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Date: 20.10.2010
From: sandra b

Subject: You wouldnt know to look at you !!!!!AHHHHHHHH

Does anyone every get this said to them. I know people mean well. This makes me feel im making my illness up. Sorry to moan,think coz i slap on make-up (sometimes)and try very hard to look well, this is why its said. My pain cant be seen !!!! They dont see me mornings and evenings. (SCAREY MARY)
Sorry just felt had to get this of my chest. Now ill try and start a happy topic next time ;-)
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Date: 20.10.2010
From: c

Subject: Re: You wouldnt know to look at you !!!!!AHHHHHHHH

ha ha I do every day sandra when i ache, I should exercise when Im in pain, take a paracetamol and when im stiff what have i done to make my self like that lol wish it was that simple!!! I dont even try the make up Im in that much discomfort
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Date: 20.10.2010
From: sandra b

Subject: Re: You wouldnt know to look at you !!!!!AHHHHHHHH

Thanks c Yeah ive noticed the make-up is getting less with me and hair stuck back in greased back ponytail most days !!! Ugg boots or trainers, id be lost without. Bendy wonky painful fingers and toes, no manicures! What about this one " Is there nothing else you can take" WHAT DA HELL If i take any more medication. im a walking pharmacist lol phewwwwwwwww
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Date: 20.10.2010
From: Sally

Subject: Re: You wouldnt know to look at you !!!!!AHHHHHHHH

Yeah, all the time. You look so well! Huh? That might be the steroids, of course (weight gain is always described as 'looking well')
One friend said to me on Saturday she didn't realise I was so ill because I sounded alright on the phone. There's nothing wrong with my voice! Yeah, it's very boring. Another friend told me yesterday that I would do better under an orthopedic surgeon. I have inflammatory arthritis not osteo and don't need an op, yet! Very bizarre.
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Date: 21.10.2010
From: KayJay

Subject: Re: You wouldnt know to look at you !!!!!AHHHHHHHH

Sally and if you saw an Orthopedic Surgeon there is nothing they can do as I've been told by the Ortho guy I saw anyway.

I'm also getting fed up with family members who keep asking me why it takes so long for me to get out of bed !! It makes me feel like a lazy so and so they don't understand how long it takes for us to get the old fingers etc moving and the pain that involves.
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Date: 21.10.2010
From: Sally

Subject: Re: You wouldnt know to look at you !!!!!AHHHHHHHH

hi Kay, you are right no orthopedic surgeon would want to touch me. I don't know what she was talking about. Funnily enough, just had a phone call from a friend who said I sounded ok! Well, told him about our mutual friend who said the same. He had the grace to laugh!
It's a very had illness to explain. Spoon theory??
xx
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Date: 21.10.2010
From: katknapp

Subject: Re: You wouldnt know to look at you !!!!!AHHHHHHHH

Hi,i get told i look ok especially when i have make-up on oh and if you dare laugh and joke you get "well you seem perky enough" grrr,
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Date: 21.10.2010
From: karen

Subject: Re: You wouldnt know to look at you !!!!!AHHHHHHHH

There is one guy at my sons school that overheard me talking to a friend about my ra

Now all I get is "Are you Ok? You're not are you, you dont look it"

When actually Im feeling quite well that day! lol

Karen x
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Date: 22.10.2010
From: S

Subject: Re: You wouldnt know to look at you !!!!!AHHHHHHHH

Yes, I agree Karen, being told you look really ill when feeling better is very disconcerting! Guess they can't get it right :)
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Date: 23.10.2010
From: Tom H

Subject: Re: You wouldnt know to look at you !!!!!AHHHHHHHH

I think some people just say something because they feel they need to!

I get some baffling comments, you've just got to smile :-)
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Date: 26.10.2010
From: Angela

Subject: Re: You wouldnt know to look at you !!!!!AHHHHHHHH

Sally HA HA you do make me laugh, its so true with the "you look well thing" both my husband and I were only saying the other day people say that to us cause we are fat!!
Never mind at least the fat keeps the wrinkles away haha.
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Date: 26.10.2010
From: Angela

Subject: Re: You wouldnt know to look at you !!!!!AHHHHHHHH

Sandra B, Yep agree with you totally I get the same,Like Tom says though I think some people just say something because they feel they need to.
The crazy thing is though it makes me feel guilty like I should be looking like death warmed up all the time,same with the DLA thing that makes me feel guilty on good days Crazy Hey
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Date: 31.10.2010
From: helend

Subject: Re: You wouldnt know to look at you !!!!!AHHHHHHHH

Hi I have also had people say to me you look sore when Im not or you look good today when im in agony.even worse is when im angry justifiably about something family and work colleauges say are you having a bad day, in a lot of pain "I can tell by your bad mood"NO I am just angry I am allowed to get angry even if I do have RA
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Date: 01.11.2010
From: Becky

Subject: Re: You wouldnt know to look at you !!!!!AHHHHHHHH

Yes, people say: "Oh but you are looking well." A few weeks ago, I was on a bus to the hospital, standing room only. A woman was sat on the 'disabled' seats with her daughter while I stood wobbling about in the aisle. I didn't even bother to ask her to move as I know that she would probably have said "but you are not disabled." RA is often a hidden illness. People cannot see you first thing in the morning, or feeling sick with some of the medication, or trying to get dressed alone, or trying to get into a can of tuna! Sometimes you have to take a deep breath, smile and be thankful for the medication that is available to us. xx.
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Date: 11.11.2010
From: AJ

Subject: Re: You wouldnt know to look at you !!!!!AHHHHHHHH

I have just found this forum and finally someone else knows how i feel. If one more person tells me "you wouldnt know to look at you" or my other personal favourite - "ooo i know how you feel, i get stiff now i am getting older" this usually from somone aged 70+ I want to scream i am only 49, and no its not about getting a bit stiff. Its all about being in so much pain you want to give up and die, being so tired you cant even sit up to read, or watch tv, its being so depressed that I dont want to even try new meds. But at least you wouldnt know it to look at me lol
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Date: 01.12.2010
From: dolly

Subject: Re: You wouldnt know to look at you !!!!!AHHHHHHHH

YEAH I CAN SAY I KNOW HOW YOU FEEL. AFTER HAVING RA FOR SO LONG [41 YRS] PEOPLE THAT KNOW ME DONT SAY MUCH ANYMORE BUT THE PEOPLE THAT DONT KNOW THEY STARE AT MY HANDS [VERY DEFORMED] AND ASK WHAT HAPPENED? YOU TRY TO EXPLAIN RA BUT YOU KNOW THEY LOOK AWAY STILL WITH NO CLUE. IF THEY ASK WHAT IT FEELS LIKE I TELL THEM IT'S LIKE HAVING A SEVERE CASE OF THE FLU MULTIPLIED BY TEN-ACHING, STIFFNESS, HORRIBLE SEVERE PAIN, NO APPETITE AND NAUSEOUS FROM MEDICATIONS. AFTER MANY YEARS OF BEING THIS WAY I STILL SAY OTHER PEOPLE THAT ARE "NORMALLY" HEALTHY AND DONT LIVE WITH SOMEONE WITH RA DO NOT HAVE A CLUE.
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Date: 01.12.2010
From: Amy

Subject: Re: You wouldnt know to look at you !!!!!AHHHHHHHH

I know how you all feel, and it's actually good that I'm not alone in this! When i'm sore and feeling really crappy with my RA people say what you sulking around for etc... and when you try to explain they just don't understand the most common one I get is oh, is that not what old people get? Grrr! It sounds terrible but sometimes I wish they had it just for a couple of days to see what it can be like! Don't get me wrong I can have better days but on a bad day the last thing I want to do is sit and explain why I feel crap! x
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