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

*max*

I understand it must be really frustrating to live with a chronic illness, and see everyone else around seemingly having been dealt a much better hand. It's important to remember though, not to let yourself become your illness. From the point of view of "everyone else", it can become very old very quickly when someone cannot talk about anything else or drops it into every conversation, no matter how much you like them as a person. You start feeling like you can't say anything that will not sound like bragging in some way.

"Oh, I went to the zoo yesterday, it was great"
"Lucky you, I can't walk very far these days"

"We had a gorgeous sunset last night"
"Oh, you know with my medication I can't stay up after 9".

And so on, you get the gist.

I can't begin to know how hard it is to live with illness (touch wood!), and I'm very sorry for people who have to. But I think it's important to keep in mind not everyone is aware at all times what you are going through, or if they are, they might not want/be able to always talk about it or constantly remember to handle you with kids gloves. It's very draining having to watch what you say all the time in case it's misinterpreted as not caring or as bragging.

lostinrates

I agree with you max. This is tiresome for friends AND damaging for us too.

lostinrates

The important thing better days,

Never mind how you look

How are you feeling now, having aired it a bit?

meritaten

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.

having a 'chronic' illness is far different to having a 'terminal' illness. and having worked for a cancer charity for years and met literally hundreds of cancer patients - they all react in different ways. and we learned very quickly never to say 'oh, you are looking well!' as they could be literally on their last legs. but having a 'good' day despite being in great pain or distress.

I also met people who simply wouldn't appear to others without their wig, face nicely made up etc. you really cannot tell how someone is feeling by how they look.
I too, have had a chronic illness for years which has worsened over the last couple of years - yet its invisible and only those very very close to me know how much I am struggling. or how many painkillers I pop each day. so I can sympathise with the OP. but, would say, let it go hun - in the end its just a minor annoyance!:)

Better_Days

*max* wrote: »

I understand it must be really frustrating to live with a chronic illness, and see everyone else around seemingly having been dealt a much better hand. It's important to remember though, not to let yourself become your illness. From the point of view of "everyone else", it can become very old very quickly when someone cannot talk about anything else or drops it into every conversation, no matter how much you like them as a person. You start feeling like you can't say anything that will not sound like bragging in some way.

"Oh, I went to the zoo yesterday, it was great"
"Lucky you, I can't walk very far these days"

"We had a gorgeous sunset last night"
"Oh, you know with my medication I can't stay up after 9".

And so on, you get the gist.

I can't begin to know how hard it is to live with illness (touch wood!), and I'm very sorry for people who have to. But I think it's important to keep in mind not everyone is aware at all times what you are going through, or if they are, they might not want/be able to always talk about it or constantly remember to handle you with kids gloves. It's very draining having to watch what you say all the time in case it's misinterpreted as not caring or as bragging.

Yes, very good points *max*, and something that I need to be more aware of.

I try not to be defined by illness and the restrictions it brings, and to practice mindlfulness (a la Susan Jeffers End the Struggle and Dance with Life).

Most people are incredibly kind, and understanding, but the point that you bring up about being possibly seen as bragging is one I hadn't considered. I will think on this more as I wouldn't want a friend to think they have to watch what they say - I love to enjoy hearing about their good times - even if vicariously.

Timpu

I have to agree with those who say 'keep it quiet' (perhaps a bit late for OP). Most people won't understand a chronic illness and therefore aren't able to offer appropriate words.

I have a chronic illness which is also a hidden disability, I look terrible but by not discussing it with colleagues, friends etc. I can try and get on with life as normal. It works for me and I appreciate it may not work for all.

BrassicWoman

My response would vary depending on whether I wanted a conversation about my illness or something else.

Something else is usually more helpfully distracting.

Better_Days

lostinrates wrote: »

The important thing better days,

Never mind how you look

How are you feeling now, having aired it a bit?

Thanks LIR :A
I feel a lot better :j You have all been so kind about my little hissy fit :o:o

It has been so helpful to read all your comments and suggestions of better ways to cope. Things have been mentioned that I hadn't considered and a consensus has emerged that I can go forward with.

The chickens are clucking happily, there is a lovely golden sunlight reflecting off the leaves on the tree, and it's summer. Better Days are here again

lostinrates

That's good.

Often just airing it elsewhere is the ticket.

Armchair23

So many wise words in this thread.

Pain and distress can be just as bad whether it's physical or mental, visible or hidden.

Just try to be kind to yourself and those around you. Yes we all get things wrong so a simple sentence you might see as being critical or unkind is just a bunch of words. It may have meant to be a way of starting a conversation however ruddy inept !

It's tough to hear a stream of symptoms you just can't make better so if someone doesn't know how to respond it isn't that they don't care maybe they're just totally stuck for what to say.

Whatever your pain tonight, mental or physical I send a big hug and wish you well. X