So tired of hearing "rheumatoid arthritis. Have you tried parsley?"

I'm sick and tired of explaining my swollen hands to co-workers and customers. I'm doing my best and sucking up the pain while I'm at work. When I say I have rheumatoid arthritis that's why my hands are swollen, a customer actually told me to wear a sweater...My boss told me to "try eating parsley"...Why can't I work without being judged?...Why do I have to listen to people tell me about their grandma's arthritis?...sorry for the rant...too many nosey people today...I wish this disease had another name so people would want to "GOOGLE" what the disease is and not give me advice on what to wear or eat....lol

[mirren]

Lol I know, a few weeks ago if one more person told me to try glucosamine, garlic, fish oil, copper bangles, coconut oil ....I was going to ram a coconut up their jacksy! Now my wrists are so weak I can't ram anything anywhere...

I have decided to think the best of people though, and think they are just trying to be helpful and fill conversation gaps. Once they start the conversation they feel obliged to finish it on a positive note. We are all guilty of it at times, trying to solve each others problems, recommending things we have tried, its an attempt at empathy even if it is a crap one.

And its not just us, my sisters daughter has a chromosome abnormality and is very disabled - people ask her if she has tried all sorts of bizarre things!

Maybe we need t-shirts 'yes I have tried coconut oil'

[popsmith1874 in reply to mirren]

I know it's really annoying, I've decided when I'm out walking I'm going to take a tape recorder with me and when I'm asked what's wrong with you I can just switch it on, I think it's just ignorance I must admit before I had this illness I thought it was just a wee twinge hear and there how wrong was I. Take care

[Hidden in reply to mirren]

haha I think I'll buy one of those t-shirts

[EmmaS-NRAS NRAS]

Hi suzannedale,

Sorry to hear that your colleagues and customers are not understanding of your disease. Unfortunately there is still a huge lack of awareness of the condition. NRAS has some handy 'what is RA' business cards which you might find useful to have on you - they explain that it is an systemic autoimmune disease that attached the joints and can cause irreversible damage, it can affect organs, it explains what the symptoms are and states that there is currently no cure. You can order them by calling the NRAS office on 01628 823524 or email [e-mail]

The Rheumatoid Patient Foundation in the USA also has similar cards available. rheum4us.org/

For employers, NRAS also has a publication to explain the condition to them specifically - nras.org.uk/publications/wh...

Hope the above information is helpful.

Best wishes

EmmaS-NRAS

[Hidden in reply to EmmaS-NRAS]

Thanks emmaS I will order one of these publications for my employer.

[Jeanabelle60]

Susanndale, this is the topic that just never, ever goes away. People on this site have been complaining about this from I come on here over 4 years ago, I was sick complaining myself and have since stopped using the generic Rheumatoid Arthritis title. I have been referring to it as Rheumatoid Disease.....other have different titles that they prefer.

I found that when I say RD people will ask what that is and I explain that it is an auto immune disease that causes pain all over my body......that usually stops them telling me about their poor granny's sore knees. To officially change the name would require an awful lot of money that I can understand could be of more practical used spent on cures/treatments.

So there you are, I've no doubt many will be telling you much the same thing and I have no doubt either that this same topic will be repeated ad nausium (spelling).....

[flowers89]

I know just how you feel i work in a pub and when i got my splints on hand and people ask why i say ive got RA and they say yes ive got arthritis in my hips knees ect you should try this or that remedy ,i cant be bothered to explain RA is a auto immune disease not the same lol,,x

[nomoreheels]

Yes, it happens.....regularly, but since saying I have RD (Rheumatoid Disease) it opens up the conversation to questioning rather than "oh I have those pains" or "you should try (whatever the latest cure all is)"! My Rheumy & her team even use it now soon guess it works for them too, greater understanding that it's not any old kind of arthritis, that's not to say another arthritii (!!) are any less painful just not the autoimmune disease we all know & live with. I explain as much as is needed or asked & more people, friends & family understand now than don't. Like many I also have Osteoarthritis & it helps also when explaining the difference & comparing the two, the difference in meds needed to control me, that helps the penny drop!

[Fra22-57]

As soon as you mention Reumatoid arthritis people just label you the same as arthritis or even reumatism so think I will say Reumatoid disease in future too.

No I don't just ache I am in agony at times and its debilitating

[Hidden in reply to Fra22-57]

I will start using the term Rheumatiod Disease from now on. Thank you all for your opinions and suggestions.

Take care

Sue

[Karen77]

What does parsley do!?!? That one's news to me!

I think you just reply with, "Thank you, I am fully informed of all of the different therapies out there and am following the one that best works for me."

[Hidden in reply to Karen77]

My co worker says she uses parsley as a naturel duretic. She thinks if I go the washroom more then my hands wont swell.

[Karen77 in reply to Hidden]

Oh, the swelling was PEE!!! I didn't realize! Haha. Maybe you ate a magic Willy Wonka gobstopper like Violet Beauregard and all you need is a good squeeze!

[helixhelix in reply to Karen77]

At least parsley contains folic acid, so might be a bit more useful than a copper bangle......

[Karen77 in reply to helixhelix]

Ah, I did not know that! But copper is supposed to do something too, right? I know a lot of people (who don't have RA) who swear by copper... for... some sort of useful purpose??

[helixhelix in reply to Karen77]

A church roof perhaps?

[Karen77 in reply to helixhelix]

haha

[Katheryn13 in reply to Karen77]

My brother goes on about how I should wear copper bracelets. Yeah. Because they're gonna magically fix my joints. Sigh. He knows nothing.

[Hidden]

You can imagine here at NRAS we get all sorts of weird and wonderful "remedies" suggested to us. Key thing to say back to anyone is "where's the evidence?" just today I've had a Honey and Cider Vinegar product suggested. It would be wonderful if there was such a cheap and easy remedy wouldn't it...imagine the savings to the NHS! It must be incredibly frustrating for you all to have such "words of wisdom" and advice given by those who just don't know but I guess they are "trying" to help all be it in a very misguided way. Here's links to two interesting articles on the topic the latter from ARUK establishing there really isn't much evidence to back up some of the claims that so "products" make. Happy reading.

nras.org.uk/the-big-busines...

arthritisresearchuk.org/new...

[nomoreheels in reply to Hidden]

Thanks for the links Clare. Each include some of my concerns when we have "alternatives" discussions.

[Hidden]

Yes thanks for the links Clare. I've downloaded the pamphlet to give my employer.

[Livingston]

I tell people I have an incurable auto-immune disease. That usually turns their gas down to a peep (as my aunty Mary would have said.)

[Sheila_G]

Hi. I must join in after reading all the advice about what to eat, do etc. I think I can go one better. I don't actually mind people not understanding because I didn't know the difference between RA and OA until I got it but I was once asked what was wrong with me after seeing splints and when I said I had rheumatoid arthritis the enquirer replied "Who haven't you forgiven?"

[Hidden in reply to Sheila_G]

Oh Sheila G thats so funny!! You win hands down with that question asked to you...lol

[Katheryn13]

Lol. It reminds me of when people see I have Psoriasis and then either go on about how they know someone who has it or they suggest I try something that no doubt I have already tried. I tend to ignore them and or get snippy because it's alright them thinking they're being helpful but they're often not and I'm the one that has to listen to it and live with my skin so I wish people would leave me alone. Lol. So I can but sympathise. With my arthritis it's not even obvious I have it so instead of getting questions I just get bemused looks like I'm making it up. Sigh.