I need a better response to give these folks. 90% of the time I use the standard "well, I am seeing a great team of specialists, and right now, we are happy with the way things are going with the meds i am currently on." 90% of the time this fails to impress folks and they want to interject what their new idea is.

Whats a solid come back line? Mine arent working anymore!

My dh has been *stranded* in Sanford since May with his job. He doesn't know anyone there, doesn't know when he's gonna get back home, when a job up here is gonna open up for him.

"You don't get it, don't say you get it!" he snapped at me. I let him have it, for all the times I would try to explain what this is like and he would cut me off and say, "I know, I know...."



I told him this IS like being in exile too. No matter how many people are here, right in the room with you, you're really alone in it. Who can you talk to? Who understands the pain? Believes the invisible sx? Not one soul.

You don't know from lonely till you're sick.

The difference is, he may not know when but he does know his sentence will end. He needs to learn what the lesson is, how to live it without so much self pity, how to be alone, and how to deal with himeself so he can deal with everyone else. He needs to get something out of this.

He's been gone 10 months, I've been gone 10 years.

Are these the same people that don't bother to thank you for gifts that you hunted so methodically for at Christmas?

Why do you worry about what they say or think about you and your disease? You are a hard working and bright person who owes no one an explanation.

Maybe you get grilled because of their jealousy of your other life, the one outside of MS, where you have a nice place to live and plenty of $$$ due to careful planning and a solid work ethic.

gmi

DEJ: Everything you are saying, I can't add anything else.

It seems people all over that do not have this disease or another
disease just don't understand.
I don't think there is anything specific that can be said to make
them understand.

I remember one incident that especially stays with me. This goes
back many years ago.

I was at our local American Veterans Club with DH after the
local parade for Memorial Day. I didn't march in the parade, body wouldn't
let me and it also was a very warm day that year.

While sitting at a table with some friends talking about the parade
and how well the marching went, a women I only have seen at the club
when something was going on, asked me why I didn't march in the parade
since I was a member and active in the organization. I told her I couldn't
because of a problem. She persist, I finally told her, I had MS and at this
time the body was in no condition to do any marching.

She looked at me and said "You look so good and healthy"
(my temper was slowly starting to boil) "You don't look sick"
I looked at her and said, "MS doesn't put on a glamour show, it
hides inside and takes over your body and life.

She still was a little bit of a pest, finally I said

"What if you take me now, just the way I look at this moment, put
me in a wheelchair, would you have said, "you look so good, you can't
be sick"?

That put a sock in her mouth!!!!! Never saw her again at the club.

Jappy

Jerk says: “…but you look so well.”
Reply: “But you look like hell. What have you got?”

Jerk says: “But you look so well.”
Reply: “Yeah well, appearances can be deceiving. You look like a kind, sensitive person.”

Sigh. Try as we might, I don’t think we’ll ever come up with a pithy one liner that will forever cram shut the big mouths of the insensitive. I suspect it’s because there is nothing that can be said that will make people mature enough to face what animates a lot of their ignorance and callousness: the fear of their own potential infirmity and their ultimate mortality.

Think about it. Here are folks like us, walking (or not) around reminding all the “norms” that unpleasant things might happen to them. Their denial of our ill health (you look so well) and/or their urge to fix us with quake “cures,” really has nothing to do with us - but it speaks volumes about their own fears. MS and accident victims like me are especially troubling because we didn’t “do” anything that made us ill. We are just hostages of uncontrollable, indiscriminate, terrifying fate. After my accident a friend asked me if I ever thought, “Why me?” I told her no, that I thought, “Why not me?” The woman never called me again.

That brings us to the topic of our incredible, vanishing friends. One thing I’ll say, is that this experience has really separated the wheat from the chafe – and sometimes I’ve been shocked by which friend ended up in which pile.

There was one friend in particular. Before my accident, I’d driven her back and forth to the hospital and held her hand through all her cancer treatments when her “adult” sons couldn’t handle it. Shortly after I got hurt, she told me she didn’t see much point in our socializing because my brain damage meant we couldn’t really talk like we used to. (I still didn’t have the heart to tell her what the chemo had done to her own intellectual powers.) She was an aspiring novelist. What she was really saying was, “You’re no longer useful to me because your accident has pushed you out of writing.”

When you think about it, I bet you’ll realize that some of your “friends” have dropped you because you are no longer useful to them. When I read the MS forum, what I see are a lot of caring, together people. Before you fell ill, I bet you were the folks who organized activities, who people turned to for advice and who were the first ones at the door with a casserole and a strong shoulder when someone was in trouble. Now that you might need a little assistance and understanding, all the folks you helped all those years aren’t there – because they were takers. What I’ve come to realize was that some of my friendships were one-way. Frankly, I’m glad those pretenders are gone. My social circle may be smaller, but the folks in it are the real deal. A genuine friend is worth a hundred of the “so-called” variety.

Cheers

I had several friends simply drop off the radar pretty quickly. Those were the ones that counted on me to hold their hands, and mop their brow, thru the hardest of days. Those tended to be the fragile ones. The easily depressed crowd. The "why me" folks. Some even took my MS personally! "why does everyone I love get sick?!" eeek!

there were other friends who backed off in order to give me room to do what I needed to do. These are the same things folks do when you have cancer. They just go live their lives, and hope that some day you can be back in their circle. They dont see that I can still be there, just not the same person.

At least those two groups are honest. they cant handle a sick friend in their lives. Either they are too fragile themselves or they are too busy, and self absorbed to carry any more weight. and yes, sick friends are heavy.

its those friends that wont let go, and wont let me just have MS that are making me insane. Nothing is off limits. MS is different. you WONT cure MS! Sure we are all hoping for a cure, but as of this moment, one doesnt exisit.I have enough doctors! I dont need any more arm chair med school students in my circle.

I just want a friend who drops by to go shopping say "Hey! you look great today, but how do you feel?

How about letting the person with the disease lead the way!

its sad because I feel my circle shrinking yet again. These were hard core friends, or so I thought. I just dont seem to be able to get the world to understand. I AM trying! If a world of MS specialists cant cure MS, well...maybe the extra added stress of everyone constantly wanting me to keep trying things is making me worse! GO AWAY NOW! If you cant be helpful, then you are hurtful.

I am tired of having to hurt peoples feelings when I say "LOOK! enough! stop asking me to try things! just sit and be my friend, not my dietician." they walk away blaming my disease for making me short tempered, or my disease for giving me such cognitive dysfunction that I can listen to the advice that may save my life! its not that they were a bad friend, its that I am a bad patient. at least that is the way some of them are trying to make me feel. As if today was just a bad day, and I need the lecture repeated tomorrow, or next week, or next month.

I love when they approach my DH later on to say how "grouchy" I am. He is good, he says "she is tired of folks trying to give her quick fixes! she just wanted a visit from a friend, she didnt need the lecture." of course, they get defensive and want to hold tight to their cure of the day.

How many of you have been given articles on this blocked neck vein lately? My in box is full of "congratulations! its a cure!"

Yes! my MD is positive I have MS! its not a gluten issue. Its not Lupus, or Lyme, or whatever your second cousins next door neighbors aunt had 20 years ago that stumped the MDs. its MS! I have passed all the tests. Its clear cut, no mistake, and it wasnt a blind guess on the MDs part. No one is gonna waltz into the room and go "oops! sorry." They make careful sure its MS before they will even nod in your direction. They can and do keep folks on limbo island for years! They wouldnt call me off unless they were sure.

I think I am just sad to lose more friends. I have 5 on the chopping block this month. I have had enough, and they are not getting the message. Good people, but they just dont get it. MS has taken so much from me, I hate to see it take more.

You're right on the money, Dejibo! I don't know how some people can think they know more about our conditions than we do. Heck, we're the ones who have to go to all the doctor's appointments, suffer through the various tests and "treatments" and, of yeah, live with it 24/7.

I understand when they want to share a "new" breakthrough with me once. It's the continuous nagging that drives me nuts. Better yet, when they're offended or feel betrayed because you won't blow your nest egg to go visit "Dr. Quake's Outer Mongolian Yak Milk Clinic."

Frankly, no one is sicker of talking about my condition than me. I want friends who can help give me a few moments of distraction rather than fling it in my face all the time. I'm blessed to have a couple of friends who get it. They include me in activities they think I'll enjoy, but are always careful to watch for signs that I'm tiring or feeling overwhelmed. I don't know what I ever did to deserve these great people, but I am so grateful they're there.

Cheers

No real tips... but wanted to give HUGSSSSSSSSSSSSSSSSSSSSSSSS
many HUGSSSSSSSS
although my hubby and kids, although may not understand my undx stuff, they are well meaning and know when I am feeling uggy.. and comfort and help.

sometimes family do not understand me though, like you saying... lucky not too many push things at me....unless send me notes on MS or other stuff that is informative.. like someone sent me a article on the meds that are being worked on that are orally. COOL of her, here she knows I have no dx... but she also knows my symptoms and wonders...

I say, next time anyone gets the snake oil ideas out, say LISTEN, I am on a plan with my doctors...I have accepted my limits, and my symptoms... please help me by yOu excepting me for me... and thank them, many do these things thinking a way to help... or actually probably as they may not know how to be around without giving info stuff that you may not want.

hugssss,sarah

I dont think I've had anyone sharing the "cure" from Zamboni (the veins in the neck thing) yet. I've been reading all about it here.

My parents dont really do the medical research thing like I do. (and my dad's a nurse anesthetist, you'd think he'd read medical stuff occasionally)

Before all the MS stuff happened, I had three friends. My boyfriend, and my two best friends that I'd known since I was 11 and since I was 18. I wasnt a very outgoing person before this, and had just the two best friends.

I can count on one hand (for each friend) the number of times I've seen those two best friends since I got diagnosed. One of them I've seen more because the other one lives in another state. I think part of my not seeing them often has been partially my fault tho. I wasnt always the most attentive friend. Probably because I'm not married and I dont have kids, and my friends are all married and all have kids. I couldnt relate to them with kids, and now they cant relate to me and my pet illness MS.

I see my boyfriend more often, but not as often as I want to because he works a lot, but he makes an amazing effort to get time off so we can go out. (he lives 50 miles from me in another city)

Part of my problem I guess was that I didnt have more friends. I had friends that I worked with when I telemarketed in the late 90s, but hadnt talked with them since I got fired from that job. Well, maybe one person, because he made an effort to keep in touch with me, but that was it...

It sucks to not have any friends. At least to not have any friends who will have anything to do with you when you're sick.

being of native american heritage myself, i can tell you with absolutly no question.......we cant fix MS either