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

Better_Days

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.

haras_nosirrah

You may be being quite sensitive which is understandable but your friends mean well

What would you rather they say?

savingmummy

If its someone who don`t know about your illness I`d explain `I may look ok but I have xxxxx and it makes me feel xxxxxxxx.


To those who know of your illness I`d ask them to read up on the illness to get a better understanding!


Unfortunately a lot of people have little understanding, its not a case of being ignorant on purpose, its basically them not understanding fully or realising how this would effect you.

stir_crazy

To be honest, it sounds like something that I would say to someone if I was trying to give someone a bit of positive thought. I certainly wouldnt say it to be flippant about an illness.

You could always reply by telling them that you've been feeling worse at the moment because your symptoms have been worse than usual.

marisco_2

My take on this is that your friends are trying to lift your spirits, by complementing your outward appearance, in the belief that everyone likes to feel good about themselves. I don't think they are purposefully being dismissive of all you are suffering and coping with.

Could you open up to them by saying something like, 'I wish I felt as well as you think I look', and take the conversation from there. Good friends should want to listen and offer a shoulder to lean on.

borkid

Hi Better days

I know exactly how you feel, my daughter has ME. One day we were out and met someone she knew who said exactly the same thing. My response 'you only see her when she's having a good day as when she having a bad day she's too ill to come out'. She had rested for several days before hand to be able to do that 2 hour outing.

I did take her out once when she became ill when we were out, a couple of people we were with were about to dial 999 as she looked so ill. They were horrified when I explained that this was her normal state of affairs and they usually only saw her on good days.

Re response just say 'I'm lucky today I'm having a good day so I can do .......'

Better_Days

The thing is I have explained about my illness to both of the people who said it to me recently. I just want to respond without coming across as defensive, but at the same time reminding them that I am too ill to leave the house most of the time.

haras_nosirrah - if they are interested I would like them to ask how I am. If they are not interested don't say anything at all!!

You are right, I am sensitive about it, but trying to find a way forward.

stir_crazy - I can see what you mean. For me though there is a fine line between positive (mindfulness I know greatly affects how life is experienced) and the implication that I hear from some people that I can 'think myself well'. Put another way, if you are in bed with flu - it doesn't help much if a friend rocks up and says 'you look well'.

lostinrates

I don't tend to discuss my health much in real life.

I am aware I might tell people with depression or other invisible illnesses they look well too. When people say 'you look well' I smile and say ' thank you, you look great, how is 'x'' or ' I love those shoes' or whatever.

It maybe I look well to them, it may be they are making an insincere nicety. In either case, it doesn't impact on how well I am or not.

tomtontom

Please don't have a go at someone that is trying to be kind!

I also have an invisible illness, but if someone is kind enough to tell me I look well then I simply say thank you. It is a compliment, they're not trying to make out there is nothing wrong with you, and chances are they're not wanting war and peace on what is actually wrong - they are just being nice

Better_Days

Thanks marisco. You are right, it isn't malicious at all, and I know people are trying to help. I like the suggested respons 'I wish I felt as well as you think I look'. I don't want to bore people with my illness, but I feel the devastating impact on my life can't go unacknowledged.

borkid very sorry to hear your daughter has ME. Me too! The support and understanding of family is so important. Unfortunately the illness is so poorly understood and perceived, even by healthcare professionals. My GP said to me once that she was horrified when she read on my DLA application how my functioning was affected. She didn't disbelieve me, she just had no idea.

My husband says exactly the same thing as you - people only see me when I am well enough to get out of bed, and rarely out of the house. They don't see all the rest that is needed and the excerbation of symptoms following minimal activity.

SavingPennies_2

I don't like to discuss personal issues and I don't like fuss or sympathy either so I would prefer people to tell me I look well - even if I don't feel it.

Unless your illness is causing an problem that other people can help with, such as you arent able to do certain things at work and you need some understanding/asistance from your manager, then I don't see why it needs to be talked about at all. If people politely (or genuinely) say you look well, just say thanks and move on. They are trying to be nice so I don't think it's fair to get cross with them, although I understand it can be hard to contain emotions sometimes.