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What do we want to hear?

This has most likely been done before, but I am having a quiet 10 mins at work! Please take this as light heartedness!

Following on from the “what to say to wind up a person with MS” post - what do we want to hear? Or do we want people to not pass comment at all? I know it winds a lot of people up - but I like hearing that I look well. I want to look well - even if I dont feel it. I also like to hear about people who have MS who are doing the things I cant right now, it does give me a glimmer of hope. No-one really understands MS do they, even us who suffer with it cant relate to each other 100%.

I was going through a couple of the posts and flipping them around to the opposite in my head. I dont really want to hear:

God yeh, you do look rough.

Oh, they cant do anything for that, youre doomed.

Thoughts? Again - no offence intended in which way shape or form!

For me just having someone ask ‘how are you?’ and actually CARING/LISTENING to the answer, that would be a start!!!

I would prefer strangers to not pass comment at all about my walking stick unless they know me and are genuinely asking how I am. I hate people pulling sympathetic faces and looking at my stick enquiringly expecting me to offer an explanation. I usually ignore that.

IF I have offered the information that I have MS, then I would like them to be honest if they know nothing about it and ask how it affects me rather than assuming that I will be the same as their next door neighbour’s great auntie Nellie. If they do know something about MS then they could still ask how it affects me (because I may have a very different type to the one they’re thinking of) and, if appropriate, say that there is lots of ongoing research and new treatments coming out all the time so hopefully I could find something that would work for me.

For friends/relatives, then I would like them to ask how I am and genuinely want to hear and try to understand how it feels. If they don’t genuinely want to hear, then don’t ask …

Tracey xx

Oops, I should have read that properly when editing - I changed people to strangers but left in ‘unless they know me’ lol!!

I don’t mind people asking how I am - if they are genuinely interested, that is, and not just looking for the standard: “Fine, thank you”.

People are curious about it, and do ask things like: “Does it hurt?”, and: “What sort of problems do you get?” I don’t find that intrusive, as I think they have a genuine interest in trying to understand.

Some questions are more difficult than others, and based on misconceptions. For example, I was having lunch with a friend, recently, and he said: “Doesn’t your doctor tell you what will happen next?”, and was quite surprised when I answered: “No, because he doesn’t know; no-one does!”

To be fair, he had recently dealt with a family illness, and ultimately bereavement. That illness, in contrast with MS, had quite a defined trajectory, and he had felt frustrated with doctors for not sharing what to expect beforehand. They’d only told him after the event: “Oh yes, that’s usually the case about now”. He felt that if he’d had more information, he would have been better prepared.

So he was quite surprised there are illnesses where you can’t predict: “This is what we can expect”, or: “This is roughly the timescale”.

I wasn’t offended by it at all. It’s just interesting that people assume you’ve got a prognosis, when that doesn’t really apply with MS - you just have to take it as it comes.

Tina

x

Hiya

I love being told I look well (even when I feel rubbish). Why? Because it means that my attempt at acting and looking like I don’t have anything wrong with me is working. Which in turn means that I’m treated like a ‘normal’ person not a ‘sick’ one.

Sue

x

Hi all, At the mo, you wouldn’t know there was anything wrong with me (unless you catch me having a fall) - it’s my own family, they don’t ever ask how I am feeling, except my mum, and then she has every symptom/sensation that I have! I think they are still in a bit of denial, - if we keep quiet, there’s nothing wrong type of thing. Since I was dx last nov, I haven’t even had an offer of company to my ms nurse or neurologist appointments. God forbid I become unable to manage myself at any time, I really don’t know how they would cope. Let hope we never have to find out eh? Best wishes to all, Sue x

Hi Sue,

If you would like company to any of your appointments, have you thought of asking, rather than waiting for someone to offer?

They may well be taking their cue from you, as it’s your illness

Personally, I’ve never wanted friends or family there, and would feel very much more anxious and inhibited. I get stressed enough already, and don’t feel involving more people would help. I’m better tackling some things alone.

But we’re all different. Why leave it to your family to guess what you want, but then feel hurt because they didn’t guess right?

Tina

x

I’ve had quite a few people say to me I don’t really understand ms and what it entails and I respect them for having the decency to admit and ask I’m def not offended by it You get the usual they know best people and I just switch off don’t say much. My hairdressers hates drugs companies I prob agree with what he says but every appointment no!!! So getting a new hairdresser lol And then some people surprise you with the knowledge. But it’s nice you get told your looking well even though you don’t feel it x

My mum was refusing to believe too sue or rather didn’t want to believe and my dad came with me to neurologists etc. Though I got told when I was admitted to hospital. I don’t mind going myself but sometimes I may forget what is being said.

What do I want to hear? Pretty much anything that’s kindly meant is OK by me. Genuine kindness is always welcome, even if the way it is expressed is clumsy or unintentionally comical.

Naturally, the opposite is the case for anything unkindly meant, however superficially OK the words might sound.

Alison

hiya

i want to hear convo and banter!

yest whilst approaching me at bus stop the driver was shaking his head to indicate i wasnt getting on. when he stopped and opened door i asked what he was meaning. he said he was comfy in his seat and didnt want to get out to put ramp down for me! he was already out his seat to do so! once i was in and he was putting ramp back up he asked if i wanted to drive the bus. i am aware that some might be upset by this BUT for me he was joking/laughing with me-not at.

in tesco a person pushed in front of me then realised i was in queue. i said its ok-go ahead, i have a seat! instead red face-his not mine!

during the past 2years i have learnt so much about practising patience!

On holiday, a few years ago, a guy saw me in my chair and asked if I was one of the heroes ? I didn’t reply but thought that was a nice way to describe someone in pain and having problems walking. It was only when I wheeled away, that he turned to his wife and said…All those soldiers are heroes and deserve our respect. Oh well, it was nice for a few seconds. Neil

I get the 'but you look really good/well" quite often. Sometimes even after they’ve seen my pathetic attempts to walk - struggling even with two sticks on a bad day. I quite like it when people say this, thinking about it. I think they’re complimenting me on my skin, hair and slenderness (the last is an MS gift - I was two dress sizes bigger before I had the disease).

We’ve found a cure, when do you want the pill. It’s good to dream. Jan

remember when I came out of the m.s. closet a work colleague said ‘I’m not surprised’ - I was devestated.

and the other colleague who told me about her neighbour who popped round to another neighbour to pop a lit cigarette in his mouth as ‘he’d got m.s. and was paralysed from the neck down!’

I also like being told I look well - it quite cheers me up. After all, I’d hate to look as bad as I feel some days!

Looking at the latest comments on this interesting thread, I came across this comment from me and thought what a smug cow I sounded. Anyone who knows me would laugh at the image of me being effortlessly Zen-like and accepting of people’s foibles. On a good day, maybe. On a bad one, I am much more likely to (privately) see red and spit feathers and swear fluently at some of the stupid and asinine comments that people have made to me over the years!

Alison

There is an effective treatment/cure when would you like to start treatment/medication. Can I help you (rather than watch me struggle) Oh, and I like the banter too.

Hey Alison - you didn’t sound like a smug cow first time round but your second post made me laugh.