Fortunately I moved fast enough, but it made me afraid to be around anyone until I had healed a bit more. I actually think this was my first "solo" trip out of the house - and it was nearly 2 months after surgery, but I still had a long way to go.

PaLady shakehead

Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2284
   Posted 11/8/2009 6:57 PM (GMT -7)   
"If you weren't so skinny you probably would have less pain."

"You should take vitamins." (that one's my favorite b/c the person who said it to me missed way more work than I did due to illnesses -- obviously the vitamins weren't doing the trick)

"You just need to be more disciplined & keep to a schedule." (i.e., if you didn't ever miss work, the pain would resolve itself -- nevermind that the pain's WHY I sometimes miss work)

"You're only in pain because you think you're in pain. You can WILL the pain away if you wanted to."

"You must be getting something out of the pain, or you wouldn't have any." [apparently she picked that one up from Dr. Phil]


If we're taking votes, I'm also in favor of censoring people who say stupid things. :) scool

golitho
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Date Joined Sep 2008
Total Posts : 1670
   Posted 11/8/2009 8:42 PM (GMT -7)   
Dani, it made me laugh, only because I've been there too. I don't think they do think when they speak, just speak out on automatic pilot or something!!!
But I manage to cope with all except the new agers, somehow we need this pain to teach us some moral lesson, we wished it on ourselves!!! I mean come on...what about little babies born with horrendous conditions??? They get me furious, I always hope they come down with the worst conditions imaginable. So uncharitable of me I know.
My students come out with some humdingers too. One of my best students who I'd bent over backwards to help her with her work, said to me OH you were a bit out of it last week, I'd been in bad pain and gone the extra yard for her and this is what she thought of me! I just said thanks, N, I won't bother to help next time.
Its so thoughtless and hurtful, oh the joys...golitho

BigLucy
Regular Member


Date Joined Mar 2007
Total Posts : 413
   Posted 11/8/2009 9:40 PM (GMT -7)   
Something to add to the mix: live your life to it's fullest, every day you should be out there living, everybody was put on this planet for a reason-you have to discover what your purpose is. Oh, and all the ways you should look, looking your best every day is just as important as what you do. Had surgery two months ago, watching a lot of TV and it's just full of things I should be doing with my life right now to be completely fulfilled as a human being. If I wasn't occupied with things like, oh, I don't know, not feeling well most of the time, this stuff would be a lot to worry about.

Pete trips again!
Veteran Member


Date Joined Nov 2006
Total Posts : 1899
   Posted 11/9/2009 7:45 AM (GMT -7)   
I love you too Dani!!!~!!
I only wish I could be there w/ you when these jerks say things like that to you! I'm big enough that I can intimidate people just staring at them! And I would be shooting knives from my eyes if I heard them talking to my "Lil Sis" like that!!!!!!!!!
I just love the one> "You really should go see my Chiropractor, he could fix you right up!"
Then if they really get my goat, I'll get in a big pissing contest w/ them and start playing "top this" I'll start with listing all my broken bones then go to hospital stays then surgeries and end up w/ my two cancers> that usually shuts them up! I hate it when I lower myself to their level but sometimes I just can't help it! People can be SO STUPID!!!!!
Love You Gize!!!
Pete

Screaming Eagle
Forum Moderator


Date Joined Sep 2009
Total Posts : 5005
   Posted 11/9/2009 8:30 AM (GMT -7)   
   Good Morning Dani! I was thinking that it would help if familys of patients that have CP, could go through some sort of counceling, maybe a video that explains it to them, might help them understand. I see that here on Healing Well, they have a video section, but nothing offered on CP. It's just a thought. Have a wonderful day! :)

Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 11/9/2009 9:21 AM (GMT -7)   
 
   !!Pete!! Your commin with me to the next PTA meeting! hehe
 
    Michael, When, you get back to a pain management specialist, ask for a referral to a pain psychologist. They work not just with you, but your immediate family members as well. :-)  
 
    It never fails to amaze me, the amount of social insensativity we all face each and ever day. I dont know if the "universal lesson theory" is just new age either. Last christmas I was told "He knows His plann for you. It is a lesson you have to learn.". I was really ashamed of my reaction to that one because my face became very red, I began shaking, and my heart was beating out of my chest! I had to excuse myself to go calm down. It took nearly 20mins. Sheesh! When she tried to press the point after I came back, I just said "It is beautiful you have lived a life that is priveladged enough to have such view points about your fellow man."
 
   *huggs*
      dani

 

 

Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood

 

 


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 11/9/2009 9:31 AM (GMT -7)   
I think these are great examples on how sometimes people fail on how to appropriately acknowledge one's suffering, or really bumble it up.
Sometimes one also wonders about compassion/caregiver fatigue of those who are closest to us.
I have to admit "The Secret" cracks me up.
My favorite is well it is not like you have cancer.  Bearing in mind I was literally bleeding out at the time.

And let's face it sometimes people (and I have been one myself) are just slow on the uptake.


Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…

Post Edited (MMMNAVY) : 11/9/2009 12:37:32 PM (GMT-7)


BionicWoman
Regular Member


Date Joined Jul 2008
Total Posts : 243
   Posted 11/9/2009 6:11 PM (GMT -7)   
I want to throw a brick through my TV screen every time I see a certain advocacy group's Fibromyalgia commercial, where they show one lady all tearful saying "Sometimes I just need a hug" and then go to the next equally tearful lady saying "but I know it's going to hurt."

So that's why most of the people I know who are living with fibro and chronic pain are shedding tears... glad they cleared that up! rolleyes
The difference between perseverance and obstinacy is that one comes from a strong will, and the other from a strong won't. ~Henry Ward Beecher


Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 11/9/2009 6:37 PM (GMT -7)   
 
   Oh! And my husband wonders why I am always on the forum! I love you guys!
**Group Hugg**
 
  *huggs*
     dani
       :-)

 

 

Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood

 

 

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