Why is it that when you say someone has shingles people respond with "Ouch that's painful" but never say that about RA?!!!
Why is it?...............: Why is it that when you say... - NRAS
Why is it?...............
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40 Replies
•
It is because you can see shingles you can't see ra. YOu can see cancer you can't see ra. I understand exactly what your saying though and like you it annoys me as well.xxx
• in reply tosylvi
Because shingles is a known quantity and is usually short lived rather than chronic for life. Also I have found that most people I speak about RA to haven't got a clue what it is and think its "just arthritis". But even "just arthritis" deserves more sympathy I quite agree! X
I don't think most people realise just how painful it can be. I remember talking to a gp years ago about a lady with ra who just wasn't managing her pain. The gp's response was that she should stop moaning, she only had a bit of arthritis pain!!!! I have heard the term 'a bit of arthritis' so many times. I think general perception is that we just have the odd ache here and there, people genuinely don't have a clue.
Hi,
I believe it's because most people do not understand that RA is a disease and think its arthritis that only effects the joints.
Comments of, my knee hurts too or I know somebody that has arthritis but they manage etc highlights the lack of knowledge or understanding.
I have learnt not to care what others think.
I concentrate on me, my family and my home.
And when I have those low days I can pop on here and talk to some kindred spirits !
Gentle hugs x
Latest thing I've been told is that I need to stretch before I get out of bed in the morning. That'll put me right, apparently. It's great to hear that actually, as I'm getting a bit sick of Methotrexate, Sulfasalazine, Naproxen etc. so it'll be such a relief just to do a few stretches and get back to my old self without the help of drugs.
Hang on though, I DO stretch first thing! How come Mrs Know-It-All didn't listen at all when I told her that? Probably the same reason she doesn't listen when (very occasionally) I tell her about my knackered joints & the trouble I have lifting anything, even saucepans.
Once, just once, I went to a different pharmacy to get my prescription & when the chemist heard I had RA her face clouded over & then she smiled sadly and heartily wished me a lovely weekend. Some people understand. Luce x
jeanabelle• in reply to
Something similar happened to me in Sainsbury one day. I live on my own and I had to go out but I really wasn t up to it on the day.....anyhow I thought I was going to collapse and made my way to customer services to ask for a seat.....another woman was standing beside me, we were waiting for the attendant to see us.....a woman standing beside me asked me what was wrong with me, i told her and I said I wasn't well and needed a chair.......'right' she said and went over to the attendant and demanded a chair immediately for me. The attendant knew by her voice that this was serious and came around the counter to me with a fold up chair. I was by this time starting to get nearer to the ground I was so bad.....the chair came just in time. The woman then 'ordered' a glass of water for me too. I left my car in the car park and got a taxi home.....I wasn't even able to drive home.
She told me that her best friend had rheumatoid disease so she knew how bad it can be. I was so gratful that she was there that day. I dread to think what would have happened if she hadn't been there. I would have ended up on the ground with a crowd around me in the middle of Sainsbury.......doesn't bare thinking about! There are some enlightened people about.....
I think you're all right - people don't really understand about RA. I've got OA as well & even then they don't understand how life changing it all is!
It wold be lovely to do a few stretches & it all be well - I'm fed up of taking so many drugs - at times I do wonder if they are doing any good & I'd be better off coming off all of them!
Always comforting to come on here....I know I can find understanding & support....xxxxxx
I actually had someone who said, well she has RA, and she doesn't bother taking any medications, just the occasional aspirin, as she doesn't believe in drugs. Good for her, I'm glad she isn't bad. (Probably misdiagnosed!) But she does not come across as sympathetic, when I talk about my situation.
Ye frustrating isn't it!! That's why I was glad NRAS just did heir first raising awareness week. I would love a TV campaign to say what RA REALlY is!! Hope you r feeling ok today xx
• in reply toallanah
The only trouble is that my rheumy told me he hadn't realised there was an RA Awareness week until the last day?
I agree that we should conserve our energy for those whom we love but also think that if there's any going spare its important to promote RA Awareness with as many people as will listen.
Re pharmacists and deceptive appearances - I was collecting my MTX and Levothyroxine the other day and there was a very tall, striking looking young woman working as a locum. I asked her about taking B12 supplements with my drugs - explaining why. She was very cool looking and inscrutable until I mentioned that I have RA.
Her eyes slightly welled and she told me she had been diagnosed in May and was taking Sulfa but it wasn't doing much yet and she thought it would be MTX next and she would certainly get her B12 checked beforehand.
We spoke for a bit and a queue was forming so I handed her an NRAS card and told her that the helpline is great and to phone me if she needed a chat ever. She did look pleased. X
allanah• in reply to
Gosh, I suppose it was the first year and it would be hard to reach everyone I suppose, that's why I think a TV campaign would reach more people but is obviously very expensive!!! That's great to know your pharmacist knows and bless her has experienced RA, awful for her but it might be beneficial or you in the long run? Anyway T, how r u doing these days?
• in reply toallanah
I think if better save that for a PM Allanah re how I am.
Re my rheumy - well he's the top man in a big rheumy dept so you would have thought he would know it was happening but maybe he was too busy to open emails from NRAS? He did say they are doing very good work but haven't got enough of a Scottish presence. I said that's what Scottish ambassadors are there for and it was only the first RA awareness week ever so lessons could be learnt and it would go from strength to strength hopefully. He agreed but said if a consultant rheumy like him isn't aware then that probably was a sign that most people in the general population or media aren't aware either. X
allanah• in reply to
Mm more work next year then, have u done much ambassadors work yet?
• in reply toallanah
No nothing yet. I was meant to be going to a lecture on the Rs of Arthritis or something (Arthritis Care) - my rheumy was chairing it. But it was cancelled at the last moment and been postponed until November now - he did give me the new date. We get sent weekly bulletins listing every motion relating to health and care that comes before Scottish Parliament - it is really interesting. We all meet up on 9th October in Edinburgh with CEO and others. X
beauty96• in reply to
If you take Thyroxine you do not change beta carotene to vitamin A and do not pick up B12 easily. There are many more things that happen also. Esp the automimmune diseases that can get a hold. One thing seems to lead to another in many people.
• in reply tobeauty96
Thanks Skeggy. One thing that I think everyone should know before they take MTX is to make sure their b12 is checked. Folic acid will otherwise make B12 test results appear normal when in fact they may not be.
Ps sorry Pauline chatting,! But I think it's evolved from your question xxx
There's a weekly slot on radio 4 in which someone (Charlotte Green yesterday) reads out anonymous, one sentence 'news bulletins' from listeners about stuff, big or small, that's happened to them over the week. I expect many of you have heard it. How about sending them RA related snippets?
Luce x
• in reply to
Nice one Luce - go for it! X
Hi Pauline sorry i'm a bit late to this. I can so sympathise with you most people haven't got a clue re RA. At least we have this site xxx
It's been interesting hearing what others think - I was thinking about it all in the middle of the night when I was trying to sleep!
I knew I'd be able to voice it on here! 
allanah• in reply to
Ye it's been an interesting post, cheers !
The name doesn't help, to most people rheumatism and arthritis are just aches and pains you get when you get old. It is a shame it doesn't sound more serious and impressive like Gullain-Barre syndrome or Wegener's granulomatosis for example, then no one would be able to say 'yes we all get a touch of that at our ages haha'.
My friends mother has just been diagnosed with RA at the age of 89! When I saw her she often talked about her rheumatics. I had no idea what she was on about.
She put her symptoms down to ageing! Now she is on MTX and it has changed her life. We need more education and information out there.
Don't bore people but we all should try inform people about RA, how it affects people and how it differs from osteoarthritis.
• in reply toScottishlad
Its how you tell people that makes the difference I find. If you can introduce it in quite a gentle, non-lecturing way I find most people are intrigued. Many people just don't know the difference because of the word arthritis - but once you explain the autoimmune, systemic part and the fact that it can affect anyone of any age they seem to click. Others just don't want to know and it's a non starter so you just have to use your instincts about what kind of people they are and try not to make it only about you if possible, but broaden it to how RA works and whom it can affect.
My friend told me yesterday that many people struggle with the idea of all the chronic diseases and conditions because they find them depressing and they can't offer a "well you'll be better in no time I'm sure - keep positive it will all be gone soon" and therefore it's hard for them to know what to say. This friend lost her son and her only child a few years ago and she feels it's the same thing as that in some ways. Some people avoid her but many don't because she is so warm and engaging as a person. But she does explain quite honestly that there's a big black hole in her and her husband's lives that will never fill again if people ask - which generally they avoid doing of course. Tilda x
Caza• in reply to
Well I chose not to tell people for the very reason that they wouldn't understand. I did try it out on a good friend who asked me why all the hospital appointments,I told her & her reply was, I get that in my knee you should exercise more. I told her if she was really interested she should google it,she didn't.
The good thing for me is that at the moment you wouldn't be able to tell by looking at me my fingers & toes are beginning to change shape but only just. Nobody at a dinner party or anywhere do people ask after your health but people always ask after your children, it must be so hard for your friend.
But I guess I'm still in denial so if I don't tell anyone I have RA it can't be happening can it!!!
How are you Tilda? x
I guess it's true that people find it hear to empathise with anything outside of their situation. Tilda I can relate to your friend's "black hole" as 2 of my children have died - people certainly then are lost for words!!
allanah• in reply to
Well seven words I can think of is, I am very sorry for your loss xxx
Caza• in reply to
I'm so sorry to hear that 2 of your children have died. I'm friends of 2 families where this is also the case I see how life is so very hard for them. Many hugs xx
• in reply toCaza
I'm terribly sorry to learn this too Pauline. My friend and I have just been for a long walk and talked once again about her loss. She's just the most wonderful friend anyone could have and she's been there for me when I was first diagnosed - she was the one who took me to the rheumy and came in with me. She's amazing.
I think people who are naturally good communicators don't struggle with learning they have a chronic disease quite as much because they find ways to convey their pain without scaring people off - but it's a very fine line to tread and it probably helps to be understanding of how the person at the receiving end feels too - learning that their close friend has something that is turning their life upside down and round about? I almost feel that I couldn't have a good friend who didn't make some effort to learn about RA and find out how I was feeling now? Tilda x
For me it's a long time a ago although although it's easy to put myself back in that place! However through the suffering I have learned so much - not that it was the way I wanted to learn!!!
But I think that it's true that when we go through any adversary we find strengths that we never knew we had!
It's through pain that we learn - a child learns quicker about what hurts when they test it themselves. I used to look after 2 boys who had a genetic condition where they didn't feel pain, however their bodies were so damaged by injuries, their joints would make all of ours look fantastic in comparison!! They needed pain to learn how to take care of their bodies!
I teach Tai chi, everyone has a chair and sits or stands as they wish. I love it and it does help to keep me positive and to some extent out of pain. It is the painkiller I have apart from massages. There is nothing else as my body rejects everything even paracetamol. At times I could scream for a painkiller. Why can't they make them out of paracetamol and not aspirin. The stronger ones like the chemo ones were tried out in hospital conditions and failed cos of so many side effects. I am fed up not haivng something I could take.
Skeggy I'm not surprised! I can take cocodamol & Tramadol but not a lot else but at least they do help.
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