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DrinkofWtr
07-31-2008, 09:00 PM
Are you told you look so good, when you feel so awful and every muscle and fiber of your body aches and pains?

At least they can't say that to me anymore because my complexion and skin look like crap. Besides, I am so tired of hearing the above!

jojo-at-the-bux
07-31-2008, 09:15 PM
oh my gosh yes. and i feel like im screaming inside. Or they say you look ok, r u sure you feel that bad. i guess people have a hard time believing if they cant see. Thats y i love you all, u know and you dont judge!! thank you!!

KathyW1958
08-01-2008, 02:00 AM
Hi,
I hear where you are coming from. I think all of us have heard that far to many times. When I first got diagnosed, I told one of my sister-in-laws that I was diagnosed with Lupus and she flat out called me a liar. It was upsetting to say the least. She said this, because she had a friend with Lupus and I did not look like her friend. I just told her that the doctor diagnosed the lupus and that if she did not want to believe me that she could believe what ever she wanted to believe. She called my husband and asked him if it was all true and he told her yes. She tried to say that I looked to well to have Lupus. It is sad when people say that you look so good when you feel so bad. I guess this is just the way this illness is.

Hugs,
Kathy

Saysusie
08-02-2008, 12:02 PM
To show you how common it is, there is a website entitled butyoudon'tlooksick.com

Peace and Blessings
Saysusie

rob
08-20-2008, 03:22 PM
I hear this alot myself. I don't look my age, so much so that I still get carded whenever I buy a drink, and I'm 40. And due to genes, or physical build, or whatever, I look like a guy who works out and is in decent shape. I'm not. I never thought looking somewhat fit, and healthy, would work against me. I've heard "but you don't look sick" more times than I care to remember. I've gotten to the point where those words don't register with me anymore. In one ear, and out the other. I used to get so angry, if people only knew what was going on inside, they wouldn't keep saying that. Getting angry certainly didn't help me, so I do my best to ignore people.

hatlady
08-21-2008, 01:40 PM
As Saysusie said, (hmm...try saying THAT 3 times fast! :lol: )

butyoudontlooksick.com is wonderful - they have the "spoon theory" there that helps explain to people how you really DO feel. My staff knows that on days I wear a spoon pin I'm low on spoons. And they try not to drive me nuts with issues.

I've just given up trying to explain - when someone says "you look great!" I just say "thanks, I appreciate the compliment!" With a close friend or family, I can add that I really do not feel that way if I'm having a bad day, and they'll understand. If they're not someone close, I just let it pass -

KathyW1958
08-21-2008, 04:17 PM
Hi all,
I joined that website that you mentioned too. It is a good site too. I just ignore people when they tell me that I don't look like I have any illness. I just say whatever and let it go at that. I don't waste my time on them.

Hugs,
Kathy

Lula2ya
08-21-2008, 09:18 PM
You know I have to say something here... most people don't mean anything negative when they say you look so good. It is impossible for them to understand Lupus when we do look well on the outside. How can we possibly expect them to really understand since they don't have it. I think we should be understanding and patient with them. If we ourselves didn't have this disease would we really, really 'get it'? Sorry but I don't think so. I don't know what it's like to lose a child because I've never lost one, I don't know what it's like to have cancer because I've never had it. And I hope no one expects me to just like I don't expect therm to understand what it's like to have Lupus. I have Lupus and it's my thing to deal with not other people's. If they think I look good I tell them thank you because I appreciate the positive comment. If they want to call me a liar then fine because even if I didn't have this disease they would be rude anyway about something else. Not my problem.

rob
08-22-2008, 03:41 AM
Being told "you look so good" doesn't bother me a bit, and it is indeed a compliment, and a very positive thing to hear. When people say "but you don't look sick" when they know full well that I am, is what bothers me.

laurid8967
08-22-2008, 07:08 AM
Rob -
I completely agree and was just about to post the same thing....I love when people say, "You look good" because there are definately days where the same people look at me and say, "How are you feeling?" - with that look on their face like "Holy cow!" which I KNOW indicates I look pretty bad...lol..But even that doesnt bother me - the majority of people in my life are really good - I cant complain.
But, anyone can tell me I look good anytime! Especially now - my face is ENORMOUS with the prednisone!!
Lauri

Lula2ya
08-22-2008, 08:16 AM
I agree with you too. When they say you don't look sick appears to insinuate.. we are lying. It just shows me again like I said before that they don't get it. Which is ok because I can't expect them to. They tend to forget we are sick. I had someone the other day say to me, "you get a shot once a week?.. what for?" I told them, "for my lovely disease" and they said..'oh yeah'. They had forgotten I was even sick because I don't look it at all. I will admit I was slightly offended but The reality is... I am the only one who thinks about lupus everyday because I am the one who has it. I have no choice because every morning when I wake up it's there. Even my husband doesn't wake up thinking about it on a daily basis. I don't expect it to be on other people's mind the same as it is in mine or even to understand. I'm not trying to be contrary... but am I making my point? They say such things because they don't and can't truly understand.

rob
08-22-2008, 10:48 AM
Oh, I know what you mean Lula2ya. Lupus is an unwanted companion that I have to think about, and deal with, every morning when I wake up. Others truly cannot understand. Ever since I was diagnosed in 2004, I have had to learn a new definition of what fun is. Fun is an activity I am able to do that makes me completely forget I have Lupus, even if it's for just a short time. But, no matter how many temporary escapes I manage to have on any given day, IT, as Oluwa calls it, is always there, waiting.

sits_inthe_corner
08-22-2008, 04:21 PM
Hi gang...

Crawling in with my last ounce of energy....

Damn I feel like crap....

And funny enough today of all days, I had some guy hitting on me :P

Go figure. It's been years since anyone other than my husband flirted with me.

I feel the worst I've felt in over a yr and here's this dude making happy eyes at me.

If I had enough energy I would have hit the floor laughing.

So it's funny to find this post here.

It's not that it bothers me when people say I dont look sick. I guess that's a good thing. Cause I sure wouldn't want to look the way I feel.

But when I tell them I'm just hanging on by a thread and they still try to milk me for extra, that cheeses me off.

Course I dont have any problem speaking my mind....I'm not exactly shy hahahaha.

If I'm not up to it and someone tries to push me they'll find out quick enough that no means NO!

I'm very tired physically and mentally right now...and I don't handle that well. I'm like an old bear that got woke up to early.

wonderwoman6
08-22-2008, 06:20 PM
I come from a background where I used to make a good living from my physical appearance. No, not the type I would need to go to confession over. I get that people are offended when someone says you look so good to be sick. Like they think people with a chronic illness need to look like they do when they have the flu or a bad cold. It is just plain ignorance I think and I do pray for patience and tolerance. I even get it from my husband!@ I also know from when I did volunteer with hospice that so many people have such a weight on their hearts and are able to smile and be polite and kind to others. I know that I try to take into consideration the person the comment is coming from. I bet that the majority of the time people are just trying to make you feel better as they don't know what to say. When I walk into a room full of people I am aware that everyone has something or someone pulling on their heart. Others just hide it better.

Lula2ya
08-22-2008, 06:41 PM
Good point wonderwoman!!!