How often we are told ," but you look so well, how can you be sick ?"

[Twinkly]

Maybe it's because we make such an effort ,before we get ready to go out in public !! I know I do !!

[Paul42]

Its often human nature to say someone looks well even if they don't. In fairness if you meet someone and they say you look awful, or like 'death warmed up', or so on and so forth...well thats not the best either.

I know what you mean though, even when i was admitted with varices and had to have endoscopies and liver biopsy the consultant apologised because i looked a 'picture of health'!!, mind you after 5 days in hospital that put paid to that lol

[Twinkly in reply to Paul42]

I love your humour ,,it's great tho !

[Helpatlast]

Yes indeed Twinkly it is a particular bug bear of mine I must admit especially when it comes from friends who KNOW what's wrong with you - it can be disheartening BUT I do have a little thought process that helps me when it is said as I think actually this has been said with good intent not with malice - and it's true most who say mean well they just haven't been there - hence the advantage of this site

[Aime]

I know what you mean, it can be so annoying when you are feeling absolute crap! I do, as you do, try and keep smiling and trying not to be obvious as I drag my feet and my body because of fatigue. On a bad day I would probably burst into tears though if someone told me I look awful and I have a very bad habit of saying I'm fine when I'm not! One thing I have learned, probably obvious to everyone else is that your thoughts really govern the way you are feeling. So I try to change to happier thoughts then I do feel a bit better. Take care Aime xx

[Cdseiter]

Haha... It happens almost every day. Most times I ignore it or say ...yeah, I know weird, right. Every now and then I say yep...well things aren't always what they seem. I know they mean well but it does grate on ones nerves.

[Hidden]

My boss came to give me a welfare visit. I swear for the first fifteen minutes he kept saying how great I look. Now they are going to sack me. Trust me I looked totally sick. Now they make me feel sick. Patronising beeps. I worked in their dangerous hellhole for 14 years. Not even a gold watch.

[Twinkly in reply to Hidden]

You don't need a gold watch honey ...just true appreciation ,you have that from us ,believe me !!

[Borage in reply to Hidden]

By the way, have you a union rep?

My Dad got someone an apology, flowers and a lump sum for such unfair treatment.

[Hidden in reply to Borage]

Hi Borage,

Yes I have a great union rep. He is going to the panel on my behalf. I also have a solicitor for criminal injuries. It's not the person who assaulted me. It's my colleagues who did not respond to my high level alarm. We are used to being injured. However, staff usually respond quickly. There were also two staff present who just watched. It wasn't the worst assault but it seems to have been the final straw. Something snapped inside me.

[josiede]

This is so true but it can be a massive disadvantage when claiming benefits or persuading docs ,family,friends etc how bad you are feeling. Maybe a t-shirt with this printed on it would help, I know it made me laugh.

[IainF]

Try asking someone on the Tube to give up the priority seat when you are feeling really bad, usually met with complete indifference as we don't look ill. I seriously believe that London Underground should give all sufferers of chronic illness a badge so that we can guilt people to let us sit down, after all pregnant women get one and they (usually) chose to be in their condition - not fair at all!

[Stevesmum42]

Love that poster...just says it all. Many people have unseen problems mental or physical , we do assume all is well by appearances. I must say I have told people they look well although I know otherwise , just to try to make them feel better, so I can now see both points of view. Sandy xx

[Twinkly]

Well lets face it ,,no one wants to hear how ill they look ,do they ? But some days you just need to hear ,," how are you ?" .....and they are guenuinely interested ,, I like .WOW,,,you don't look that age ..looking good granny !!!

[lizzziep]

I do tend to say, in answer to the question how are you - that I'm fine! I do look well, mostly due to clever use of make up!! Often feel very tired, but keep going - we must never give up!!! (even if we feel like going to bed and curling up in a ball - although due arthritis I can't do that!) I am lucky that I am now retired so don't have to get though a work day, one of the few advantages of getting old!

[beetle]

We joke about it on the day bed unit at the hospital I regularly attend. We always ask each other how are you and the reply is always "good" or "I'm fine" and we all laugh about it because none of us would be there if we really were fine! But at the end of the day, do we really want to be told we look awful and the more time we vocalise the fact that we feel awful it actually reinforces the negative and we begin to feel worse. So the 'fake it til you make it' slogan is sometimes the best. The more time we say we feel good, the better we feel! I have rosacea so often have rosy cheeks even when quite anaemic and look well most of the time. With MF, as many folk know, I am far from well but actually I prefer to look well and not dwell on the opposite. When we need a bit of sympathy we can usually get it from the people close to us who really know what is going on or we can get it in spades from the lovely people on this site who truly understand what we are going through - just my rambling thoughts for the day! I'm fine today, by the way!

[Borage]

What a perfect illustration. When anyone asks how I am I usually say "I'm OK."

Who wants to be defined by their illness?

Do you remember the old Stanley Holloway musical hall song, "My Word, don't you look queer?" The more he was told he looked ill, the worse he felt. It is on YouTube.

You could always point out that at any second you could start to pour blood from all your mucous membrane. Go into gory detail, let your imagination run to gothic horror. And this you bravely live with. It is such a rare complication, I have never heard of a case, and is not really as it serious as it sounds, but it is well for them to be prepared!

[Hidden]

I remember being told a while ago I was looking great. I smiled, thanked the lady and said the drugs must be doing their job. I actually felt like crawling into a hole and sleeping and had horrible aches all over my body. That was a Sunday and I was put off work by the Wednesday of that week for a couple of months with severe anaemia. Amazing how you can fool people when you aren't well. I even fooled myself. I was cross with myself because I was so tired all the time. I thought I was being lazy and was still trying to force myself to work on the very day I was put off. I remember clinging to the wall thinking, 'It's just a few steps to the car.' Glad I didn't persevere with that one!

It really only bothers me when someone close to me completely dismisses me when I say I am feeling fatigued that day or on how they say those words, 'But you don't look sick.' I have heard it used about other people as a sort of criticism. 'Wish I looked that well when I am sick.' sort of thing. I don't mind setting people straight in these circumstances.

Mostly people are positive and supportive. My friends know I put a lot of effort into keeping myself going and being positivie. I would really rather not be known as the person with whatever illness and I really do not like wearing these stupid T-shirts covered in logos telling the world about whatever medical condition you have. I have no problem with educating people or answering their questions if they ask and are genuinely interested but I would rather find another focus for my existence - for as long as my health allows, of course.

[chelsea1]

Hi Twinkly!

I'm told sooooo often how well I look, almost to my detriment! I had 8 weeks off work earlier this year and went back as I felt so guilty, even though I still felt unwell that week (was fine while I was off!!). Unfortunately, that weekend I ended up in hospital, even though "I looked quite well" (or so my colleagues told me). I'm off again and not doing too bad with the rest but I understand exactly what you're saying! I have always made an effort to look as good as I possibly can as it makes me feel better, but this year I have found it more of a struggle to keep up the 'pretence'. I must say though that I don't think I will ever give up on my appearance, as long as I have life but I do tell people don't always go by how someone might look, but go by how they say they are feeling.

[Shelly1960]

so true

[Hidden]

When my line manager was trying to think of fibromyalga. He said "you know that imaginary illness with imagined pain". I said the morphine they take for the pain must be imaginary too. Nobody wants to be defined by their illness. But some respect would be good.