I appreciate that people who have known us pre-stroke don’t always know what to say when they see us as we are now. But I get a lot of:“You look well - you look really well”. I’m not well. I don’t need a pity party, but I am living with four illnesses any one of which could see me off. And I’m stuck in a wheelchair, needing 24 hour care for the simplest things. So are most of us here. Having been brought up to be polite, I reply with a ‘thank-you’ I don’t feel, though I did give someone a “ironic, isn’t it?” as she was a medical professional who I thought would have known better. Like the rest of you, I manage my condition as well as I can, but do you get this? And how do you manage it?
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I have a perpetual struggle.
I have a difficult, maybe impossible, aim.
Moving stroke out of the way, keeping it out of the way.
While I try to explore possibilities and live the life that I have .
So far, quite a mountain of disappointments.
Occasionally something wonderfully different, satisfying and a sense of getting somewhere.
No cure. No final resolution.
No defeat.
There is a tomorrow.
keep on keepin on
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I think people are trying to be polite and trying to lift your mood maybe. It has to be better than someone saying oh you don’t look good today.
I get it all the time. Like you I just say thank you and move the conversation on. People who aren’t suffering like we do won’t understand - that’s no different to any illness I suspect.
I have probably been guilty of saying it to people in the past too.
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More often than not, I get the you don’t look like you’ve had a stroke. I don’t seem to get people telling me I look well, but if I were to give a response to that I would say back that it is all smoke and mirrors.
The one phrase that irks me is when people say to me, as long as you’ve got your health, because I don’t feel I do, so where does that leave me in the scheme of things then? 
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I did have someone who was chatting to me on the phone about 4 years after my stroke say you don’t sound like you had a stroke. Didn’t realise we were meant to sound a certain way
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I suspect these kinds of comments come from reductionist thinking, especially because stroke is portrayed socially in a certain way, it would be trite to say to someone, you don’t sound like someone who has a migraine, or you don’t look like someone with clinical depression.
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This topic comes up quite often on this forum and I always find myself wanting to comment and I suspect I [almost] always do. I am not sure I always say the same thing because I guess (or at least right now as I write this) I can see both sides of this.
But I have a feeling, in the main I think the below hits the nail on the head.
I really do believe this to be the case.
I then find myself wondering why it is people get so “upset” or emotional about it as I suspect @Dexster is/was when writing this post.
If as suggested by Anne, people are trying to be polite or to life your mood then why is this taken to be someone pitying you?
So now, I have to ask the question, what would you rather have someone come up and say to you if you don’t want them to say
Would you rather they say, “You look awful, it must be terrible being a stroke survivor?”
And if that was said would you be happier?
I guess this is the interesting bit.
I feel we do all manage this differently.
Some of get really pissed off
Some of might be gracious and accept that someone is being polite, taking an interest or just trying to make conversation or encourage us.
Others might want to educate, maybe by saying “Yes, I may look well, but …”
And just generally speaking, and I believe as alluded to by @Rups as a non-stroke isn’t this just the normal (dare I say it, British) way of saying “Hello” or starting a conversation?
And I am not sure if this was a one-off, but I was in this exact same situation a while back and I shared that experience on this forum.
Here is is …
Maybe this is not the same thing we are talking about?
P.S. I saw Thomas the other day and he is still doing his own shopping, though he was using his walking stick!
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I don’t think it’s possible for anyone (even a medical professional) to know how it feels to have had a stroke. Sometimes I point out a random person nearby and say “go on, move his arm”. When they say they can’t, I say “now you know how it feels”. Another phrase that drives me nuts is “yes, but you’re still you”. Well, no, I’m not actually. I can’t dance, walk properly, run, write with my right hand etc etc, but I’m not making a fuss about it.
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Thank you Minnie B for hitting this nail on the head. No, ManjiB I don’t want people to tell me I look awful, but there are plenty of phrases that would be appropriate in greeting and not tell me how “well” I look. I do respond with grace because that’s how I was brought up, but I can’t help thinking that, as greetings go, it is crass. They don’t have to tell me I look like a heap of ordure tied up ugly, but telling me I look well when I’m clearly not is not polite either. I was just wondering if it’s just me or if others are being told how well they look as they try to navigate these unpleasant circumstances. It comes across as if I am malingering.
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If I am struggling with my condition and people ask me how I am, I’ve stopped saying, not too bad, and instead I tell them straight out that I am feeling a bit wobbly today, and it is good to get it off my chest.
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I can safely say you are not malingering - this is how you feel and it is perfectly OK for you to share your views. I can agree with @MinnieB 's comment that it’s not possible for anyone other than stroke survivors to know a stroke survivor feels. That said, then the same applies to any other condition does it not? I can’t think of an example of the top of my head, but maybe you can still understand what I am trying to say.
As you and MinnieB feel so strongly about it, perhaps you can help me by suggesting how you would like to be so that it doesn’t come across as being impolite. I have to say I don’t have that much first hand experience of speaking with stroke survivors, but to date, I have had no one get upset by me asking them how they feel or me suggesting they look well etc.
These are phrases I myself use in general and in some ways I do that consciously because I don’t want the person I am speaking to to feel “different”. I can’t say for sure, but with the current “political correctness” - sorry if this is inappropriate to say but I don’t know how else to put it, it is difficult not to offend people just by opening your mouth to say something.
Going back to how this post started
So is the real problem here with people that knew you before the stroke saying these things after you’ve had the stroke or just anyone who speaks to you?
Again, with people who knew the “before” you, is this not how they always spoke to you i.e. when you met for a coffee, or bumped into each other after a long time etc. or are you saying they used to speak to you differently and now they have become offensive or pity you because of your new post-stroke situation.
I am sorry to continue this but I am very keen to understand this as it does come up often on this forum.
Perhaps members can come up with suggestions of how they should like to be addressed next time someone comes up to them and then perhaps we can all feel less uncomfortable?
Perhaps my ignorance as a non-stroke survivor shows 
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Maybe phrases along the lines of How are you doing/getting on? Would be preferable.
I know when people ask me how I am how I respond depends on who has asked. If it is someone I know but wouldn’t class as a friend I usually say fine thanks & nothing more. If it ia a good friend that I might be having coffee with for example I would probably be more open with them and tell them how I am feeling.
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I wouldn’t say I feel strongly enough about people’s comments, to make a big thing of it. I would rather people just treated me the same as everyone else. I don’t usually mention I’ve had a stroke unless someone asks. I have a disability, like thousands of other people. There are some things I can’t do, which may or may not affect my daily activities (self-tapping screws are tricky little blighters this week!). I don’t really mind people asking me what happened to me, (but not as an opener to a conversation). People are naturally curious about why someone looks or acts the way they do, but it should not affect normal conversation or give people the right to make comment. I suppose I notice it more because I work with adults who have learning disabilities and I would never ask any of them about why they are the way they are (and if I did I would probably be asked to leave - and never come back!) Sorry. That went on a bit too long. Must get back to my self-tapping screws!
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Thanks for explaining MinneB and no need to apologise. I love long posts as you may have noticed 
Self-tappers - nice. So you’re into DIY or maybe doing some self-assemble furniture? Good for you
I thought self-tappers were a god-send as it meant I didn’t have to drill pilot holes. This was in the days when you still used hand held drills, not your cordless all-singing all-dancing kit you get these days
Enjoy your activity and do mind your language
Self-tapping screw are OK. It’s the bolts that are the problem, because you have the nuts on the other side!
Mind your language? Not sure what you mean…
I can’t remember why I wrote this, but I am going to guess it may have been my silly reference to the main topic of discussion in which how people greeted others or comments they made weren’t deemed appropriate?
I often do and say silly things and sometimes I get carried away with wordplay etc. My guess is this was one of those, it was nothing personal
Even I @ManjiB, the chap who brings the pun to a party was a bit perplexed at this one. The only thing I could think of was screws as in prison officers.
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