Just wondering if anyone else had a problem in people... - NRAS

NRAS
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Just wondering if anyone else had a problem in people understanding what RA is?

Rockpool60
Rockpool60

Suddenly my friends who I might say have listened to all their woes and moans are now busy or say 'chin up' or 'could be worse' 'don;t dwell' feeling quite down about it :(

44 Replies
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Hidden
Hidden

Hi Rockpool,

Yes the majority of people don't understand what RA is all about, you normally get "oh yes my Aunt Hilda has arthritis in her whatever".

Luckily for me my family all knew about RA before I was diagnosed.

I tell people I have an auto immune disease now rather than Rheumatoid Arthritis.

Maybe you could get some info/leaflets and get them to read up, sadly I think this is the time when you find out who are your true friends.

At least we have this site where we know everyone understands and there is always someone willing to listen.

Mary x

Rockpool60
Rockpool60
in reply to Hidden

Hi Mary...that is so true...or they tell me they have the same symptoms and it is just my age..even though I have been to a consultant..:/

I must admit I am quite shocked at the people who I thought were good friends with some of their comments. It is so true at least everyone on the site knows how awful we can feel. Thank you and take care Fiona x

Hi Rockpool

Yes I have people say oh yes I have that when they mean osteo. A lot of people don't seem to understand the systemic complications.

I have to say my family are the worst and most of them do know the full implications of RA as there is a lot of autoimmunity in my family (no RA though). As I have always been seen as the fit and healthy one listening to their moans and groans, as soon as I mention anything to do with my health my sister just blanks me. My nephew just said all arthritis is the same and my father is just busy thinking that everything I have he has got. I used to think that he was interested in my health until I found out he was only asking me about the symptoms of mine because he thought he had it! So much for family support! It can be very upsetting.

I do have some friends who appreciate the full impact of it. A close friend of mine has severe RA so if anyone understands, she does! I think having the same circle of friends and having seen her go from health to struggling to walk, most of my friends do know what it's like but I guess as with all illnesses it's difficult for people to understand unless they've experienced it or seen someone close to them go through it

I am not a person prone to violence but when you hear someone say 'chin up' don't you just feel like giving them a good slap! That's as long as you haven't got bad arthritis in your hands!

Rockpool60
Rockpool60
in reply to KJay

Hi....sounds like me lol...I would quite happily slug someone who says there are people worse off than me so I should be grateful...omg...I would happily parcel it up in lovely little boxes and give it as a present to those people..but I am too soft to be honest and too good a listener so when I need somebody to listen too..whoosh..they are off...so sad.:(

I am glad you have good friends who appreciate you and know what it is like take care xx

sylvi
sylvi
in reply to KJay

They want to walk in your shoes for 24hrs and then see if they feel different.xx

Hidden
Hidden

Hi Fiona,

Completely, thing is I suppose before I had it I didn't really understand it either, I like to think I was understanding however.

The old 'oh yes I've got a bit of that', do you aye? A bit of what? A stiff finger?!

Or a better one still 'you're so lucky to have a blue parking pass'. Very lucky, living the dream you might say!

I really struggled with it all and did eventually have to start anti-depressants which much as I was against them have helped me so much in getting perspective. People don't mean to come across in a patronising way but as a rule of thumb they do. I have lost a few friends, some I thought were very close, however some other friends who I never knew I had before have truly come out the woodwork. Thing is, life is too short to get upset by people's ignorance. It won't help you get better, just try to focus on making yourself better, it's not selfish but rather self preservation.

As Mazza suggested, it may be worthwhile getting some leaflets - NRAS produce a lot of good info for friends/family/employers of those with RA.

I read a book called Another Alice,it did frustrate me and there were a few bits I really could not be bothered with but I think it would be very useful for friends and family to read. It just helps explain things in a different language I found.

I try explaining it as imagining you had injured yourself and had the flu, you are exhausted and in pain. With this kind of thing you know that gradually everyday you will get a bit better, however with RA it may not. It's relentless and once you have that in your mind you can start enjoying the days that are good. Having a smile on does not automatically mean you are recovered but instead that you have to live and it cannot rule you.

Luckily we're all here too and we all know all too well this horrible illness. You take care, x

Rockpool60
Rockpool60
in reply to Hidden

Funny at the moment I feel like not even speaking to them..and I am a blether usually...txts have stopped and facebook comments..then they say 'snap out of it' no use feeling sorry for yourself there are people worse off...so I think my christmas cards will be very few...you sound like you have had some numpty's too..take care and chat soon x

sylvi
sylvi
in reply to Hidden

I am having a good day and i am going to enjoy it as tomorrow might be a different day altogether. xx

Hidden
Hidden

Oh this sooooo rings true with me!! If you are a reader the book by Marie Joseph "One Step at a Time" is very good to make us feel that we are not alone in our surprise to other peoples' reactions to us!! One of the many comments that stayed with me was someone saying "well you have no bone deformatories"! My sympathy goes out to all folk in their early years with RA, especially if they have a young family. Now as I'm older and my companions complain about (old age) arthritis - I'm tempted to say, "that's nothing; I've had that since I was 23 and had to cope" !! - but don't !!! You are not alone, I'm sure all of us bite our tongues....Kathx

Rockpool60
Rockpool60
in reply to Hidden

Hi Kath...gosh yes my tongue is well and truly bitten. One doctor even said to me before I was diagnosed that ' I look healthy enough to him' stupid man....and I felt ill at the time.. I am 52 now and I am planning what I want to do with the rest of my life..and what suits me..selfish but yes ..for once in my life., you take care xxx

Hi Rockpool

You definitely find out who your sympathetic friends are .

I have a friend who thinks that it is most unfair that I do not have to always pay to park because of my Blue Badge! I would swap with her any time.

The number of people who say " I have RA" and when you ask them when they were diagnosed they say "Oh I haven't been to the Doctors. Or the other one who says yes it happens as you get older.

Still we all know on this site that it can be a pain in the b*m!!

Sam XX

Rockpool60
Rockpool60
in reply to Sam59

Hi Sam...that is so true..I have not applied for a Blue Badge as I can still walk..do you need to apply for it anyway? I am still trying to find out what do do as far as claiming things.

Some people are complete muppets and I think I might have to start saying that too them. Take care xxx

sylvi
sylvi
in reply to Rockpool60

You want to get a blue badge as you don't know when your going to need it. Also claim for dla as its not related to earnings. xxx

Rockpool60
Rockpool60
in reply to sylvi

Thank you Silvi..what if the doctor doesn't sign it? xxx

sylvi
sylvi
in reply to Rockpool60

I don't recall asking a dr to sign the form for a blue badge. Ring your council and get the forms for the blue badge. The dla you will have to contact dwp. xxx

Paula-C
Paula-C
in reply to sylvi

I've got a Blue Badge, I applied for it last year when things were really bad. Don't use it at them moment because I don't really need to. I know what it's like to need to park in a disabled bay, so I won't park in one, I leave it for others who may need it.

My OT filled my form in hands and fingers were bad at the time, my writing's bad enough without RA so it would of been unreadable.. She asked me the questions, I answered them, then she wrote them down. I copied the form for when I reapply. I mentioned to her about not having to pay and being disabled is not means tested, but she replied that this illness cost me enough as it is....expensive comfy shoes.....having to pay for meds......extra on holiday insurance.....well the list is endless, so I should be able to get some benefit somewhere, must agree with her really.

If you think about it, a person with no mobility problems would be able to park in a car park, pay one parking charge and then walk about town from shop to shop carrying their shopping. People like us can't we have to move the car to be nearer the shop we want to go to. If we had to pay each time it would cost us a small fortune.

Tell me about the "my aunty's got that in her thumb" brigade! But you do find out which of your friends are special. Anyway I'm now more direct about saying that I have an incurable and painful auto-immune disease - which usually makes people pause before saying more stupid things.

But do keep positive as chances are that you'll be among the majority who respond well to the drugs and will feel very different in a couple of months. You may well be running marathons, not applying for blue badges! well mini-marathons anyway. Polly

Hi Rockpool

I only applied for a Blue Badge because I kept getting parking fines outside our Doctors surgery. It was too far to walk from local council car park especially on a bad day. I did have to go to local hospital for medical to confirm that I had difficulty in walking long distances and that my knees gave out. Difficult to try and explain that some days were worse than others. Still had to appeal in the end I received one. I do get a letter every 3 years asking for further form, photo and has my condition improved?

I have not applied for and DLA or any other help.

Sam xx

sylvi
sylvi
in reply to Sam59

you want too. xx

I'm only recently diagnosed and already finding that people don't understand - some do try, though. I've decided I'm not going to speak about it again to anyone who doesn't show support - its not worth the feeling of frustration, and I'll get the support I need from the few friends who are supportive and try to understand. My most frustrating moment so far, was the "friend" who said "well, you really should try to lose weight then, shouldn't you - that's whats caused this"!

Rockpool60
Rockpool60
in reply to lin256

Hi .....that is a shocker of a thing to say...and by a friend..who gives them the right to say these things..so hurtful. I am like you I have decided I am not going to say anymore..what is the point also I don't want to get upset about their lack of understanding.

take care and avoid the muppet that said that.

xxxx

sylvi
sylvi
in reply to lin256

Another person talking out of their arse again. Tell them they want to go through what you have to day in and day out then they'll change their tune. Do they think that weight gain is the cause of all illnesses. xxx

Hidden
Hidden
in reply to sylvi

My specialist nurse once said to me that if she didn't know about RA but woke up one morning with the symptoms we have to deal with every day she would call an ambulance. THAT lady understands.

KJay
KJay
in reply to sylvi

My words exactly! xx

Hidden
Hidden
in reply to lin256

Ooooo! I get this too. Even the builder yesterday felt it was ok to comment on my weight as he fitted my adapted bathroom. I wanted to say that I put on weight during years of steroids and immobility and that it was the result of RA not the cause of it. I decided I didn't need to justify myself to him in the end though.(although I have to admit, I do need to help myself a bit by losing weight).

I like the idea of saying auto immune disease rather than anything with arthritis in it though as it does open the door to the 'sore thumb' and 'at our age' response.

So far as the 'you're lucky, you don't have to pay' comment goes though, I have learned to respond with - I do pay, I pay by being disabled and frankly I would rather pay with money.

Take care

So frustrating when these people assume they know what caused our illness (specially when professionals dont know cause). My father said I got it cause I am (was) a kickboxing instructor and did too much exercise!!

Creaky

I will respond next time with your comment " I do pay".

I like your comment too Sylvi it is a pain.

Samx

Hidden
Hidden

Yes Creaky your reply is spot on! I have been very lucky with the way people respond where I live - but I think it helps to plant the idea in friends' minds and then let them go away and look it up. Generally if you google RA then you will get a pretty dark picture and pretty soon the real friends will phone and say "OMG poor you I just read about it!".

The ones who love us - family most of all - find it really hard to look up so I try now to not go on to them as it's distressing for them too and they do mostly know that it's not a great thing to have so looking at images of deformed hands and reading the symptoms and prognosis must be really hard going for them - I know I'd be really upset if someone in my family had it even before I got it myself.

If I get the strong sense that I'm going to get the OA speel then I quickly interject that it's the autoimmune disease and I'm taking a chimo drug for it before they get a chance to annoy me. Yesterday I waved my new walking stick a little menacingly as I said it and the person who had "overcome the OA" in his knee by mixing chickweed with olive oil and massaging his knee with it or some such thing - shut his trap quickly! TTx

i so know what you are all saying,i have arthertis and very bad depression and when i need people my so called friends tell me to be positive,and they have even said when they know i am lots of pain they say you" look well" my children don,t even talk about it they all wrapped up in their own lives it does get me down,but this website is great,it never moans or judges it just lets us write lol hugs to you all xxxx

Hugs back to you too...I was told yesterday that I look really well !!!!

I have had the flu now for 6 months thanks to a GP who didn't know how to diagnose it..and put it down to age and being a woman..infact I actually asked him if he thought I was a 'heartsink' patient....that shocked him. Take care xxx

Have you heard of the spoon theory, also known as 'but you don't look sick'?

Here's a link - butyoudontlooksick.com/arti...

I find it very useful to explain how you feel.

Hope this helps. kx

Hidden
Hidden
in reply to kezza

Thanks Kezza!x

I have read all the posts and just want to say a big thank you to you all for cheering my spirits today. I have work colleagues who know when I am having a bad day but other than that my sister, who I am really close to does not really acknowledge I have it ( think it just her way of dealing with it ) I find her attitude really hard to cope with as I can talk to her bout anything but if it is my RA she always seems to know someone and reels off their conditions, deformities and that I look fine!!!! I have tired of even trying to speak to her about it and as a fairly newbie to this site I am getting such support from you all so thank you!! I remember reading, some years ago about a work campaign in America in which poster mugs and other promotion stuff was sent out to all employers to educate people about RA - autoimmune as opposed to old age wear and tear arthritis. it would be good if something like that happened in the UK...... and especially if it was sent to my sisters place of work!!!

Rockpool60
Rockpool60
in reply to k3let

I think people don't understand what it feels like or how sore it is...and constantly mix it up with 'wear and tear' arthritis..If I get another healthy eating or vitamin jibe I will be hauled off and locked up :/

Seemingly it is alright for people to say things and think we can take it.

Well sorry..your sister sounds a good one...next time she says anything..ask her has she been tested for it :o take care

k3let
k3let
in reply to Rockpool60

Thank you x you too !

I have friends who tell me that RA is not so bad. I was telling a friend that I missed working and would love to go back to work. His answer totally stunned me and I was quite speechless for a few minutes. I was so flustered( actually I was so mad that I was seeing red and had to leave immediately). His reply? If you get up off your lazy duff and move and quit whining you could go to work. A lot of people work with arthritis. You just have to want it bad enough and the pain can't be that bad! Needless to say I am down a friend or at least someone that I thought was a friend!

Rockpool60
Rockpool60
in reply to salem974

That is shocking for a friend to say that to you. I really don't see where they get off in telling us what they think...I am down a few friends now..they can get lost..selfish..Karma has a way of coming around to bite them. Take care

Hidden
Hidden

Hi, rock pool, It is so sad that people have to experience RA to know how it feels, I was10 when diagnosed, and had 6 months off school then half days for a year. I lost all my best friends, because no one understood. All through my life, I would love to have been given a pound for every time someone says'you'll soon be running around' which as the years go by becomes more and more remote. It isn't easy not to be seen as a moaner, but on the whole I think those of us with RA manage to keep it under wraps and show a smile to others. Like yourself I am still the listener to friends and even family members problems, but not many know how to listen to me! This site has proved an eye opener for me at least if we are not all the same, we do have a common link. The true friends will shine out, take lots of care. Jennyxxxx

yes your not alone,most people think its an old age problem,i find it best not to say its ra,i say i have an immune system disorder which i will have to have medication for rest of lifetime

well i alway say to friends they want the pain and the damage it does no people dont understand at all i get with neighbours i have fractured spine rods screws plates rods in wrists fuesd thumbs and knuckles taken out my neighbour think i should go out and vetgetate what ever you do excercise and keep active sorry but people dont realise how much pain your in because it doesnt show on your face like other diseases im afraid just put up with it tell them one daythey might be like you probably laugh but it can happen to anyone i started when i was 5 grow out of it come 40 came back worst than before good luck rockpool60 xx

I have been accused of making it up, playing it up and just plain limping for attention. people want to see constant effects and even then they can only deal with it for so long before they shut it out and assume your just a winger. I tend not to walk anywhere with people anymore so I can walk at my own pace and not be in such pain. I have asked people to slow down but i find I have to do that every five minutes as I'm walking. It's very mentally tireing. I like to think that I have no idea what it feels like to have certain conditions so I can understand why people have such a mental block about kine, doesn't

Sadly I get that all the time, even from family as I have had this all my life so people try to understand for a few minutes or weeks but after that they just seem to not get it or choose not too.

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