'You look well' - invisible illness - how to respond when you feel ghastly?

Lily-Rose_3

Better_Days wrote: »

Lily Rose's suggestion of
is lovely as it has integrity and kindness wrapped up in a short sentence. Thank you.

You're welcome...

:happyhear

Better_Days

Armchair23 wrote: »

So many wise words in this thread.

Pain and distress can be just as bad whether it's physical or mental, visible or hidden.

Just try to be kind to yourself and those around you. Yes we all get things wrong so a simple sentence you might see as being critical or unkind is just a bunch of words. It may have meant to be a way of starting a conversation however ruddy inept !

It's tough to hear a stream of symptoms you just can't make better so if someone doesn't know how to respond it isn't that they don't care maybe they're just totally stuck for what to say.

Whatever your pain tonight, mental or physical I send a big hug and wish you well. X

Thank you :A. Turns out cyber hugs are very theraputic :):)

Better_Days

meritaten wrote: »

having a 'chronic' illness is far different to having a 'terminal' illness. and having worked for a cancer charity for years and met literally hundreds of cancer patients - they all react in different ways. and we learned very quickly never to say 'oh, you are looking well!' as they could be literally on their last legs. but having a 'good' day despite being in great pain or distress.

I also met people who simply wouldn't appear to others without their wig, face nicely made up etc. you really cannot tell how someone is feeling by how they look.
I too, have had a chronic illness for years which has worsened over the last couple of years - yet its invisible and only those very very close to me know how much I am struggling. or how many painkillers I pop each day. so I can sympathise with the OP. but, would say, let it go hun - in the end its just a minor annoyance!:)

Thank you for sharing your experience. A very interesting insight into chronic and also sadly terminal illness and how people cope.

So sorry to hear you are struggling and that you are in so much pain. I do hope that the painkillers at least take the edge off so you can sleep, have some quality of life and don't have unmanagable side effects.

Thank you for the advice - you are right - I need to let it go......in fact thanks to all the kind words....its gone!

Carmina-Piranha_2

I find that some people say "you're looking well" to everyone they meet, because it's a social nicety.

One person in particular says it as if she really means it, and it makes me wonder if I was ill last time I saw her!

If you think these people are nice, they probably aren't saying it in a 'you don't look ill so you probably aren't' sort of way. And maybe you do look well? Well doesn't necessarily mean healthy, it might mean you are dressed nicely, or your hair looks good

meritaten

Better_Days wrote: »

Thank you for sharing your experience. A very interesting insight into chronic and also sadly terminal illness and how people cope.

So sorry to hear you are struggling and that you are in so much pain. I do hope that the painkillers at least take the edge off so you can sleep, have some quality of life and don't have unmanagable side effects.

Thank you for the advice - you are right - I need to let it go......in fact thanks to all the kind words....its gone!

thank you for your sympathy - you have mine too! another thing we learned as volunteers was never to say anything along the lines of..... 'lots of people worse off than you'! Yeah, so what! we feel how we feel! and if we feel at a very low ebb and are in pain etc - it just doesn't really help that someone else is 'worse off'!
I do what I do - get through the day as best I can! yesterday has gone and tomorrow COULD be better! (and sometimes is!)

jetplane

OP I have been guilty of saying this to my friend with ME, I would normally say it like 'you look well today' and most times it is because she is looking well compared to how she normally does. Now that doesn't mean she is feeling well it might be because she has had a hair cut or has a bit of a tan or wearing a bit of make up. She sometimes replies 'thanks' and sometimes 'I wish I felt well'. I have to admit she seems to respond more when I say 'oh you look really tired today'.

Most times I cant say anything right at all, no matter what I have read up on the illness, no matter what article on ME I ask her opinion on, no matter how I try to empathise she assures me that I can never understand, there is always a reason why any remedies won't improve her quality of life and there are times when she will make me feel guilty for not being ill and taking enjoyment in something.

I do wonder whether it's because she had to battle so long and hard for a diagnosis or that so many people don't believe her that she gets frustrated. Perhaps 'you look well' translates to 'I don't believe you are poorly' to some people?

meritaten

jetplane wrote: »

OP I have been guilty of saying this to my friend with ME, I would normally say it like 'you look well today' and most times it is because she is looking well compared to how she normally does. Now that doesn't mean she is feeling well it might be because she has had a hair cut or has a bit of a tan or wearing a bit of make up. She sometimes replies 'thanks' and sometimes 'I wish I felt well'. I have to admit she seems to respond more when I say 'oh you look really tired today'.

Most times I cant say anything right at all, no matter what I have read up on the illness, no matter what article on ME I ask her opinion on, no matter how I try to empathise she assures me that I can never understand, there is always a reason why any remedies won't improve her quality of life and there are times when she will make me feel guilty for not being ill and taking enjoyment in something.

I do wonder whether it's because she had to battle so long and hard for a diagnosis or that so many people don't believe her that she gets frustrated. Perhaps 'you look well' translates to 'I don't believe you are poorly' to some people?

you could be right as some very ill people take umbrage at 'you look well'! for many reasons. not just because it translates to 'you don't look poorly'.
you are ill, you are aware you look awful, and some well meaning person says, 'you look well today'! you think '!!!!!! - you blind or a liar'?
or 'don't bloody patronise me'!
or 'you think THIS is looking well'?
or 'rofl - you should have seen me yesterday'!

when you feel awful and know you look awful - someone telling you that you look well, it sort of 'invalidates' how you FEEL.

I know people mean well - we all do - but sometimes we don't feel like being 'kind' and 'tolerant'.

Isnt it better just to ask them how they feel today?

Mojisola

jetplane wrote: »

Most times I cant say anything right at all, no matter what I have read up on the illness, no matter what article on ME I ask her opinion on, no matter how I try to empathise she assures me that I can never understand, there is always a reason why any remedies won't improve her quality of life and there are times when she will make me feel guilty for not being ill and taking enjoyment in something.

I think a lot of us will know someone with ME/arthritis/heart problems/any other chronic illness who is like this. It's a personality type and their company can be very wearing!

jetplane

meritaten wrote: »

Isnt it better just to ask them how they feel today?

That's a whole new thread :rotfl:
Do people really want to know how someone feels today? Or are they just being polite :eek:

Takeaway_Addict

Better_Days wrote: »

This has really been getting to me recently (possibly because my symptoms are worse at present)

How do those of you unlucky enough to have a chronic disabling illness which is 'invisible' respond when people tell you 'you look well'? Or when you are asked about a family member in a similar situation?

I got quite cross with someone yesterday, who knows I am very poorly, yet insisted that I 'look well', and 'wouldn't lie if it wasn't true'.

It feels as when people say this they are implying all is OK because I look alright - or they hope to make me feel better by telling me I look OK.

Agghhhh :eek::eek::eek:

So has anyone got suggestions for responses that are not 'put downs' (to people who don't mean any harm) but on the other hand let me express that I'm not well, there's no treatment, no NHS care, and the situation isn't likely to improve anytime soon.

So really it's your issue, not the other persons...

To further elaborate, we as a society shouldn't be afraid to say positive things, the country is going far to much towards the cautious side in afraid of upsetting someone it actually prevents alot of good.

You talk about mindfulness but surely if you had been mindful you would have appreciated the persons kind thoughts rather than get annoyed at them for not understanding every nuance of your illness.

I wish you well.