
Multiple Sclerosis (MS) Support Group
This community is a place where members can discuss current events and weigh in on what's going on in the world.
When People say, "So what is MS anyways?"

kazinmich
So, I've told a few people I have MS.. ok maybe a dozen or so, and almost all of them come back a week or so later saying, "So what is MS anyways?" I can't help but think when I hear something is wrong about a friend or family member the first thing I do is research it online and find out what it is so I can ask questions or know how to offer to help. Now all the people that have asked me this are very computer literate. So why are people so apt to not ask up front, not read up if they don't ask? I end up explaining to them nerves are like wires, and the body attacks itself, pulling the outer protective coating off of the nerves causing crosswiring, and sometimes sparks.. lol.. They always look at me funny and cut the conversation short. I figure maybe they didn't look it up or ask sooner because they don't want to deal with the reality of it or believe there is anything wrong since I don't seem sick. I dunno. Do you get this often?
Posts You May Be Interested In
-
A friend sent this to me..As far as I can see, grief will never truly end.It may become softer overtime, more gentleand some days will feel sharp.But grief will last as long as Love does - ForeverIt's simply the way the absence of your loved onemanifests in your heart. A deep longing accompaniedby the deepest Love some days. The heavy fog mayreturn and the next day, it may recede.Once again, it's...
-
Today is my 25th birthday, to my somewhat lack of surprise I can see already no one really seems to care. I've always been the kinda person to make sure that everyone I Care about feels appreciated and knew somebody had their back. I can count 4 times this year when I Went out of my way to make sure a "friend" felt good on their birthday, especially if they got left hanging. Its early in the...
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!
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
'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.
works everytime!
She
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.
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.
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???
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.
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.