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

borkid

Brighton_belle wrote: »

Well, I think 'feeling rough' covers all sorts of wretched illnesses and life situations - and LIR knows plenty about feeling very poorly indeed.

I did say LIR probably didn't mean it to sound as I took it but I have met too many people who have said they feel rough and equated it with ME when I know that often they feel rough because they had too much to drink the night before ( they have told me all about their various illnesses as well). I have several friends and have met people with very serious debilitating illnesses and as far as I can remember they have never said they feel rough.

lostinrates

Edited......

Better_Days

borkid wrote: »

Sorry I'm sure you didn't mean it to come out this way but feeling rough is no way comparable to how one feels with ME ( I only mention ME because I have direct knowledge of it and I am sure there are lots of other illnesses where this will apply). I used to get so annoyed with people ( not literally) who said 'oh I get tired as well' when I mentioned my daughter had ME. I even had an ex nurse say similar and actually said 'if we had the same benefits system as the USA then there would be fewer cases of ME in UK':eek:

Yes, I had a nurse at the breast clinic last year remark that many PWME were in fact malingering. I tried to explain to another nurse how exhausted I get and she just said 'oh we all feel like that sometimes' - I felt like saying 'but not every bloody day for 15 years' but I restrained myself

Torry Quine - yes I like that 'thank you, this is one of my good days'. Short and affirmative.

dandelionclock30

Its better than saying God you look rough or you look like sXXXe.
All you have to say is actually I'm not too good.
However, in my experience people who are desperatley ill tend not to look a million dollars.

MrsAtobe

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.

Mojisola

dandelionclock30 wrote: »

However, in my experience people who are desperatley ill tend not to look a million dollars.

And it's exactly because quite a few people are thinking this when they say "You look well" that it can provoke a sharp response.:(

Better_Days

dandelionclock30 wrote: »

Its better than saying God you look rough or you look like sXXXe.
All you have to say is actually I'm not too good.
However, in my experience people who are desperatley ill tend not to look a million dollars.

But that's the problem. Someone can be very ill, but not look too bad.

I agree that its not nice to be told you're looking dreadful. But on the other side of the coin it is can be frustrating/upsetting/annoying to be told you look well when you are very unwell, functioning at 15% of normal.

CH27

Better_Days wrote: »

But that's the problem. Someone can be very ill, but not look too bad.

I agree that its not nice to be told you're looking dreadful. But on the other side of the coin it is can be frustrating/upsetting/annoying to be told you look well when you are very unwell, functioning at 15% of normal.

People really cannot win with whatever they say.

dandelionclock30

Well its not a major thing all you need to say is that actually your not very well. I'd be pleased that I didnt look ill because obviously you dont want to look poorly.
Concentrate instead on getting well not upon what others think.

Better_Days

CH27 wrote: »

People really cannot win with whatever they say.

Yes, this was the point LIR was making, it is difficult from both sides.