…such and such’s Dad, Brother, friend, colleague has MS and you’d never know it looking at them. They’ve had it 10, 20, 30, a billion years and they’re fine… Aaaaaaaaaaarrrrrrrrrggggggggggghhhhhhhh
I hear you Mrs H, my personal favourite is when somebody’s mothers 3rd cousin twice removed has it and they get a ‘bit tired’ from time to time as well! It annoys me but I’m learning to just let it wash over me. X
smile then say but mine is unique,unlike any other (which we all know that,no 2 of us are/experience the same-yes there are similarities but we are all unique, just like everyone else) not worth discussing with them so confuse them!
naughty mischievious ellie
I’ve experienced these responses from several people too, almost like they see you as a complete fraud for not being “fine” like the person they also know that has it!
If only they tried walking in our shoes & felt the way we did!!
Thats’s exactly how it makes me feel, Mel…
Hi I think people mean well and try an encourage you that all will be fine but it is annoying. When my first child was born (20 years) ago with Downs Syndrome all I got was… “They are such happy children”, “They love music”, but the best one was… “You must be very special in God’s eyes as he has sent you a special child to care for!” Aw well I just felt devasted at the time which on top of all those pregnancy hormones comments such as the above were all too much.
I think we ourselves may be partly to blame. What do I always say when anyone asks how I am?
“Fine – thanks for asking”
no matter how crippling the fatigue or bad the pain.
Those people probably go on to report that they know someone with MS who is always “fine”
Could be worse. My mother told me yesterday all about a young girl she knew who got MS when she was 17 and was dead before she was 30. About how she used to have to carry an oxegen tank around with her. I asked her was she sure it was MS she had as it didn’t sound like MS and she was adamant it was MS.
I’d take the positivity all day every day over the “oh poor you, how on earth will you manage” or “oh, if I found out I had MS I would just die, it’s a terrible, terrible thing” or “my grannys cousin twice removed had MS and she died/was bed bound/couldn’t talk, eat or swallow and died when she was 40”
We are either saints or sinners.
Saints = we are really brave and carry on living a normal life without ever moaning or complaining
Sinners = all we do is go on about our MS and if we tried harder we could overcome it
In reality of course we are just human beings who are sometimes saints, sometimes sinners, and most of the time somewhere inbetween.
In reply to the: “X has it, and they’re absoutely fine!” comment, I’ve sometimes replied with: "I expect that’s what they’d like you to think…
My friend (now relegated to Christmas card only type friend) insisted her neighbour with MS was “absolutely fine”, as she’d seen her putting the children in the car, for school. In other words, she didn’t really KNOW the woman, but she must be absolutely fine, if she still drives the kids to school. I thought: “But she’s a mum; what’s she supposed to do?” I don’t know if there’s a partner on the scene or not. She can’t phone in and say: “The kids can’t come to school today, because I feel too cack.”.
This same woman apparently feels “much better on her injections”, which is a bl**dy miracle, because we all know they don’t treat symptoms!
My patience seems to be slightly limited at the moment. I need to find a longer fuse. But that comment really ticked me off today.
You’ll find the cousin’s friend’s mum, or whoever it is, is always “absolutely fine”, OR they died. There’s no middle way.
It’s really not any more reassuring to be told: “Oh, so-and-so had MS”.
“Oh dear, was he/she OK?”
“No, died within a few years.”
Oh my hubby’s friend nearly swallowed his own tongue…when I was first diagnosed he was telling hubby how if I needed anything at all, just to give him a shout because he USED to look after his next door neighbour who HAD MS so he knew what it was all about…and then realised that he had used the past tense…hubby said he couldn’t back track or apologise enough. Poor fella !!
I have honestly never had this problem, but freely admit that it may be due to not actually bothering to listen.
Like being a little bit pregnant, that one, isn’t it?
I suppose, trying to be charitable, she might have meant she once had clinically isolated syndrome (CIS), which never developed into anything further. It’s just about possible a lay person might describe it as once having a touch of MS - some of the clinical features, but no diagnosis.
I still think an awful lot of people get mixed up between MS and ME, though. I’m not sure it’s possible to have “a touch of ME” any more than MS, but I do think people confuse the two. When I was diagnosed, my brother’s partner (no wonder I’ve never taken to her) said to my mother: “Huh! Your daughters! If I kept moaning all the time, I could get diagnosed with that!”
Mum said: “What, have you got lesions on your brain, then?” She shut up after that.
I can only think she must have been confusing it with ME, which used to be known as “yuppie flu’”, although I’m not saying it would have been OK, even if she had meant that. She seemed to think MS was an imaginary disease, that you can be diagnosed with by whining a lot.
The irony is that far from whining, I’d ignored the symptoms for years, and rarely been to the doctor’s about any of it. It was only with great reluctance that I pursued a diagnosis, even after I’d been warned it wasn’t trivial, and might get worse. So the idea I was some sort of hypochondriac, who haunted doctors’ waiting rooms, pressing for a label for my “imaginary” illness, couldn’t be further from the truth.
I know just what you mean, one of my friends said " ooh my uncle is 76 and got ms and he’s only just started using a stick " Well whoopee doo for him, don’t get me wrong, I’m glad her uncle is relatively ok but people just tend to think that everyone with ms is exactly the same and they’re not really interested in the fact that this is so not the case.
Hi Aitch,I get what you and the others of our esteemed club are saying,but being a major gobs–te of this parish when announcing myself to an unknown person I say Multiple Sclerosis to avoid confusion with other letters and sitting on the power chair goes some way to indicating that I am knackered.
Today I was explaining things to a strange stranger and said, “I’d be willing to be blind every other day to get rid of the pain”. He realised things were serious and drifted off into what looked like a deep sleep. Wendels makes a good point 'cos when somebody asks how you are,how often do you stoically reply that you’re alright. I do it all the time as they’re not really interested and I haven’t got the motivation to start explaining demylenation(?)
I saw a big yellow thing in the sky today and am wondering if you know what it is?
Hey I know, I’ve had some crackers, like:
“I know a girl who had a dose of that a while back”
“Triggers can affect it can’t they? let me know if me standing next to you with my coffee is a problem”
Yes, it’s the bloomin sun which brings out the bloomin ice cream man. Everytime I nodded off…Yankee bloomin doodle bloomin dandy…shut up !!