I don't generally get that question a week later, it's more like right away. I'm hoping these people aren't loved ones or close friends?
Disability makes many people uncomfortable. However, if people are comfortable asking more about your problem, they are usually comfortable getting an answer! These guys are definately the exception, not the rule I'd guess!

I think there's a basic level of "physical illiteracy" out there with regards to health. Most people don't think much about their bodies until something goes wrong, and reading some of the neurology stuff out there can be like reading a foreign language. Often I think people just want to learn about the condition in terms that they understand, without a lot of "medical speak."

Be glad that they ask you what MS is -- they're trying to understand, even if it's a week later. I've used the metaphor of telephone wires too -- with the destroyed myelin being like a stripped wire that sends/receives a lot of static when trying to "message" the rest of the body.

I have all of my lesions in my spinal cord, so I also use the image of a highway that has had one accident after another occur on it. It causes the nerve signals to slow down, back up, or come to a screeching halt much like cars would, causing the variety of confusing symptoms depending on where the "accident" (lesion) has occurred.

Anyway, it doesn't bother me when people ask. I'd rather have them ask and me explain it, than have them say quiet and make assumptions about what I can or can't do. I'm an "information gatherer" myself -- like you, I read/learn everything I can as a way of empowering myself to deal with MS from as many angles as possible. Many people aren't like that, though, so if I can educate them in a way that makes sense without being patronizing, I do it.

-Karen

If our neuros, with all their degrees and titles, can't figure it out then who are we to understand and get others to. Just tell them you don't know but you have alot of pills. Thats all society understands,"He's real sick they have him on all kinds of pills"

MS is not an easy thing to explain or understand.Sure, it can technically be a lot. For us, sure we have learnt about it. We have to. I avoid talking about axons and Tcells. I enjoy doing research anyway.
'The brain is a big place, 50 million nerve cells all in it' is a good starting line.
Why do ppl have to know so much? It's easier to say 'i have cancer' - cancer has more press coverage and is comparatively simpler to understand.
I would rather ppl ask me than shun me. I'm approachable on most days. The scooter is a conversation piece, a conversation starter. When i smile it's an icebreaker.

The electric cord is the way I explain it. If there is a nick in the covering the electricity doesn't get thru.

I tell them to look it up on line. That will describe it better than I.......

works everytime!

She

I don't get upset all for those asking what it is, actually, I don't mind telling and explaining and can give websites etc to help.. lol. The first thing I always tell them is it is not contagious. I do take baby steps when explaining though.. I guess there are two things I do get upset about. The first is the reaction of most - an oh or head nod and then silence and then usually switch of the subject. I try to make light of it too when I see this reaction in saying, well, it's better than a tumor etc and I can live a relatively normal life, etc. Maybe I'm just selfish and think if these people are my friends (and family) they would care enough about me to look it up and research like I would for them. Maybe that's it. maybe I just need to separate the fact that just because I would try to learn the most about someone I care about, that other people care, just may not think or show it the same? Thanks for the therapy guys!

My meuro xplained it to my husband- that it is like a mouse getting into the wiring in your house, that the wires(nerves) are damaged but may work fine most of the time. But if the roof leaks (cold or flu) then sometimes you will have a house fire, and sometimes not. It is just an unpredictable thing. That you "wiring may be great one day., bad the next. I've told my supervisor (I work at a school) and she has me do extra things (sitting down) rather than monitoring the cafeteria or gym on bad days.Some people are just nosy. Insensitive people don't go away just because we have an illness. Sometimes people just don't know what to say, or feel uncomfortable about "crossing the line" of what is ok to ask.

Oh, I like that analogy!!! I think I might use that... and now you have me thinking of another one.. We had a car once that would work great, but something was wrong with the wiring and certain days the windshied wipers wouldn't work, or the heat or the stereo. It was always a guess what was going to work or not work next.. LOL. I guess it's a good analogy as long as I leave out about the part of it being the last straw when the radio didn't work, the heat didn't work (in the winter) and it was leaking, so we gave it away.. LOL. I don't want to be traded in!!! ha ha ha

I love when they ask a question, you explain it and then all of the sudden they change the topic. I have accepted that when they do that, they are scared for me and don't know what to do for me. Like there is anything they can do except be there when needed.

I also just love when you tell someone you have MS, they say "oh, I had an aunt die from it". Just what I want to hear! Good Grief.

I have also had a doctor tell me "you don't look like you have MS" I got so mad at him I shot back with "What does someone who has MS look like? Should I be in a wheel chair or have a cane?" He just looked at me with this dumb look on his face as if he shouldn't have said that. Needless to say, I haven't gone back to him.

since i have had this for so long but undiagnosed. when i was finally told i had ms i myself copied booklets from doc and off the computer and had a get together to announce that i had ms. i then told everyone i had booklets with info in it,and to take one if interested. so i really don't get many questions about it.

Hey
I totally understand what you are saying. Most of my friends, family do not know what it is nor care to see what it is. They can't see it so I seem normal so to them it isn't a big problem.
I am a single mom so I am the type that does everything on my own and works like two people. When i first found out I had MS and wasn't a hysterical woman the only one who took the time to understand it was my mom. I don't explain it anymore and if they don't get it, well it's their problem, not mine.

okay here i go again crossing that line that will once again most likely gain me hate mail...ah well so be it ...grin.. getting used to it..
my question to all of you is this...


If we want people to understand more about MS and what it is than i would think that we should be able to agree on one basic thing... the public in general needs more education on MS besides the fact that there is a read-a-thon each year for elementary school... a walk-a-thon.. a bike-a-thon... and caranation day (in canada at least)

The lack of understanding for this illness comes from the simple lack of education.. plain and simple...

Who better to educate people on MS than those of us who have it??
We are the Front line of MS.. we live it.. we experience it... we are IT...

So i would ask then.... why the hell does everyone get so insulted when people ask you what it is??
Why take it so personally??\

I know Goose has a pro-active role in education of MS... i love Butterflys approach to how she handled it...
But for everyone else...
How can you expect them to know ???

Personally i knew nothing about MS before i was dx... not a blessed thing.. i am not ashamed to admitt that.. there was no education about it other than asking for money... there still isnt... all there is is requests for money out there...
If you guys are so mad at the lack of understanding that you are getting call your MS society and tell them... demand that they put some of the money i hope that you helped fund raise to use in educationing people about what this illness is... don't just sit back and bitch about it... get pro active about it for crying out loud...
And of course when we tell someone that we have ms and there is no cure they are going to turn away looking lost in the conversation... at least with cancer now there is some hope... how do you expect them to react... do you really want them to pat you on the back and give you a false ...everything will be okay???

oh yes I get that 'you don't look sick, tere is nothing wrong'
maybe referring them to a site on the net would be helpful to them. Generally people are just lazy if they hear about something that is not directly happening to them. That has been my experience and really I can't do anything but just bow my head and shake it. Don't get me wrong, I am not a negative thinker when it comes to this condition (can't be) but I do have a pretty good read on how other people just want you to just spout off facts about a condition that is new to you and you are just learning about as well. It is frustrating to say the least still and I have had it for 13+ years and have fond that people are just not interested in soing any research on healethconditions unless it is thier own.

Read a good article this morning. Here is the link & part of the article.

http://www.news.com.au/entertainment/story/0,23663,21820057-5006050,00.html

WHAT happens when the link between the body and the brain gets mixed up? Ask someone living with MS.

Imagine living with a condition where your brain tries to tell your body to make a move, but the message just doesn't get through.