Forum

Everyone knows someone with MS

Ok, am newly diagnosed (RRMS) and getting my head round it. I have told those who I know well and have supported me both in my family and at work. Everyone who I informed either knows someone with MS or has a relative/friend who lives next door to someone with MS so it was quite refreshing when I informed one of my colleagues who is a social worker/child psychologist for her to say “You’re the only person who I know has MS!” and was more interested in sitting with me looking at this website rather than giving me their opinion/experience of others.

I know people are well meaning but knowledge is power more than my Brother’s Mother in Law who lives next to a man who has MS!

Sorry, Rant over!

And those people with MS fall into 2 catagories - in a wheelchair in 6 mnths or had it for years with no ill effects.

It either scares the bejesus out of you or belittles any symptoms you may be strugling with.

Jane

Ha! You’ve said it all both of you. I have MS and have neither met anyone with it in a wheelchair or anyone you wouldn’t know had anything wrong. Have obviously been mixing in the wrong circles. My advice? Live for youself and ignore everyone else’s well meaning ill informed advice.

Hi

Yes totally agree, so many people that I know said exactly the same kind of things when I told them about me. Amazing really because every MS patient is different, but to be compared in some case to people they only know through word of mouth is laughable!

The best comment is “you don’t look like you have MS” (what am I supposed to look like?)

Any way I just smile to myself, if only they knew what one day with this actually felt like.

Take care

Linda x

Hi

Yes totally agree, so many people that I know said exactly the same kind of things when I told them about me. Amazing really because every MS patient is different, but to be compared in some case to people they only know through word of mouth is laughable!

The best comment is “you don’t look like you have MS” (what am I supposed to look like?)

Any way I just smile to myself, if only they knew what one day with this actually felt like.

Take care

Linda x

Do I LOOK like I have MS? What the chuff are we supposed to look like, I wonder? 2 heads, 4 arms and 6 legs maybe! LOL

But appen at least 2 of those legs would work properly........now THAT would be worth wearing a weird pair of trousers for...but they wouldnt be a PAIR would they?

Oh shurrup…I`m getting dafter!

luv Pollx

This makes me laugh, because I had exactly the same with someone I had thought was a really good friend (now definitely relegated to a “second tier” friendship, if that).

“Oh, I thought you would look ill or something…”

Right! Pain and fatigue don’t show on my face, except that I might be wearing a frown rather more than a smile these days. And just because I happen to still comb my hair and wear lipstick doesn’t mean I’m “fine”.

Oh, and of course, she knows somebody with MS (that is, knows of her, I’d say, rather than knows her personally), and inevitably, that person is “absolutely fine”. Yes, she took her injections, and they made her feel lots better, and now everything’s alright. (Isn’t it a shame none of the injectables actually DO address symptoms? So I know that much, at least, is cobblers!)

And isn’t it wonderfully lucky that I’m “unaffected”? If “unaffected” means: “Passers-by can’t tell yet…”, then yes, I suppose I must be “unaffected”. Apparently, permanent fatigue and constant pain don’t exist, as long as other people can’t see them, let alone the mental stress of not knowing if you’re going to randomly wake up one morning unable to walk, talk, see, or whatever…

How divorced from reality do you have to be, to think anyone could possibly be “unaffected” by this?

T.

x

All my friends know somebody with MS (me!) and for about the first 6 years, I didn’t have “visible” problems. My mother however was in a wheelchair within about 18 months of her symptoms becoming “visible” (I think she might have been diagnosed much earlier than when she told us, but I don’t know) - I think that I’m at the opposite end of the spectrum from her. Everybody I work with and know outwith my circle of friends does know somebody with MS personally (not just me), so I am not surprised when people tell me they know somebody with it - they usually back that up with “but everybody’s different aren’t they”. Maybe this says something about the prevalence of the disease in the Aberdeen area, I don’t know.

L x

Your post made me chuckle because I relate to it sooo much. I was diagnosed about 6 months ago. Since then I swear EVERY person I have told has said something along the lines of - “Oh my brother in laws cousin has that. She has good days and bad days but,” VERY irritating I find…

Ever since I “came out” with my diagnosis, husband and I have enjoyed playing “MS bingo” because the number of years that friends and family members have had MS for just gets longer and longer!

However, so far, people who mention people they know with MS hasn’t annoyed me because I have not had people making crass or insensitive comments, just a lot of genuine varied experiences. I have been very, very lucky obviously. I knew nothing about MS before my diagnosis so I actually found it a real eye-opener when I was hearing how common (and varied) it was.