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

mountainofdebt

I have to say that those posters who have suggested that this sort of comment was made as a compliment follow my way of thinking - I certainly don't think they would mean that I was faking the illness if it was said to me.

Obviously a response along the lines of 'must be a better actress than I thought' or 'today is one of my good days' would be adequete

Takeaway_Addict

jaylee3 wrote: »

We will have to agree to differ. I think you're coming across as a bit insensitive tbh, and I don't think you're aware how mental illnesses and chronic illnesses affect people, and how they feel from day to day.

She can't help the way she is, and the suggestion that she is at fault is not helping tbh. And I don't see her 'having a go at anyone,' she is just asking for advice on how to deal with people saying 'you look great' when she feels dreadful, and especially when they KNOW she has M.E.

I am sure they mean no harm, but none of this is her fault.

I meant she had a go at her friend.

We will have to disagree and as someone that does have what could be defined as an incurable (though I disagree) mental health issue I am aware of how debilitating it can be but I am also aware that I am the only person that can overcome it and I am the only person that can control my reactions to other peoples comments regarding it.

Starrystarrynight

I can absolutely empatise with you, OP.

At different times, I can react differently to being told I look well. I usually just respond with something like 'good make up' or 'thanks, though I don't feel good' and often I find it hard to tell if someone is being genuine or sarky. I find it tough to accept the odd comment when I also know I have to rely on the help of others so much.

I've saved the link you gave & will read it when my concentration is a bit better.


I hope you can find a way through the comments of others. X

Mojisola

mountainofdebt wrote: »

I have to say that those posters who have suggested that this sort of comment was made as a compliment follow my way of thinking - I certainly don't think they would mean that I was faking the illness if it was said to me.

Then you've probably never been on the receiving end of the follow-up comments - "I always thought if you made the effort to get out of the house, you'd feel better", "Make sure you keep this up now and you'll soon be back at work", and so on.

Obviously a response along the lines of 'must be a better actress than I thought' or 'today is one of my good days' would be adequete

I usually reply with a "Thanks" now because if the comment is kindly meant, I'll take it that way and if it wasn't, it isn't worth my energy to try to convince the person that I am ill.

Indie_Kid

I normally just say thanks. Partly because I don't want to bore my friends with how I am really feeling, because for the most part, they probably wouldn't understand.

lostinrates

Mojisola wrote: »

I usually reply with a "Thanks" now because if the comment is kindly meant, I'll take it that way and if it wasn't, it isn't worth my energy to try to convince the person that I am ill.

I get this, but also, its not far a mental leap to convince ourselves that we're write offs when we might not always be. Its worth conserving the energy and not getting into dialogue, I agree, but its also worth fighting a little on days we can and not giving up hope on days we can.

I'm convinced its giving up hope that's taken wind out of my sails and the presence of 'fighting spirit' that's kept me going when really things are worse. Getting caught up in dialogue about it is far more draining than anything else IMO. Talking about it focuses me on what's wrong. I'm planning another 'start from base' now, to try and 'gather some battle force' back. Not having talked about it to people in real life means there is no expectation, no one to let down, nothing, but I can set my OWN mind and resource to it! and if I do well! I do well, if I don't I don't.



Btw, I think that better days was amazing to take so many opinions into consideration and move forward SO QUICKLY , that wind out of you sails moment can take some time to bounce back from! depletion is terribly hard to get any momentum to move forward from! emotionally, physically, in anyway.

madget_2

It actually makes me feel better if someone genuinely thinks I'm looking well or doesn't realise that there's anything wrong with me at all. I don't want to look ill.


During the first few years after my diagnosis (when I was in my early 20s), I had to cope with things like my macho father-in-law going home because he burst into tears when he saw how ill I was. Nurses would come and sit with me, also in tears, in order to try to comfort me. It all made me feel worse, guilty even! I didn't want to be responsible for upsetting anyone else, on top of the pain, paralysis and stuff I was going through myself.


Now, unless I'm going through a bad flare-up, people who don't know me well don't even realise that there's anything wrong. If ever they find out, they're shocked and tell me that they can't believe it because I (usually) look so well.


I much prefer the way things are now. I don't want to be told that I look like crap. I don't want to be reminded how ill I am. I just want to get on with my life as best I can. I love the compliments!


I can sympathise with the OP, though. There are times when I just think it all seems so unfair and wonder why did this happen to me. I've found that the best way to get through life, though, is to try to be as happy as possible (not always easy!) - and that includes taking any genuine compliments that people are kind enough to bestow upon me.


I hope that this thread has helped you to understand both sides now, OP: how difficult it can be for non-sufferers to know the right thing to say. They can't fully understand what those of us with chronic diseases or illnesses have to cope with on a daily basis, it's true, but most people are just trying to be nice.


In any case, like I say, OP, you do have my sympathy and kind thoughts.

madget_2

lostinrates wrote: »

I get this, but also, its not far a mental leap to convince ourselves that we're write offs when we might not always be. Its worth conserving the energy and not getting into dialogue, I agree, but its also worth fighting a little on days we can and not giving up hope on days we can.

I'm convinced its giving up hope that's taken wind out of my sails and the presence of 'fighting spirit' that's kept me going when really things are worse. Getting caught up in dialogue about it is far more draining than anything else IMO. Talking about it focuses me on what's wrong. I'm planning another 'start from base' now, to try and 'gather some battle force' back. Not having talked about it to people in real life means there is no expectation, no one to let down, nothing, but I can set my OWN mind and resource to it! and if I do well! I do well, if I don't I don't.

Yes! I think of my disease as a battle to be fought and, although I know that I can't win the ultimate victory, I will try my hardest to grab it by the balls and give it a damn good beating!

Morglin

I was predicted, by medics, to be dead by 2000, here I am, still fighting and stroppy, and if someone wants to tell me I look well, then bring it on.....:T

I don't want to talk about or discuss my problems with anyone, other than medics, and I don't need any sympathy, so people thinking I look well is a bonus!

Lin

[Deleted User]

I have an unpredictable heart arrhythmia which means I have to call for an ambulance even though I look fine. So far that's always been while I'm at home, but I can see what's coming when it happens in public:

"You look alright to me, what are you calling an ambulance for, they're for emergencies"

I nearly found out last Saturday when it kicked off while I was on holiday, but fortunately it sorted itself out before I had to go downstairs for breakfast.