Aa
how to respond to stupid and unhelpful comments
We've talked about this before, how sometimes when we disclose our illness, the response we get is to be informed of someone that person knows with MS, and how badly they are doing, ie: in a wheelchair, really going downhill, not well at all, bedridden, etc. I've gotten all of those. The best was when I was told about someone in a wheelchair, but boy, is she positive about the whole thing!! She has such a great attitude!!
I'm not sure how any of that is supposed to help.
My father-in-law was diagnosed with prostate cancer a few years ago. Did I immediately respond by telling him that my grandfather had it too and he was horribly ill and in pain for a long time and lost 60 lbs before he eventually died of it? Of course not!!
However, when my friend's mother was recently diagnosed with lung cancer, did I tell my friend, who was very upset, about my grandmother who had it over 20 years ago, had chemo and radiation, recovered and stayed in remission, and lived to a very old age? Of course I did!
Where is the common sense, if not the compassion?
So I'm seeking your advice on how to respond to someone the next time I am told a tragic tale of some poor MS'er ravaged by the disease. I want some real zingers. Of course, I'll take the high road and be polite, so this is not to say to their face, just inside my head to make me feel better. So be as sarcastic as possible.
I'm not sure how any of that is supposed to help.
My father-in-law was diagnosed with prostate cancer a few years ago. Did I immediately respond by telling him that my grandfather had it too and he was horribly ill and in pain for a long time and lost 60 lbs before he eventually died of it? Of course not!!
However, when my friend's mother was recently diagnosed with lung cancer, did I tell my friend, who was very upset, about my grandmother who had it over 20 years ago, had chemo and radiation, recovered and stayed in remission, and lived to a very old age? Of course I did!
Where is the common sense, if not the compassion?
So I'm seeking your advice on how to respond to someone the next time I am told a tragic tale of some poor MS'er ravaged by the disease. I want some real zingers. Of course, I'll take the high road and be polite, so this is not to say to their face, just inside my head to make me feel better. So be as sarcastic as possible.
Ha! You know really, we talk about "dumb" people all the time at work. The difference is that work deals with "dumb" stuff, like steaks and maragaritas....I can just imagine!!
It's true, folks, everyone is dumb but us. And whichever way you catagorize "us" it works. Whether it's the restaurant manager, the elderly, the overnight clerk at the gas station. Someone is always stupid in someone else's eyes. I guess that's part of what makes life interesting.
It's true, folks, everyone is dumb but us. And whichever way you catagorize "us" it works. Whether it's the restaurant manager, the elderly, the overnight clerk at the gas station. Someone is always stupid in someone else's eyes. I guess that's part of what makes life interesting.
"do i look like i`m stupid cuz your making me dumber with every word." is one i`d consider i general just put on a smile and say well i hope that doesn`t happen with me.
If these kinds of things are said by people that I really don't know or are not family, I just let it go. It's not worth getting all upset over. It's a waste of my time and energy; that is precious to me.
No one can see inside of your body and know what kind of disability or problems you have day in and day out with your body. They are not mind readers.
Sometimes, just to be acknowledged by someone, is better than them ignoring me all together.
Just a thought....
Heather
No one can see inside of your body and know what kind of disability or problems you have day in and day out with your body. They are not mind readers.
Sometimes, just to be acknowledged by someone, is better than them ignoring me all together.
Just a thought....
Heather
At the end of the day when I use my hiking staff 'cos I'm just too d@mn fatigued and unstable, people look at me like some affected eccentric.
Maybe I should start dressing like an affected eccentric as well.... Maybe a crystal ball on the head of the stick...some mystic decals on the shaft...Call their bluff!
Guitar_grrrl
Maybe I should start dressing like an affected eccentric as well.... Maybe a crystal ball on the head of the stick...some mystic decals on the shaft...Call their bluff!
Guitar_grrrl
I love the suggestions, some of them are too good to just say inside my own head.
I can't wait for the chance to tell someone rude that I'll ask for the fast kind of MS next time. Love that!
I actually do remember thinking "Did you really just say that to me?" to a co-worker, who happens to be a nurse, who told me about a young man who went downhill really soon after diagnosis and isn't mobile and can no longer feed himself. This she tells me immediately after I disclose my MS to her for the first time. And did I mention she is a NURSE?
Ren sent me some great ones:
MS has been good for me - no one told me how good I looked before MS!
I may not look sick but you don't look dumb.
My disabling chronic illness is more real than your imaginary medical expertise.
I esp love #3.
I can't wait for the chance to tell someone rude that I'll ask for the fast kind of MS next time. Love that!
I actually do remember thinking "Did you really just say that to me?" to a co-worker, who happens to be a nurse, who told me about a young man who went downhill really soon after diagnosis and isn't mobile and can no longer feed himself. This she tells me immediately after I disclose my MS to her for the first time. And did I mention she is a NURSE?
Ren sent me some great ones:
MS has been good for me - no one told me how good I looked before MS!
I may not look sick but you don't look dumb.
My disabling chronic illness is more real than your imaginary medical expertise.
I esp love #3.
The lack of concern by the store manger screams negligence. Separate from the ADA rights, the manager's acknowledgment and lack of an immediate remedy for a known hazard and identified hazard fits the breach of the duty of a what would be expected of a reasonably prudent person acting under similar circumstances. Add this definition of negligent tort to the correspondence to the company legal counsel and you will certainly get their attention and I am sure an immediate repair of the dangerous door.
Acknowledging the problem and then not repairing the problem is simply a stupid action and response to an acknowledged problem. I am not one to be litigious especially since I work in insurance defense but these actions or lack thereof are an textbook example of negligence. In the meantime I would certainly write the local paper so some small child or handicapped person does not get harmed by the inability to "modify the building".
OK off my soapbox.
I do like your one-liner of "I can't believe that you just said that to me." It is perfect.
Acknowledging the problem and then not repairing the problem is simply a stupid action and response to an acknowledged problem. I am not one to be litigious especially since I work in insurance defense but these actions or lack thereof are an textbook example of negligence. In the meantime I would certainly write the local paper so some small child or handicapped person does not get harmed by the inability to "modify the building".
OK off my soapbox.
I do like your one-liner of "I can't believe that you just said that to me." It is perfect.
"And just how did you expect me to feel after you told me that particular story?"
or
"I can't believe that you just said that to me." This one is my favorite as it is non-inflammatory and there is no follow up needed. You just look incredulous and move on.
After being told I was moving too slow in the checkout line, I turned to the man and said loudly, "Oh, my, next time I'll get MS I'll ask for the fast kind."
I had an older couple approaching my car while I was getting out of my car in a handicap spot. It distracted me, i caught my foot on the floor and fell out of the car. Apparently that told them all they needed to know, as they turned and walked away.
T-shirt - No. I'm not drunk, I have MS.
We have a brand new JC Pennys and the door to the restroom was so heavy that I lost my balance trying to push it open and get through it. I fell backward when I tried to get out, lost hold of the door and had to try again. I would estimate that the pull on the door was at least 20lbs. My athletic niece had trouble opening it also. ADA code is no more than 5lbs of force to open. I also suspect it is against fire code. I complained to the manager who said, " Yes, we're aware of the problem but we can't 'modify the building' without corporate authorization." !!!!!! Not even an apology. I know he was handing me a line and I told him so.
That ranks right up there with "The check's in the mail" and "Yes, I'll respect you in the morning."
I cannot imagine anyone in a wheelchair, on crutches or pushing a stroller being able to navigate this door with ease - or a child! It would slam closed on them midway. No corporation would prevent a store manager from repairing a dangerous door. There will be complaints now to the fire marshall, the mayor's office and the activists from spinal injury associations to corporate headquarters and to their legal counsel, and I am considering a letter to the local paper.
I'm thinking of buying a spring-scale from Home Depot next door and testing the force needed to get the door open.
Any other ideas?
Quix
or
"I can't believe that you just said that to me." This one is my favorite as it is non-inflammatory and there is no follow up needed. You just look incredulous and move on.
After being told I was moving too slow in the checkout line, I turned to the man and said loudly, "Oh, my, next time I'll get MS I'll ask for the fast kind."
I had an older couple approaching my car while I was getting out of my car in a handicap spot. It distracted me, i caught my foot on the floor and fell out of the car. Apparently that told them all they needed to know, as they turned and walked away.
T-shirt - No. I'm not drunk, I have MS.
We have a brand new JC Pennys and the door to the restroom was so heavy that I lost my balance trying to push it open and get through it. I fell backward when I tried to get out, lost hold of the door and had to try again. I would estimate that the pull on the door was at least 20lbs. My athletic niece had trouble opening it also. ADA code is no more than 5lbs of force to open. I also suspect it is against fire code. I complained to the manager who said, " Yes, we're aware of the problem but we can't 'modify the building' without corporate authorization." !!!!!! Not even an apology. I know he was handing me a line and I told him so.
That ranks right up there with "The check's in the mail" and "Yes, I'll respect you in the morning."
I cannot imagine anyone in a wheelchair, on crutches or pushing a stroller being able to navigate this door with ease - or a child! It would slam closed on them midway. No corporation would prevent a store manager from repairing a dangerous door. There will be complaints now to the fire marshall, the mayor's office and the activists from spinal injury associations to corporate headquarters and to their legal counsel, and I am considering a letter to the local paper.
I'm thinking of buying a spring-scale from Home Depot next door and testing the force needed to get the door open.
Any other ideas?
Quix
I parked in a handicapped space today, and had some woman a little older than me glaring at me. I considered having a T-shirt made up that said "I have MS; look it up". Hmm, "Google MS Fatigue"?
While waiting for my PCP appt., a nervous older woman struck up a conversation with me, how much she hated coming to the doctor because of all the sick and infirm people she had to be around while waiting, how her father had died of cancer and she just couldn't stand it, shuddering as she looked at a person with a walker.
I just smiled, and had the most amazing, lengthy conversation with her; I ended up feeling like her psychiatrist. I thought of how she would react if I told her that I have MS, degenerative joint disease, restless leg syndrome, and chronic pain, etc., that calls for several medications to give me some quality of life. About the huge needle once a week and the five smaller allergy needles another day of the week.
She thanked me for being so kind and helpful and calming, and asked me if I was there for a physical or to transport someone. I told her that actually I was there for a regular follow-up on multiple health issues, and she seemed very glad that she got called for her appointment about them.
People can be strange.
Kathy
While waiting for my PCP appt., a nervous older woman struck up a conversation with me, how much she hated coming to the doctor because of all the sick and infirm people she had to be around while waiting, how her father had died of cancer and she just couldn't stand it, shuddering as she looked at a person with a walker.
I just smiled, and had the most amazing, lengthy conversation with her; I ended up feeling like her psychiatrist. I thought of how she would react if I told her that I have MS, degenerative joint disease, restless leg syndrome, and chronic pain, etc., that calls for several medications to give me some quality of life. About the huge needle once a week and the five smaller allergy needles another day of the week.
She thanked me for being so kind and helpful and calming, and asked me if I was there for a physical or to transport someone. I told her that actually I was there for a regular follow-up on multiple health issues, and she seemed very glad that she got called for her appointment about them.
People can be strange.
Kathy
I have stopped worrying about rectifying ignorance, because really it's hard to get unless you're afflicted with a neurological disorder. I just tell them "MS is like Russian Roulette. You just never know what's going to happen next."
I think ignoring them is the best way...cause some just won't go away.
take it easy everyone
wobbly
dx
take it easy everyone
wobbly
dx
My favorite one is "Does that mean you are going to die?"
Why YES it does, but so are you and neither of us will die form MS.
Why YES it does, but so are you and neither of us will die form MS.
I take the intent not the words. I do not listen to what people say but why. If they mean to be kind I ignore the delivery.
I want to be judged by what comes from my heart not my mouth. I say some pretty stupid things with out meaning offense.
Alex
I want to be judged by what comes from my heart not my mouth. I say some pretty stupid things with out meaning offense.
Alex
Correction:
Light travels faster than the speed of sound...that's why some people appear bright until they open their mouth.
Light travels faster than the speed of sound...that's why some people appear bright until they open their mouth.
I have had to tell people it is progressive. You start out walking and you end up in a wheel chair. i know that is not true always but it helps others get it.
I don't know. It is a rotten situation. "You look good!" Do I really or are they just saying that to make me feel better? My eyes sure do not feel good. Doesn't the pure exhaustion she in my face? How can it not?
Do you see my limp? Some do and some don't. I liked summer because I could wear shorts and people would see my braces and not look at me like WHAT ARE YOU DOING PARKING THERE! or WHY ARE YOU IN THAT MOTORIZED CART?
There are always going to be curious uninformed people. One of the girls I had coming in to help me said, "well the other lady I have has MS and she is in a wheel chair" That girl did not come back because she lacked understanding of my situation.
My arms and legs are still attached. I can stand upright. My head is still here, not rolling away. But I still need help with my 5 children and their laundry.
Why was I not told when my husband and I were adopting our 5 children, 4 of them disabled, that I would end up like this?
Some days are so terribly difficult. I am sick today and feel awful. My sweet little 4 year old baby with Down syndrome is sitting right her beside me with the biggest smiles, that helps some.
No one really understands this unless they have the diagnosis. Taking injections every other day and feeling like I have the flu every other day stinks. The areas left from the injections hurt and leaves marks that do not go away for weeks. They start out red and then go to a bruise.
Oh and that pill I tried to take a few days ago that went the wrong way and I almost choked to death on. I was lucky that I was able to draw in 3 breath and pop it out. My husband came running out of the bathroom.
It was awful. I thought I was going to end up dead. I was supposed to be getting a swallow study done even before that happened.
I was afraid to take my pills for several days after that happen and was still tasting the left over of that pill for a couple of days coming up from my throat.
lets not even talk about my vision. It is so difficult to read or do anything on the computer some days.
I don't know....what can we really say to get anyone to understand? We "look so good!"
LA dx'd Feb 2008
I don't know. It is a rotten situation. "You look good!" Do I really or are they just saying that to make me feel better? My eyes sure do not feel good. Doesn't the pure exhaustion she in my face? How can it not?
Do you see my limp? Some do and some don't. I liked summer because I could wear shorts and people would see my braces and not look at me like WHAT ARE YOU DOING PARKING THERE! or WHY ARE YOU IN THAT MOTORIZED CART?
There are always going to be curious uninformed people. One of the girls I had coming in to help me said, "well the other lady I have has MS and she is in a wheel chair" That girl did not come back because she lacked understanding of my situation.
My arms and legs are still attached. I can stand upright. My head is still here, not rolling away. But I still need help with my 5 children and their laundry.
Why was I not told when my husband and I were adopting our 5 children, 4 of them disabled, that I would end up like this?
Some days are so terribly difficult. I am sick today and feel awful. My sweet little 4 year old baby with Down syndrome is sitting right her beside me with the biggest smiles, that helps some.
No one really understands this unless they have the diagnosis. Taking injections every other day and feeling like I have the flu every other day stinks. The areas left from the injections hurt and leaves marks that do not go away for weeks. They start out red and then go to a bruise.
Oh and that pill I tried to take a few days ago that went the wrong way and I almost choked to death on. I was lucky that I was able to draw in 3 breath and pop it out. My husband came running out of the bathroom.
It was awful. I thought I was going to end up dead. I was supposed to be getting a swallow study done even before that happened.
I was afraid to take my pills for several days after that happen and was still tasting the left over of that pill for a couple of days coming up from my throat.
lets not even talk about my vision. It is so difficult to read or do anything on the computer some days.
I don't know....what can we really say to get anyone to understand? We "look so good!"
LA dx'd Feb 2008
Light travels than the speed of sound, that is why some people look bright..until they open their mouth.
I'm busy now, can I ignore you some other time?
There is nothing more frightful than ignorance in action. - Goethe
There is nothing more frightful than ignorance in action. - Goethe
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