RA fraud | Arthritis Information

Cygnet's post what do you do when your family doesn't get it- got me thinking of this

How many of you had a bad onset but when you got better- it was such a change for the good people think you are WELL now.

You still have aches, fatigue, side effects from your meds, etc...but you are back in your routine, going to work, keeping house etc..so everyone thinks you are WELL.

In the rare event that you mention any of the above problems do you get brushed off or rolled eyes?

They are in denial that at anytime the mighty RA may come take me out at the knees again.

But they make me feel like an RA fraud.

Anyone else?

Yeah, me too. that happened when I was on Humira. I was improving while on humira, so everyone thought I was "better", but when I had to keep coimg off the Humira because of reoccurring bladder infections... they got to see it did not take much to make me do badly again. And sometimes, while on Humira I had some bad weeks evern taking the Humira.

Everyone around me... now knows I am not going to get "better", but willl be improving and still have days I will not be able to do things. It took 3 years for all of them to figure this out. But I guess when you get moved up to doing infusions... people tend to tie that in with being really "sick", almost hospitally. So... they see it as not doing well. At least that is what I think it is. When I was doing injections no one asked if it was helping me, but they do now when I come back from getting an infusioin. But ya know...

Interesting question - the last few weeks I've been trying to identify what my thoughts/ feelings are on RA. I've been lucky in that my meds are keeping things under control for the most part - still fatigued at times and have those aches and pains at time. I decided what I feel like somedays is being in limbo. Not bad enough that I have to miss work, have difficulty getting around, etc. but I do have to limit myself. Since I do continue to work and get by, some people think I'm either cured or that whatever my problems were are now gone. Not that I want RA to decide to start progressing, but yes....somedays I do feel like I'm in limbo and just waiting for the other shoe to drop so it becomes more real to me and others - or as you say a RA fraud. Yeah- you want to feel good about feeling good- but you don't want people to treat you as if you are well. It's a weird uncomfortable feeling. I can't explain it really. I don't want to be babied but if I feel tired and just want to lie down and do nothing I feel guilty. Even tho that's part of RA but the people around me don't expect for me to need to lie down either. Or if after working all day my hands are sore, I don't feel like loading heavy dishes in the dishwasher but I CAN do it so I DO it. If I didn't I'd feel guilty and if I asked someone else to do it they would probably be like- Why?hi wannabe... A ra fraud [QUOTE=wanttobeRAfree]Yeah- you want to feel good about feeling good- but you don't want people to treat you as if you are well. It's a weird uncomfortable feeling. I can't explain it really. I don't want to be babied but if I feel tired and just want to lie down and do nothing I feel guilty. Even tho that's part of RA but the people around me don't expect for me to need to lie down either. Or if after working all day my hands are sore, I don't feel like loading heavy dishes in the dishwasher but I CAN do it so I DO it. If I didn't I'd feel guilty and if I asked someone else to do it they would probably be like- Why?[/QUOTE]

And as confusing as this crap is for us, imagine how confusing it is for those around us.This is a very interesting topic and I love the term "RA fraud." That's so descriptive of the way many of us must feel. What adds to this feeling of fraud is, to the people who look at us, many RAers look totally normal on the outside and all their symptoms are inside. That really contributes to the opinions that you just can't be that sick if you look that good. I remember having a picture in my mind of what my niece must look like when I heard she was dx'd with lupus. What I was expecting was a pale, frail, sick looking young woman and when I saw her, and she looked just as good as ever, I was shocked and confused. I mean, lupus is supposed to be serious, how can you be that sick and look that good? But you can, and now I totally get it, mostly because I myself have a related disease. But how about all those who don't experience it as we do? No wonder they become suspicious when we function, look well overall and generally appear normal. As I said once before, it makes me want to fake a little limp sometimes, just to show them "Hey, I really am sick!" In short (I know, too late for that!) I feel like a fraud sometimes too. It's only the daily reminder of meds and chronic pain that confirms for me that this is the real, lousy deal.

P.S. I have to admit, even now, when I see some of the pictures you all have posted, and knowing your histories, I'm still amazed at how great you look. And I should know better.

Jesse882008-05-23 14:36:45YES YES YES- all are saying what I feel and cannot articulate!

And yes- I can see that if we can't understand it the people around us can't possibly be expected to understand it.

I need to enjoy these good times and tell myself I AM "well" when I feel good. If I feel bad then I need to communicate to those around me that each day with RA is a crap shoot and today I rolled snake eyes.

The fraud is being given false hope that this medication or this treatment will work, when you cannot get a definitive diagnosis. If you aren't properly diagnosed, how can you trust the treatment?The fraud is being given false hope that this medication or this treatment will work, when you cannot get a definitive diagnosis. If you aren't properly diagnosed, how can you trust the treatment?

ADDressing above Quote

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I think if you have a good DR.. then he's simply trying to encourage you. This isn't an illness w/ a clear cut.. take a certain pill and you're done.. So to me, I have a good Dr, whom I trust, which is saying a lot!! lol.. so I know he's trying to encourage me, he doesnt want me to give up hope.

He has properly diagnosed me, I have Ra, i'm Inflammed, etc..

so now the treatments begin... and that is a process..

Being Bipolar, I guess, i've gone thru all this before, w/ the meds.. so I know this is "standard" procedure w/ incurable illness.. you have to mix and blend and experiment..

it takes Time, a lot of time... and you just have to learn the steps , of how to deal w/ this illness.

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wantobe, just bc you Can do something, doesn't mean in anyway, you Should, you're going to simply have to train your family and say NO.. and Stop doing, pushing past that pt.. what good is that, to go into a flare?

ya know?.. ahh the looking good part, I love makeup and know how to put it on really good, lol.. i have to admit, when i use the wheelchairs in stores, i always make sure to use my huge hand/ wrist brace.. its like "physical evidence" ya know .

People can process it better. I use it on and off..

When its hot out, ugh,its not like its made out of silk, ya know? lol.. in the stores, in the wheelchairs, always..

I'm going to visit my sister and I've told her ahead of time, i look fine, but not inside...

Kudos to those who can work, that would be harder.. but

I think its up to Each and every one of us, to teach people.

Help them understand this disease.. educate, bc man,

lol we barely can get it.. soo.. a process and knowing the tools.