PS: I do not have Hodgkins Lymphoma... Only MS, COPD, Osteo... ahhh.. I forgot .... ;o)

I had this very same comment the other day while I was sitting outside the hospital between doctors appointments. I just smiled and said, "thanks!" But then she told me that I actually don't look like there is anything wrong with me, and went into a long list of what was wrong with the person she was waiting for and how bad she looked now that she was ill, and she finished by saying that I was lucky, because even though I might have more long term problems, at least I still looked good. I just told her that I would trade a few bad days or weeks for something that will be over soon and got up and walked away.

People mean well and they really think they are saying something nice to us. They just don't know that they are being stupid! We should feel dorry for them! The uneducated!

MY ADOPTED REPLY HAS ALWAYS BEEN THE FOLLOWING, "YOU DON'T LOOK LIKE AN ASSHOLE."
SIMPLE, TO THE POINT...SURE, ITS A BIT CRASS...BUT, OH WELL...I MAKE NO APOLOGIES...XO, EM

AT ONE TIME THE WORD "HATE" WAS NOT PERMITTED IN MY VOCABULARY, BUT I HATE WHEN PEOPLE SAY, "YOU DONT LOOK LIKE YOU HAVE MS." I HAVE EVEN GROWN TIRED OF REPLYING TO PEOPLE "YOU DONT LOOK IGNORANT AND STUPID!" OR "YOU DONT LOOK CLINICALLY RETARDED!" OR SIMPLY "WHAT DOES A PERSON WITH MS LOOK LIKE DARWIN?"...

It's a shame that the only place I can find people who understand what I am going thru is on the net. MS is a very lonely disease :-(

I pray I never "look" like I have this. But it does irrate me, my "general" md told me that the other day... and I told her the same thing.

I had to go to the bank, I didn't use my cane because I hate it! As I stepped inside I strarted having trouble with my balance, so when I saw everyone looking at me I just used my favorite phrase, " I'me not drunk", and no I didn't hurt my leg! I don't think anyone would know I have MS unless I tell them or wear a sign, and then most don't even know what it is.

I get this from time to time and in return say, "you obviously know nothing about MS either!" I, once upon a time, tried to educate.........but I find now I am less inclined and more irritated than anything...............I try to see that the person usually means well.................but is just ignorant regarding this malady. I did say I try!!!

Orsova,

Your comment of what some lady said "you don't look as though you have MS", is what people have said towards Sarcoidosis patients such as myself. For those who don't know or remember me, I've over on this "hotel" I mean "board" here and there. Yes about appearance that could be another symptom or trait of what M.S. and Sarcoidosis patients share medically.
Your and everyone's response could just be, "this M.S. medical stuff is happening internally in my brain, nerves, muscles," etc.
Unless you have perpherial neuropathy where your nerves are vibrating, twitching, or your head is doing this, they don't know about what is going on. I sometimes sit on the floor with my pant leg pulled towards my knee and I see my nerves or muscles virbrating, twitching. I seen this on both my legs simueltaniously. Polyneuropathy that what it is.

Orsova, is that cat and duck in that picture above your name or "username" are friends or buddies?????

gary

People have images in their head of Richard Pryor, Annette Funicello and others they may know personnally who have it much worse than we do. I don't think they say it to be mean at all. Actually, I just reply to them "I know, I'm one of the lucky ones and I thank God every day". I just leave it at that. They sure don't want to hear my every symptom that I deal with every day even though I may look fine. I just smile and say "Praise God".

@ DarkMoonButterfly

I like your approach ~ what an opportune time to bring someone up to speed about levels of MS & how devastating it is for so many ~ & maybe to encourage them to learn more & donate to to the MS Society for research while at it?

I don't know that a verbal beat-down accomplishes anything ...

I have not had this happen yet but I was just envisioning saying something like; "Oh good, I guess my $2300 a month medication is working!".

I can't tell you how many times I have heard this....on days when I feel good and on days when I feel horrible. I would so love to have a comeback that helps them to understand, but I like the one about my $2300.00 injections. Not to mention the Adderall and Provigil that I have to have to get through everyday for the fatigue. Or I may have just spent a day or two in bed recovering from some long days at work, and they see me when I do look "good".