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

Armchair23

I'd definitely go with the Mindfulness notion that you just can't control what other people say but you can have some control over how you react.

Like most things it's WAY easier said than done, but a really worthwhile way of thinking about things.

Mindfulness and meditation are great ways of managing pain and coping with stress, depression and really difficult circumstances.

Like anything else it doesn't come easily, you need to put in some time and effort. But it's worth a try if and when you feel up to it.

Not the best idea when you're at very low ebb, save it for a time when you feel able to spend a bit of time and effort.

shykins

just wanted to thank everyone on this thread for their insights, i too have an 'invisible' illness that wont get better and apparently look the picture of health even when i feel my worst. ironic huh!!

so slightly off topic (hope thats ok OP) h but what do you say to people who say oh you will feel better soon when actually no you wont? and much as i know they mean it in the nicest way i would rather they didnt ask or didnt comment cos i dont want my illness to be focussed on. does that make sense?

earthmother

As a Fibromyalgia/CFS sufferer, I also want to thank Better Days and all the posters here - if nothing else, it's nice to know I'm not the only one out there dealing with conundrums like this.

Shykins ... I have the same problem ... only last month, whilst hobbling through a waiting room at the local health centre (it was a good day, I didn't have to use my scooter, just my stick, and for once hadn't had to reschedule the appointment due to my health), I had some chap, probably in his 60s and with crutches, just call out as I walked past 'You're young ... you'll be better before me love'.

I just nodded with a small smile and walked on, but for a stranger to assume just because I'm younger than them that my problem can't be anything but minor and temporary really gets my goat, so to speak. And it's not the first time I've had comments like that, from friends and strangers.

If I'd been more confidant in myself, I'd have given him the truth (and have done with people I know) ... that no, I won't get better - what is now a quarter century of my symptoms just getting steadily worse and more debilitating pretty much proves that. But then I worry that it's just sounding like sour grapes or self pity, which it's not.

jewelly

I am being treated for cancer and am surprised myself at how well I look despite being on chemotherapy and feeling weak/nauseas,fatigued a lot of the time amongst other side effects. I've even put on weight (there's no justice!) when I would have expected the opposite.

So when people say I look well, I can understand where they are coming from. I often say "yes - weird isn't it, considering?". I've sometimes wished I did look more unwell, but that's just a silly thought based on a wish for more sympathy I think. Really I am thankful I don't look like a bag of bones ready for the knackers yard!

I think the OP was feeling over-sensitive, possibly based on the fact people still don't seem to 'get' ME and similar conditions.

Morglin

earthmother wrote: »

As a Fibromyalgia/CFS sufferer, I also want to thank Better Days and all the posters here - if nothing else, it's nice to know I'm not the only one out there dealing with conundrums like this.

Shykins ... I have the same problem ... only last month, whilst hobbling through a waiting room at the local health centre (it was a good day, I didn't have to use my scooter, just my stick, and for once hadn't had to reschedule the appointment due to my health), I had some chap, probably in his 60s and with crutches, just call out as I walked past 'You're young ... you'll be better before me love'.

I just nodded with a small smile and walked on, but for a stranger to assume just because I'm younger than them that my problem can't be anything but minor and temporary really gets my goat, so to speak. And it's not the first time I've had comments like that, from friends and strangers.

If I'd been more confidant in myself, I'd have given him the truth (and have done with people I know) ... that no, I won't get better - what is now a quarter century of my symptoms just getting steadily worse and more debilitating pretty much proves that. But then I worry that it's just sounding like sour grapes or self pity, which it's not.

Yeah, I have had a neurological condition, along with other things, for years, but, quite honestly, I like the fact that I play it down so much that strangers think I am on the road to recovery lol

Did have to laugh, at the hospital recently, having a 'wheelchair day', when a bloke told me he knew how I felt, because he had broken a bone in his ankle once and had used a wheelchair and crutches for a while.....:rotfl:

Love it - much better than someone patronising me (it happens, and it drives me nuts.....I am not 'brave', I just have to get on with it!:mad:)

Or pity...:wall:

Illness/disability belonging to one person is boring to others, so a laugh is the best tonic.:beer:

Lin

Mojisola

jewelly wrote: »

I am being treated for cancer and am surprised myself at how well I look despite being on chemotherapy and feeling weak/nauseas,fatigued a lot of the time amongst other side effects. I've even put on weight (there's no justice!) when I would have expected the opposite.

So when people say I look well, I can understand where they are coming from. I often say "yes - weird isn't it, considering?". I've sometimes wished I did look more unwell, but that's just a silly thought based on a wish for more sympathy I think. Really I am thankful I don't look like a bag of bones ready for the knackers yard!

I think the OP was feeling over-sensitive, possibly based on the fact people still don't seem to 'get' ME and similar conditions.

I might borrow that for some occasions.:)

I don't think you're looking for sympathy in wishing you look how you feel - it's wanting people to know what you're dealing with. It's similar to someone thinking you're a lot wealthier than you are - they judge how you live your life based on their perception and might think you're being mean or miserly when you've no choice but to be careful over every penny.

I think some people with ME and similar less understood (believed) conditions are more sensitive because of previous experiences where the "You look well" has been followed up with a crass remark.

Lily-Rose_3

I think MY favourite from some people is 'what have YOU got to be depressed about?!

madget_2

Mojisola wrote: »

I think some people with ME and similar less understood (believed) conditions are more sensitive because of previous experiences where the "You look well" has been followed up with a crass remark.

I agree. It must be extremely frustrating for ME sufferers to have some people disbelieve or play down that you do actually have an illness. That's bound to lead to oversensitivity on occasion.


In my case, most people either haven't heard of my disease or they mistake it for a completely different condition with a name that sounds a little bit similar. So I sometimes get people telling me, "Oh yes, I've got that too! Doesn't half make my neck feel sore." I usually can't be bothered to explain their mistake, so I smile politely and express my sympathy. Part of me finds it a bit funny, as Morglin says, because they'd have one hell of a shock if they really did have the same thing as me!


Like shykins, I don't want to focus (or for other people to focus) on my disease. That would just make life very depressing.


Mind you, I've had this damn thing for ever such a long time now and have pretty much come to terms with it. It's a lot harder, I think, for those who are still struggling with learning how to deal with a chronic disease or illness.

shykins

another problem i have is that people expect me to be able to do this or that and i cant, and as i look so well they just dont understand and think i am being whiny for saying no. i end up doing things i shouldnt for their sake and then feel worse

i too dont want to look awful but i dont want to tell everyone about it but sometimes need them to understand. which reading back makes no sense lol as i cant have it both ways

clarryd

I have fibromyalgia and arthritis (and a few more illnesses going on).

When people say to me "you are looking well today", I always say " that's good as I tried extra hard today to make myself look better as sometime it makes me feel a bit better".(Load or rubbish)

They don't really want to know you feel bad or in agony or it has taken you an hour to force yourself out of the house, so just thank them and tell them that's the look you are going for.