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

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. 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.


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! Most people will not walk away because they feel obligated to stay since they asked. It definitely stops them from asking again.

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!

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!

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.