Anyone else struggle with the well meaning 'you look really well' comment?!

[Tinksie]

I just feel like the underlying message is 'you can't be that unwell because you don't look it'. Really struggling at the moment and just feel alone with this illness.

[steadilymovingforward]

I know I really struggle with it too. So sorry you feel alone, but glad you have opened up and in that way you won't go it alone now. You've got the support from everyone here. Hope it helps to know that we all know and appreciate how much you are suffering no matter how you look! It's horrible when you feel terrible and you struggle to get any empathy from people who know you.

Maybe you could tell them about the spoon theory?

Xxx

[gabs in reply to steadilymovingforward]

Hi - I am probably being very slow, but what is the spoon theory? Gabs.

[steadilymovingforward in reply to gabs]

Sorry taken me so long to get back...if you google it It's a theory a lupus sufferer came up with to help none sufferers understand what we're going through...pretty good xx

[lillyanne]

I get this all the time Tinksie and its hard to cope with because I always feel that if I say anything to explain my illness, that people think I'm moaning or even worse, exaggerating. The other thing I hate is if I'm on a bus for instance, and I don't give up my seat for an older person, people look at me as if I'm the worse person in the world but the fact is, I can't stand up for two minutes without pain, no matter how 'well' I look. I feel very alone sometimes because people just don't understand the effect this illness has on a person, and its hard to explain yourself all the time. The only way to get people to understand is publicity and education about this illness, I think. Chin up and hugs and remember, you're not on your own.xxxxxxxxx

[juneybells]

I know just how you're feeling believe me you are not alone, we all understand how you feel. Just the other day my mother in law was complaining about a pain in her knee and said no one understands how much she was suffering, couldn't help but laugh, I've been in pain on ad off for 30 years and all she ever says to me is well you look alright! Try not to get too upset when people make stupid comments its their ignorance and not your illness. Hope you feel better soon, at least for a little while x

[lizp28 in reply to juneybells]

Had to smile when I read your post Juney! My mother is exactly the same..doesn't want to acknowledge that there is actually anything wrong with me! The fact that she has reached 85 without a day of illness doesn't seem to enter her head or the fact that others have major things to deal with.

Glad there are others who get the same reaction although it is very difficult not to react yourself with such daft comments! Have a super day ..Liz x

[ShannonB]

I totally agree with you and the others. It's often the times I feel worst that I look fine, and people just don't understand. Hang in there, you are not alone.

[Hidden]

Oh yes Tinksie. I had my first Rheumatology appointment on Monday. I had told a colleague who I am working closely with over the next few weeks about it because I was concerned that I might be a bit 'flaky' and not performing well. Naturally she asked me how it went. I told her that my suspicions had been confirmed - Sjorgens/SLE - and that I will be starting treatment. Her response,'well you look well'. And she is a nurse like me! So even those who we might expect to have some empathy can't because Lupus is such a sneeky and evasive little bugger to those who are not cohabiting with it. I spent yesterday feeling very lost and isolated. I do understand exactly how you feel xxx

[Muscatmandy]

Me too-in a weird way it's like a kick in the teeth! I try really hard to live a "normal" life which is a daily battle and then someone says that and I feel like crumpling up in a heap. Why don't I feel proud when people say it?!!

[juneybells]

Tinksie you can see from the comments above you are definitely not alone, when it gets too much just rant on here we will all understand and try to support you. keep smiling believe me it helps xxxx

[SNOWWHITESHELLY]

You are not alone, as you can see from all the comments so far! People just don't get it do they. I get so wound up some days listening to people complain they have an achey limp or something else when I struggle to cope every day. It's just unfair isn't it. All we can do is fight to remain positive and keep well. Sending all Lupies a massive hug today xx

[Barnclown]

I've had nearly 60 years of these painful comments, and have become hardened to them, mostly...but they still hurt me deep down

So, now I try to tough this out...if i'm feeling up to it, i grin at whoever says this kinda thing, and reply with a laugh:

and you don't look stupid, haha!

Then I tell them:

don't worry, i'm glad you think i look really well. Haha, cause this means I've got really good at the concealing make up!

And then i tell them about that fab lupus poster with butterfly & the words:

I DO NOT LOOK SICK

AND YOU DO NOT LOOK STUPID

LOOKS CAN BE DECEIVING

I think someone here on forum posted it here some time ago

Thank goodness for this forum & you guys!

XO

[gabs in reply to Barnclown]

Hi Barndown. I am very much in sympathy with all the posts mentioning looking good and your own comment about the poster. I think the best one I have seen is the iceberg, pointing out that people can only see the tip but that underneath there is so much more going on. I really thought it summed up the disease so well. I have only recently joined the forum but already I can see how interesting and educational it can be - the biggest bonus being that none of us need any longer to feel totally isolated. Hope you are having a good day. Gabs.

[seekingfreedom]

Barnclown, I love that - and really wish I had the nerve to say that

I get more and more frustrated by this - and am getting more resolute that there needs to be a national campaign. You see things on facbeook of a similar stance about invisible illnesses.

i was told by a medically retired consultant at church recently (theyd had their own health issues) that 'you look far too well to have lupus'. I was told hat after keeping everything to myself and just needing to tell someone. Ive shut up since then, and get on with it.

Im still at waiting diagnosis - have clinically confirmed raynauds, and tick alot of the other boxes, just awaiting bloods - have been told I do have CTD, just dont know which. As a health professional myself, my experiences had radically changed my approach to my job (I think I must have been an actress in a former life) , but I am emotionally exhausted by the end of the day, and often am just a miserable worn out grumpy mummy!

So .... .... we need a revolution - and awareness campaign. Any ideas?

[Barnclown in reply to seekingfreedom]

Will think on that....

meanwhile, the other kinda thing I say, which really seems to make them pause is: well, I'm ok, but my progressive illness is no picnic. They stare, mouths open

I also find my stick seems to mean almost anything I say in response to silly health comments gets a lot of respect. They ask: why do you need the stick? I say: to keep me from toppling over, haha! They stare, mouths open

[Hidden]

Had to laugh, my Action for families, charity caseworker said exactly the same to me yesterday - "you look really well" - I hadn't showered in a week and had just come back from my psychiatrist where I'd talked about many things including the strong desire to end it all - I have neuropsychiatric lupus so I get mood swings blah blah, my children keep me anchored thank goodness. We must think of some good one liners as a retort. Let's brainstorm:

Thank you, having a chronic illness does give one a certain glow.

Yes, I'm lucky, lupus is attacking 'me' from the inside out.

It doesn't seem possible, does it? To look so good yet feel so s****.

The double whammy of lupus, to suffer the pain and to not be believed because we look well.

It's the wallpaper masking the mould.

Xxxxx not particularly good, I hope you guys can come up with better ones. :-)

[loopy-lou]

You are not alone on this & I totally understand how you feel. My mother is 80 and has never had a day's illness in her life and is "old school" with the attitude of be quiet and get on with it. A relative of a friend of hers has lupus and mentioned that she seems fine and is able to drive long distances. Again, when Lupus was mentioned briefly on TV recently she mentioned that they looked ok too! She has complained that all I talk about is my health. She has now used Lupus as an excuse to give my sister power of attorney over her property/financial affairs. I received a copy letter from her accountants (neither she or my sister- a nurse) had mentioned a thing. I was so shocked and hurt that I rang for an explanation - the answer was, "well, you have lupus". The stress sent me into a 5 day flare. I haven't spoken to her for a month having previously telephoned daily. I am lost for words. I often feel we are in a "no win" situation with lupus as people do not understand....Please don't feel alone just keep posting here.x

[Barnclown]

Loopy, that's terrible. I've had something v similar in my family: hurt my feelings & offended my integrity. And yes: was lready in a flare, which got even worse hey presto. No win is right: catch 22!

[DaleDiva]

As a bit of a stand I posted a staus about invisible illness and not looking ill. My sister replied with, but you look rough! Thanks for that!!! So maybe people are just being polite. Not many are as honest as my sister.......

Unless of course you lot aren't really ill (JOKE!)

[trueman in reply to DaleDiva]

made me laugh

[seekingfreedom]

Thank you, having a chronic illness does give one a certain glow.

Yes, I'm lucky, lupus is attacking 'me' from the inside out.

It doesn't seem possible, does it? To look so good yet feel so s****.

These are FANTASTIC - love them!MAny people dont know - i dont tell anyone anymore, exhausting playing a role, but how it is.

IF I ever have enough nerve to retort one day when I am feeling rubbish, i so need to remember one of the

Thank you so much for posting everyone, its certainly made me not feel so alone x

[Carolha in reply to seekingfreedom]

It's surprising how well you can look on 16 tablets a day, if it wasn't for them I wouldn't be here! Xx

[Tinksie]

Thank you everyone. I do feel like I've had a group hug though I'm sorry to hear about some of the horrible experiences you have suffered. Guildford, I love your one liners, especially the first one! How about , 'Constant pain must suit me' as a possibility?! Xx

[Chapter]

I relate to everything said here. It is difficult to just smile, and accept the compliment, when you know that the reason you look healthy is because you are feeling sick, Your cheeks are rosey and your eyes shiny because you have a splitting headache, your eyes feel to sore to even focus properly, your legs are to tired and sore to move so you are sitting quietly hoping everyone will leave you alone. We are not alone with this with Lupus or, as I was recently reminded, with many diseases. My husband and I recently participated in a fundraising walk for Type 1 Diabetes, our 14 year old granddaughter has had it for 8 years. It certainly is a reminder of "but you look so healthy". There were so many strong, healthy looking people - toddlers to grandparents - it would be difficult just looking to know which people had diabetes. So many children running and laughing together, they look wonderful and happy. Everyday for these young people is a challenge and from one day to the next could be a disaster. As with Lupus, if you don't have it in your life, you really don't understand it. Our granddaughter sometimes feel the same as we do but, being a teenager now, she is much more likely to respond to the comments of she "doesn't look sick", especially when her cheeks are nice and rosey (sugar high). When people say, "but you look fine", she lifts her shirt showing the pump line going into her belly and says, "we'll I guess I won't be needing this anymore then". Every year we wear matching T-shirts, this year she wanted us to each write a message on our shirt, in response to what she thinks are stupid things people say to diabetics.

So, next time your Rheumi (happened) or your optometrist (happened), or anyone else says, "well you are looking healthy" maybe - "Well thank goodness, now I can throw away all my meds!"

Keep working on them!

[willowwag]

Hi all so glad this came up, really shatterec after a crazy week in work, i really try and push through all the pain while in work as i feel as though they just dont understand. Well today a very up himself customer came in, and he just caught me having a slight yawn lol! He walked over to me and said my girl you need to start going to bed earlier and stop drinking and partying lol, i was so shocked, in my reply i said i dont drink, i dont party, i can hardly bare the pain im in, have you hered of lupus, no if not then open your mind and look it up, i have it and its a long term chronic illness, i cant do anything about it, but you can do something about your narrow mind.

[Hidden]

I just tend to say things like, I am great with make up, or have you been to spec savers recently, or even I know it's amazing how well you can look when you feel rubbish!

I try to take it as a compliment, but I know what you mean, a lot of people say this just to be kind too.

Hope you feel better today,

Cazx

[Purplesox]

Guildford I absolutely loved your one-liners! I think I'm going to have to learn them by heart, because like many of the others, I can never think of exactly the right response when I'm put on the spot like that - looking fine but feeling rubbish! Thanks for making me laugh for once about this horrible disease.