how do you deal with ignorant people?
 

I was recently visiting family and saw a cousin I have not seen in a couple of years. She heard through the family grapevine that I got diagnosed with MS almost 2 years ago. The first thing she says to me is "so how sick are you?" and "how come you are not disabled?" "You actually look like nothing is wrong." Somehow the fact that she used the word disabled in such a negative way and proceeded to dig for personal medical info really upset me. I had no idea what to say, really. I suppose I could have given her a lesson on what MS is or tell her to butt out however I just stood there feeling stunned. I think it kind of freaked me out too since I don't really think of myself as disabled -- but will I be disabled in the future??

Well, I guess there is a first time for everything....my first MS-related encounter with a rude ignorant person.

Yes, this can happen alot, especially with family you don't see often. It has with me, anyway. My philosophy has been that if the person is someone I care about and who cares about me, I'll take the time to educate them. Some people though are just too ignorant, or they have preconceived notions about MS that they can't get rid of. For rude strangers, I try to come up with something pithy that they won't forget. :wink:

that is so hard to deal with. I normally make comments such as "gee, I am busy right now, visiting, and catching up, if you REALLY want to know, let me have your email address, and we can catch up through email, or phone calls, or letters, or whatever method you pick at that moment." you will find that most folks dont really want to know, but just want to be nosey for that minute. A few will surprise you and truly be interested in how you are.

Till then, I am the master at the put off. Gee! thats awesome, but I am headed for that yummy cheese dip! can we catch up later?"

When most folks say "its good to see you." I say "its good to be seen!" or a "im good, day by day, hanging in there or small comments like that." most folks just dont know what to say.

It sure is frustrating, Nat. I try to keep a handful of NMSS brochures with me when I'm meeting up with folk in that kind of situation. It's my peaceful way of saying, "We all use the same internet, do your own &^%$ homework and let me enjoy myself."

If I'm in the mood to, I might say, "Well, it all started on a cold November morn, it was 1962, a winter chill was in the air, and my mom felt those familiar pangs that warned her of the impending birth of her 4th child, me. I was a good baby, I'm told.................................. by the time I was 3, they say that..................................... I remember when I was 4, I met my oldest friend. They were building 7 houses down the road and............................................... By the time we started kindergarten......................." If they're still there, I keep going.

As for those remarks about how you look, Ted Bundy never looked like a serial killer, either.

I would have smacked her and then said sorry I have no control over that arm. :D

I've had the old "but you don't look like there's anything wrong with you!" as if it's a shock that you can look like anything other than a person on a deathbed...

I just reply "I KNOW! Neither do you! Aren't we lucky?" and smile and excuse myself!

(it always shuts them up while they think about what I just said and it gives me time to escape to the other side of the room!)

I kind of like the "gosh, you dont look like a complete dumb %&&, I can usually tell, but then I've got optic neuritis this week". (a friend told me that one...altho the rude moron might not understand the optic neuritis reference)

It's totally frustrating.....especially coming from people who see you every day. I can almost tolerate it from those who don't see me very often......but like Cindy said we all use the same Internet....take an interest if you're so concerned and look up some stuff for yourself. I'm not here to explain everything to everybody. I'm almost to the point of having some cards made up with www.nmss.com printed on one side and "Look It Up" printed on the other in bright orange ink. Whenever someone makes a remark to me I'll just hand them a card!! :p

Awww...I knew you guys would make me feel better!! :D

I never do this but


:highfive:



Dh really got me ticked last night, via phone. I was stressing about all the stuff I have to do to get the house ready to sell, while he sits in Florida with his dream job and room service.

:rolleyes:

He was kinda blowing off what I was saying, like it'll all be fine....I just need to take it easy, rest.

I hate it when people say to rest when that's the LAST thing I have time to do. I'm not sleeping, my leg is burning, my neck won't turn and I have 10 rooms to pack and paint and I have time to rest?

:eek:

Imma tell him WHAT.

I turned off my phone and Imma go buy me sompin purdy. Let my credit card bill do the talkin for me.

I have nothing constructive to add, but I'd like to second Shelley's idea..:D

I think I would have said:

"I am doing pretty well - there are good days and bad days". Then something along the lines of "not everyone with MS is outwardly disabled and the strangest part of this disease is that so many of the symptoms we deal with are invisible to outsiders. I am happy that my disease is not obvious to you."

Then, close with something like "I really don't like discussing this too much, but if you are really interested in knowing more about MS, the NMSS website has some great info."

That would be if I was behaving myself.:p If I was really being pissy, I might do what Shelley suggested!

My priest said he had an eye opening experience when he told a parishioner who has an autoimmune disease that he "looked so good" and the guy shot back "well, I wish I felt as good as I look then". He said that made him more sensitive to those of us who have invisible disabilities.

I'm sorry, Natalie :(. You have some good comebacks now, at least :).

I had a nasty experience with former coworkers (I'm on LTD now). When I was still working, everyone knew I had ms but my symptoms weren't very obvious. One day I had severe flare up. I couldn't walk and my cognitive abilities were shot. I had to go on short term disability.

About 3 weeks later (after a course of IVSM) the guys at work offered to pick me up and bring me to our work Christmas party. I was using a walker at that point so I thought "why not!". I really missed work. Big mistake. The only 3 women that I had worked closely with wouldn't even acknowledge me! They literally stared right through me :(. I was completely confused.

I eventually found out that they were mad at me for leaving them short handed! They didn't believe that I could possibly have gotten that ill "overnight" :(. I was very hurt by this, naturally. I never saw them again but one of my male coworkers set them straight. His wife has ms too and she's one of my closest friends :).

I still wish I had the chance to tell them off myself. Sigh...

Some people just do not want to know and don't want to believe how an illness can just devastate your life. That's their problem not ours.

I find that "Enough about me, how's your herpes?" seems to end conversations with rude people quickly.

Evil, I know. But it gives me a chuckle.:winky:


P.S. Just a joke. I haven't had to use it....yet.

in 96 I had a spinal fx and was in a wheel chair for a bit, and people will NOT look at you! When my son would push me, they would talk to him, when my DD would go to dinner with me, they would ask her what I wanted to eat. it was like if your legs dont work, you become retarded. Folks just dont know what to say. Of course, I am rude, and would say "HELLO! I am down here! yes, follow the sound of my voice! thank you! I will have the special please." good lord!

People really are stupid, and clueless when it comes to things that either scare them, or they dont understand.

Who was the girl from here that had a lunch table next to her say they would rather kill themselves than have MS? What dopes! even when confronted she refused to apologize. What a beeeotch. Her, I would have spit on.

If Jim's feeling humorous, he'll go into each and every symptom he has or ever had since 1988. He will go on and on until even I am flustered! :D Most people will not walk away because they feel obligated to stay since they asked. It definitely stops them from asking again. :p

He does this to telemarketers too. He once testified to a telemarketer for over an hour and had the whole office on speaker phone listening. That was pretty cool to watch. They never did call back. ;)

Dej,

I get that too, but with me, they are always staring at or talking to my chest! :p

I've actually reached out, put a finger under the person's chin and lifted their head up and said "my mouth and eyes are up here" very quietly.

It's all I can do to hold my laughter at the color they turn, the sputtering noise they make and the way they hightail it out of my sight! :D

When I have been out with a family member or friend who is disabled and I am asked what they want to eat I always say nicely "I don't know, why don't you ask him/her?" or, if they are unable to respond, we have discussed it beforehand and then I answer for them.

I think in a lot of cases people just are afraid to make a mistake or embarrass the person, and they take the easy way out rather than asking someone who may not be able to answer for themselves.

When my parents and I were returning from a trip to England in 2001, there was a woman in the airport, traveling alone, who had an obvious vision problem. I decided to help the woman at least get her lunch (our layover was like 4 or 5hrs long) so I guided the woman into the airport restaurant of her choice, and helped her read the menu.

When she got up to take the order, the kid just looked at me. Didnt say anything to either of us, just stared at me like they were waiting for me to say something. Finally he asked, "what's she want?" (just like that...) I told him to ask her. He said, "dont you have to sign to her?", and I quietly pointed out that she wasnt deaf, she has a vision problem. "You can speak to her.", so he yelled really loudly "WHAT. DO. YOU. WANT?!?".

The lady replied "Your manager". She gave the manager an earful and the kid got a talking to. The lady got her lunch for free. (she could see some, but I think she said she had macular degeneration and could only see peripherally. I think)

I ended up helping her to her gate (which wasnt too far from the gate where my parents and I had to be) and told the airport people at that gate that she had a vision problem and would probably need help. Sat and talked with her a bit and then had to leave for my flight. I hope she got where she was going, and I hope the kid that yelled "what do you want" at her finally got a clue.

My mom and her knees got treated badly like that the last time she used a wheelchair to get into a restaurant. People's brains seem to quit working when they see a person in a wheelchair or otherwise handicapped.

The only time I had run into MS in my life, was when a friend of mine's uncle developed it in his early 30's. He was on his way out to his car one morning, to get to his job (that supported his 5 kids & wife), and he fell at the curb. He never stood again, and died within about 10 yrs.

That was my experience with MS, and I thought that's how it happened to everyone.

Needless to say, I was a little disturbed when I became paralyzed during my first MS attack, and they told me what they thought it was ...

Many people ARE naive' to what MS is, and they might have only one "vision" of what it looks like. It sounds to me like your cousin was that way, and fully expected to see you in very dire straights. To me, it sounds like she was pleasantly surprised that you "looked so good".

Yeah, her comments showed ignorance, but I don't think there was any malice intended.

Cherie

My only experience with MS before I got diagnosed, other than hearing about a cousin who has it, was when I saw my former boss at a store here in town. She was working there. It was her last day at work before she went on disability. She'd just been diagnosed with MS, and was in the middle of an exacerbation.


Apparently she had optic neuritis in one eye, and she told me her legs and feet were numb. She looked really depressed. I'd never really known what the symptoms of MS were before that, other than seeing famous people like Teri Garr and Richard Pryor on tv.

I know I was having symptoms of MS at that time, but nothing obvious had leaped out at me yet at the time. I was waking up with blurry vision that took hours or most of a day to clear up, and I'd have tingly fingertips or numb fingers that wouldnt wake up for most of the day.


Both my former boss and I had mononucleosis around the same time. (girl at work kept coming into work while she was sick with mono...and she had a bad habit of having us taste the pop from the pop machines to make sure she hooked it up correctly with the same cup she'd just used to taste it)

I think the mononucleosis is what triggered the MS for both of us. I know of one other person, a guy, from that job who I heard also developed MS. Makes me wonder about how MS starts in people. I havent seen that guy since I worked there, I'd like to see him and my former boss again and compare notes on things. Makes me worry that we're part of an MS cluster group or something.

I know where my former boss lives, (nearby me) and I used to see her out in the grocery stores, but that was before I knew she had MS. I havent seen her in at least 5 or 6 years. I keep hoping that I'll see her out somewhere so that I'll be able to talk to her and tell her about my MS. I just hope that she's recovered from the symptoms that she'd been having and that she's not having any big problems from it. Maybe I'll go back to the store that she was working at the last time I saw her and see if she's there.

Natalie,
 

I have definitely become less patient with this type of thing. But long before I was actually dx, I didn't feel well and it took energy to just talk and have a normal conversation, much less a stupid one! So I've been known more often than not, to say absolutely nothing and walk off. Or say nothing and just stare at them until they walk off.

This may sound not so nice... and I really am a fairly nice person. But it's just about SURVIVAL! :(

I just can't take on all the stupid people in the world! :rolleyes:

ANYWAY, natalie, it sounds like this person was just being rude and nosy, which is a whole different thing than just stupid!!!!!

The church in town is having their semi annual church tag sale, and I am helping the old ladies run it, so that means I will be peppered with such nonsense most of the day. My standard comment to "but you look so good!" is "well, its good to be seen, excuse me, I see someone I have been hunting for, can I catch up with you later?" and then I skip off.

If you cant dazzle them with your brilliance, then baffle them with your BS. HA! :D

Here's my best advice...

Whether it's MS or anything else you don't want to address...when someone asks me a question I don't want to answer, I do just that - I don't answer. They usually ask a second time, at which point I may look directly at them for a couple of seconds, then go back to what I was doing. If they haven't gotten the message at that point, they will after the third time. :)

The point is this: why become uncomfortable? Let them become uncomfortable, if that's what it takes. Whatever, just maintain control of how you want to feel. If you start trying to come up with a response to a question that you'd prefer to not answer, then you are giving control of your mental state to someone else. Never allow that to happen.

It doesn't have to be confrontational; in fact, it can even be amusing. Now, occasionally someone will take offense at your measured silence. Just keep your control and only respond if you feel like it. My final comment, all other things failing, would simply be, "I don't want to discuss it."

You're not on the witness stand - you don't have to engage anyone if you don't want to. Your mind is your own, private space.

.

Good one. :D

.

I like your approach. Why do we always feel the need to try and not make other people uncomfortable....even if their actions are making us uncomfortable? :confused:

If I don't feel like an ignorant person, I normally will just tell Cindy I can't talk now and will call her later when I can.









I know that'll hurt later

i know how your mind can go blank in the moment.
sometimes i use a comment for a teachable moment but it depends on the circumstances.

after a while you get more immune to stupidity.

EXACTLY!!! :cool:

I agree.

Some people ask things with the best of intentions, and - speaking only for myself - I would probably try to respond kindly to a heartfelt question, rather than ignoring it or becoming aggressive. But I would certainly stonewall a question or comment from a stupid person - I just wouldn't let myself become upset in the process.

.

I know the feeling
 

I was told i had MS last year and after all of my friends and family got use to it i got preg. Every time i talk to one of them they ask me how i am going to raise the baby with MS. I just tell them that i will do the best that i can on my own. Then if/when something happens that will make it impossible to care for my child then and only then will i ask for help. Some say they want to help me do this and that but i just feel like telling them that i dont want there help i dont need it.