'But you look OK'

[Mayadill]

I don't look OK, spinal curvature, so I've never had this. Can folks explain to me where the idiots who say this are coming from? Broken limbs, skin conditions, people don't look OK. Systemic conditions, heart, liver, kidneys, GI, people being correctly treated look OK. My SIL has myeloma - but she looks OK. It's just bizarre.

[cycli]

been discussed many times. It's just the british politeness, possibly embarrassment and actually not wanting you to tell them what is wrong. By and large most people say this if you have good colour and are standing. Agreed it is stupid so I just say not really but am coping.

[Mayadill in reply to cycli]

Oh yes, part of basically meaningless social exchange like 'how are you'.

[Janstr]

I think people think they are giving you a boost, when they would be better saying nothing

[Mayadill in reply to Janstr]

Yes, context is everything, maybe even tone of voice. Could be meant as a compliment – despite your horrid disease, you look OK – or trying to cheer someone up – I know you feel terrible, but you look OK. Think I'd rather be told I look OK than I look like - ~I don't know, a thin silk garment that's been on fast spin!

[Chewy21]

Was the spinal curvature something you had before or after being diagnosed with polymyalgia? I have got curvature of the spine now which has got a lot worse this last year.

[Mayadill in reply to Chewy21]

Hi Chewy, Nothing to do with the PMR. What kind of curve have you got? Are you seeing an orthopod?

[Chewy21 in reply to Mayadill]

I've got a double curvature bottom and top. The top has just got a lot worse lately after I started getting terrible weakness in my neck after a taper of my steroids. I could barely hold my head up I kept telling doctors but they weren't listening and now it's affected my back. I wasn't referred to ortho yet because they think it is worse with the muscles at the moment. I am currently being tested for other muscles weakness related diseases by a neurologist. An EMG showed myopathy of several muscles.

[PMRpro Ambassador]

Invisible disability - been the subject of campaigns but they don't appear to have penetrated far yet ...

[Griggser]

I have used the reply “You say I look ok, well you don’t look stupid”.

It is frustrating especially when people keep on saying it and have that quizzical look that says hmm are they real sick🤔🤔

[Mayadill in reply to Griggser]

It's when it's accusatory, I guess, that really upsets people. Passive aggressive suggestion you're not really ill and trying to pull a fast one or get out of something the idiot thinks you 'ought to do'. Could be a boss or indeed the dear DWP. Of course you want to go to the party or come on the picnic. Possibly followed by 'it'll be good for you to get out'.

Especially if 3 months ago you were happy to do the thing. People who don't have chronic conditions don't I think at all understand something that can vary.

[Blearyeyed]

Perhaps they are coming from a recent appointment at the opticians and haven't received their new prescription specs yet! 😆😆😆In all seriousness though , I know exactly where you are coming from , if I had a penny for every time I have had to breath in and count ten after some stupid comment over the years , even with my closest friends or family, I could have retired to my own private island by now ....where I could happily avoid them.

Invisible illnesses suck!

[Kendrew]

I remember one of our more learned and experienced members retort when encountering this kind of comment. ("You look well")Her response was; "It's not my face that's ill!"

I still use this when appropriate, but obviously not in a confrontational manner.

I thought it was perfect. 😀

[anutycrixp]

What would be the preferred response? “You look f******g” awful “ or perhaps a silent stare or worse eyes averted with head turned ? Local people here greet and say “ yraoiright? With Rising inflection ,this works as it covers everything and can be used as a cheery greeting in passing.Useful.if anyone tells me that I look well I usually thank them for their kind observation, may ad that I feel ill or like s** t or something but delighted that I LOOK WELL !

[Mayadill in reply to anutycrixp]

Definitely that too.

[piglette]

I remember when I was a kid there was a song ‘My God You Do Look Queer’. I think Stanley Holloway sang it. The person in the song becomes really down as people keep saying how ill they look. At the end of the song someone comes up and says ‘My God you do look well’ and they cheer up!

[Sharitone]

On the other hand, my dear husband keeps telling me how awful I look, and I know which I prefer!

[Kendrew]

Just to add to my earlier response....

I know people think they're being kind when commenting on how well I look and most of the time it's harmless and taken in the spirit it was meant, but just occasionally, it feels like they're really saying something along the lines of; "Well what's actually wrong with you? You look so well! You don't look ill at all"..... the inference being that I'm either not unwell at the time, or I'm not unwell at all.

This can be completely demoralising, and incredibly upsetting, particularly when even after lengthy explanations to try and educate people about my condition, it still doesn't appear to bring about any significant enlightenment!

Some days I feel really rough, but I get out of bed, I have a shower, get dressed and go for a walk.

I may look 'okay' but it doesn't of course mean I feel okay.

Please don't misunderstand me.....I certainly don't want people telling me I look ill, but rather than telling me how well I look, I'd prefer them to simply ask; "How are you feeling today?"

That way, I have the option of choosing what information I'm prepared to disclose and how much information I'm prepared to disclose.

Constantly hearing how well I look when I'm actually feeling really unwell definitely doesn't help me, nor do I feel supported.

Others may feel differently, and of course I fully respect that.

It's a very personal opinion.

[cycli in reply to Kendrew]

Well expressed Kendrew. Hard to stay balanced when one would rather hit something except that would do more damage to oneself.

[Kendrew in reply to cycli]

You made me smile there.🙂

[cycli in reply to Kendrew]

a smile is a good thing Kendrew

[Gimme]

I think some people do look well on pred. I've bumped into people that I haven't seen for a while and they have said to me quite spontaneously how well I look. They have no idea that I am ill and am feeling totally poop. Also, when you are very poorly before taking medication and then start to get a bit better, people notice that you are looking better than you did, without being aware why. I find that most people that I know are pretty well meaning and most of them would offer help or be kind if they knew how unwell I feel most of the time, perhaps I have just been lucky.

[piglette in reply to Gimme]

I think I probably do look quite well. When people say I look well I reply it is the steroids that are doing it!

[Gimme in reply to piglette]

Good for you!

That's probably the kind of thing that I would say lol

[piglette in reply to Gimme]

It is quite a good reply I find, they then normally say ‘I must try them’!!

[artfingers]

The worst is when my close friend(s) ask "how are you feeling today?" then do not even LISTEN to the reply. I, too, have tried hard to explain this dang disease to those close to me, to no avail. I almost wish they could experience it themselves for a month or two. Well, that's not really true as I wouldn't wish it on anyone. True empathy is a difficult thing for some.

[piglette in reply to artfingers]

People are never really interested in how other people feel. We say ‘how are you today’ and expect people to say ‘fine’. We do not expect people to tell us.