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

borkid

Going back to the original post Better days said some one who knew she was ill said it. Why don't they just ask 'how are you feeling today?'

borkid

lostinrates wrote: »

I'm currently five or six years past my predicted use by date. ( I think, I cannot actually, remember so I'm doubting that now) I'm entitled to have the odd rough day, no? . ( they got it wrong, turns out it was just a best before date)

Lost in rates it is not you and people like you that are the problem for me. I have met too many people who think their feeling 'rough' after a over indulgence in alcohol the night before is the same as people with chronic disabling illnesses, it is not.

lostinrates

borkid wrote: »

Going back to the original post Better days said some one who knew she was ill said it. Why don't they just ask 'how are you feeling today?'

Because people aren't going round in our bubble. They miss phrase things and make errors of judgements as we do. Maybe better days looked lovely. As we know, these invisible illnesses can have us looking well.

They said something that was not a slight. If it was said bitingly , as really is possible, then if I were better days I'd stop confiding in them any way and avoid them, because they'd be horrid people. If not, then I'd feel the sensitivity were my issue.

Its true chronic health ribs us of more than 'health' but often of dignity, emotional confidence and security. This is, IMO, where we win or lose to it. I made significant losses to my health this year in emotional terms and I saw just how WoRSE that was for me physically.

Better_Days

MrsAtobe wrote: »

The last time someone said that to me, I just grinned at them and said 'thanks, but it's all down to decent make up'. Humour goes a long way for me in such situations. I have been in constant pain now for over four years following an accident, I have a chronic bowel condition to contend with too. I have seen a letter from my gastro consultant stating that he thought I had ME as well, given my fatigue levels.

A member of the family has ME, and has recently been told about a private clinic in London run by doctors who've all been diagnosed with ME, I hope if decides to see them that they can bring him some relief.

Ohh can you give me some make up tips? I'm pants at make up Got a drawer full of the stuff that I try occasionally then give up as it ends up an uneven mess. Then I do look ill :rotfl::rotfl:

Chronic pain is no joke, especially when it impinges on sleep. And with ME too, sleep disturbance is difficult to manage. I have found pacing, good quality quiet rest during the day and avoidance of stress to be the most effective in managing ME, but having other health conditions to take account of too makes things a lot harder. And of course, different strategies work differently depending on the person. Sorry to hear you are so poorly:(:(:(

lostinrates

borkid wrote: »

Lost in rates it is not you and people like you that are the problem for me. I have met too many people who think their feeling 'rough' after a over indulgence in alcohol the night before is the same as people with chronic disabling illnesses, it is not.

You said you'd never come across people using the term 'rough'. Now you have. Edited! '

dandelionclock30

If you were really properly ill you wouldnt giving a flying foxglove what people thought. I've known people who were dying and the last thing they were bothered about was what other people thought about how they looked. They were way passed all that.

lostinrates

dandelionclock30 wrote: »

If you were really properly ill you wouldnt giving a flying foxglove what people thought. I've known people who were dying and the last thing they were bothered about was what other people thought about how they looked. They were way passed all that.

Actually I don't think that's true either.


Firstly chronic does not equal critical, so we're not always ( and for some never, or rarely) on death's door.

Also, despite my complicated situation, I have found the vanity aspects by far the hardest to deal with. Not the pain, but the impact on lifestyle, energy and appearance and fitness. I always say to my doctors, bxgger the pain, give me energy and my figure back please. Not much point hanging round the place to sleep all the time. Stay in bed maybe, but not sleeping .

How people react is different. Pain really is not the big deal for me ( even though I have significant pain levels). For others that's the crippling factor. If I could continue as normal to the outside world always I think I'd me very much more content.

CH27

dandelionclock30 wrote: »

If you were really properly ill you wouldnt giving a flying foxglove what people thought. I've known people who were dying and the last thing they were bothered about was what other people thought about how they looked. They were way passed all that.

:eek:
Why do cancer patients wear wigs & get eyebrows tattoo'd on?

We are talking chronic illness here which isn't necessarily terminal.

Mojisola

dandelionclock30 wrote: »

If you were really properly ill you wouldnt giving a flying foxglove what people thought. I've known people who were dying and the last thing they were bothered about was what other people thought about how they looked. They were way passed all that.

So only people near death's door are "properly ill"?

ska_lover

OP maybe folk think you might not want to discuss your illness and probably have enough thinking / dealing with it, and may not want to discuss it repeatedly?

I am sure they mean well, and that they were genuine that you looked well - am sure they didn't assume anything by a passing nicety

Hope you feel better soon