Forum

People need educating!

I’ve had so many comments from ‘I thought MS is what old people get’, ‘At least you don’t die from it’ and the best one yet has to be ‘I can’t believe you have MS, you look normal!’ I will take that as a compliment then!

So who’s going to do the educating? I think we have to!

These threads about strangers’ comments always make interesting - sometimes even amusing reading.

You’ve encountered the assumption nobody dies of it (actually, I think some here believe that one).

I’ve had the other extreme, of assuming it’s always terminal! (Well yes, but only the same way life itself is).

And it’s not always strangers who are clueless.

Mum was relating to me the story of a friend who felt ill at the Olympics, popped outside for five minutes, and got whisked to hospital, because she mentioned she had an underlying condition. I said: “Oh dear, if I feel ill for five minutes, I’d better not mention the MS; I DON’T want to go to hospital!”

Mum said: “Yes, but she’s not like you: she’s 70, and has something serious.

Oh God, I’m so glad MS is not serious - I never knew.

Tina

x

Thats a classic! But where do you begin to explain what it is? I know people’s eyes glaze over if it takes longer than 2 minutes to explain it. You try to remain positive and keep going and they assume that ‘its not that bad then’, Another classic is everyone I have spoken to knows someone who knows someone else who has had it for years and never had any symptoms and they always end up saying ‘and he/she is in his/her seventies now!!’

I get the “my friend’s friend has had it for years, and lives a eompletely normal life!” all the time.

Actually, I think my experience of MS is quite a lot milder than some of the scray stuff I read on these forums that others have to put up with, so maybe I should either lay it on with a trowel or keep my mouth shut to avoid being that friend’s friend who isn’t suffering much.

The biggest hurdle will be to get over the ignorance of the new PIP assessors regarding chronic symptoms of ms as fatigue doesnt figure in their points based system (descriptors - as yet) I say the ms society should make sure all government departments are fully aware of all the symptoms of ms too because we have enough on with people in general let alone agencies paid to eradicate our only means of survival beginning next April, 2013

x.

Me too DaveC, I too am one of the ‘lucky’ ones with fairly mild symptoms compared to some on this forum. Maybe I feel a little guilty because I was one of those clueless people until I was diagnosed, its only now that I realise the importance of educating people. Gonna be difficult to educate those government depts though Anonymous! Pity there isn’t such a thing as an ‘MS Experience Day’ which they have to attend.At least celebs bring about more awareness of it although it comes with the usual tabloid hype which probably does more harm than good…

I was ignorant of MS symptoms and never knew about RRMS, these days find myself keeping quiet about some of the symptoms as people aren’t really interested, sometimes I lose my rag with family when they fail to see how I am feeling, I find they are more interested about Migraine I have been suffering recently, as they can relate to it themselves.

Wendyxx

Yes Wendy, I can relate to that. One of the hardest things to deal with is the fatigue, I’m sure some friends think I use it as an excuse to get out of things. At the moment my man has a cold and said to me only this morning ‘now I know how you feel when you say your legs feel like lead’. I smiled to myself.

Hi i find talking about my symtons to freinds they sometimes say oh i’ve had that they seem to think fatigue is just an of day so when they ask how i am i just say fine most people hav’nt got a clue i have olso had cancer and still got told i was looking great

Hi i find talking about my symtons to freinds they sometimes say oh i’ve had that they seem to think fatigue is just an of day so when they ask how i am i just say fine most people hav’nt got a clue i have olso had cancer and still got told i was looking great

The last thing you want is sympathy with ms but when people tell you that you look great when you feel pants and know that you look pants, you know that they are just trying to make you feel better… maybe they are people who care about you and are frightened about the unknown…

Been there done that, got the T.shirt

Sue

It’s all the invisible symptoms they can’t see.

I just say thank you, but now have a mental list of who of my friends is going to say ‘you look so well’ it’s almost

becoming a game! Makes me smile.

Jenny x

hi,im catnips and have suffered with MS symptoms from 14(although i just shrugged off the symptoms,i did tell my dad,who did the same!!) and was diagnosed in 1998. all the above comments i completly relate too,and am so relieved to see that im not alone!! the fatigue is something i wouldnt wish on my enemy,and its that that i cant bear(and suffer it regular),with family and friends pretending they understand,when i know they dont! i get bad tempered rarely,but i explain as best as i can how im feeling. i live day by day,dont make plans as its impossible to know if u will have a good or bad day.

Don’t you just love’em!

Pat, that would have been too much for me. I’d have had to put on my best straight face and ask her what happened and how she got rid of it… couldn’t have resisted that!!

LOL Pat, that’s definitely one of the best quotes ever!

I find one of the hardest things to deal with is the dirty looks you get using the disabled loo, just because you’re not in a wheelchair. People seem to think that if you’re not visibly trailing a limb, there’s nothing wrong with you - tell that to my bladder!

I quite often get kids at the school where I work comment on this (which is understandable as they are children after all) but when I explain I have an illness you can’t see they’re usually just interested in the gory symptoms to be honest! So I like to think they maybe won’t automatically think ill of ‘normal’ people using disabled facilaties in the future :slight_smile:

Hi Pat,

It sounds like she should be working for ATOS !!