Whats Arthritis Mummy?

woodbon

I've been thinking again :shock: :shock: . One of the subjects that often comes up when they are first diagnosed or even getting early symptoms is shock. People don't know that arthritis has many forms or that its no respector of age. If someone elderly wakes up with a sore knee or hands the reaction of there carers and the person themselves is 'Its just a bit of arthritis, it comes and goes at my/there age' reinforcing the myth that arthritis is an 'elderly persons' problem. Would@nt it be nice if information could be found easily in the community to inform people and make them awhere that they should get help from gps ect and also meet others with similar problems. Having leaflets in libraries ect. I'm not really sure but if I think it could help. Or do you all think I'm going compleatly mad :shock: Love Sue

bailey27

YES YES and hhmmm YES!!!!
totally agree with you.
I find it very frustrating. Even when I talk to friends about my arthritis they often say " Yes I get that someimtes too" or yes my GP told me I had arthritis once.

I would think, Oh ok so you have to take nasty tablets that often offer their own problems; you also struggle to get out of bed in the mornings; your joints swell up and get so painful that you can't even make yourself a cuppa; you wake up at night with burning pains and often can't even get to sleep...... well I am having a rant but it makes me quite angry at times the ignorance of some people when you exlain to them you are having a difficult day.

I think a lot of people my age (29) , well all ages just don't understand what it is. The is a lack of information out there. When I was told I had arthritis I was like them and thought it was an old people disease and thought I would end up like my aunty in a wheelchair with RA. I don't have that type so hopefully wont but a lot of my worries were to a lack of awareness.

joyful164

bailey27 wrote:

YES YES and hhmmm YES!!!!
totally agree with you.
I find it very frustrating. Even when I talk to friends about my arthritis they often say " Yes I get that someimtes too" or yes my GP told me I had arthritis once.

I would think, Oh ok so you have to take nasty tablets that often offer their own problems; you also struggle to get out of bed in the mornings; your joints swell up and get so painful that you can't even make yourself a cuppa; you wake up at night with burning pains and often can't even get to sleep...... well I am having a rant but it makes me quite angry at times the ignorance of some people when you exlain to them you are having a difficult day.

I think a lot of people my age (29) , well all ages just don't understand what it is. The is a lack of information out there. When I was told I had arthritis I was like them and thought it was an old people disease and thought I would end up like my aunty in a wheelchair with RA. I don't have that type so hopefully wont but a lot of my worries were to a lack of awareness.

Hello Bailey27

You are very young to be suffering with arthritis, but then again, even younger people have it, so you are not on your own. When I use to go and have my MTX injection at the hospital, before I went solo, there was this lady in a wheelchair. All of her was twisted in some way or another. Her fingers seem to be all knotted and held in awkward angles. She started MTX quite late in the process of arthritis, even though she was very young when she wasfirst diagnosed, but thought she just had to get on with it. Probably because her mother use get on with it. It's just one of those things.
When I saw her each week, I kept thinking, I hope I don't end up like that. My OH said, "If you do, I'll help you and push you" Isn't he sweet?" :roll: Anyway,I'm 65 soon so it is normal for me to get it at my age, I feel so sorry that you will have to cope with this condition for so much longer. You are very brave.

joyful

page35

Hi sue yes a very good idea,
i have RA and am 33 so if i tell anyone (which i dont very often unless i have to) that i have arthritis they normaly say "your young to have that" or "my grandad has that in his big toe" or something that tells you they dont have a clue, but neither did i untill i got it.
more info, more availible would be great.
Page

mistywillow

collywobble wrote:

Totally agree. Someone said to me recently "welcome to old age". If I'd had the energy I would have slapped him (I'm 52)!!!!

Even friends and family don't fully realise until you sit them down and explain in detail what it's like.

I suppose most people with a particular illness go through the same thing. My friend has diabetes, and until I met her, I thought it meant watching what you eat, and taking insulin. How wrong was I?

It would be nice sometimes if people thought before they speak, rather than come out with some platitude that makes you want to scream!!!!

Hi all
Whilst I agree with all you have said about getting as much information out there as possible, I truly do not believe anyone, however empathic they are can understand what it is like to be in constant pain unless they have it themselves. That is why we all gravitate to and love this site. It is the one place where everyone understands what it is like. We can accept comments from each other because each of us struggles to be as normal as possible despite debilitating pain. I have wonderful friends and family but I really dont talk about what is going on with my RA etc because i would probably be irritated by anything they said about it. Too much sympathy and fuss would annoy me too little might upset me. I dont think they could win, so I prefer to keep it to myself and when i do feel i need a moan this is the perfect place for it.
When I am out with friends etc I do not want to talk about arthur. Its bad enough living with him, im not b....y taking him out with me as well.

Gillx

livinglegend

Having plenty of information 'out there' could be a two edged sword.

How often have people had a day off work and claimed to be suffering from a 'touch of flu, so I was too ill to come to work'? If you have the flu; you do not walk around after a few hours, no matter what type of medicine you take. You are in bed for several weeks, anything less is a cold. But, calling it flu makes it sound more severe and hence a better excuse.

How long would it be before, 'I had to have half an hour off as I had a flare up, honest'? Would we be prepared for the queue at the GPs or A&E from people who would claim, "My finger/toe/neck hurts and I felt a bit tired this morning, I must have severe arthritis as I read it in a leaflet".

It would be a real balancing act to get the distribution of information at the right level. Medical professionals who are conversant with the problems we face could be more integrated, while sufferers can only do their best by informing relatives/friends on what arthritis is about.
The days when it was considered that a disability was a curse to be hidden away are long gone. So, cheer up.

Arthritis is a part of my life and people take me as I am. I don't let them do otherwise!

Joseph 8)

katherine810

oh yes, i've had the 'i have arthritis sometimes too' speech before. I then just give up trying to explain that it's maybe not the same thing...

The 'your too young to have arthritis' talk gets old pretty fast..

At least we're not alone?

Love
Katherine
x

lesleygraham

Hi folks
A friend who also suffers from RA told me (before I got it) that unless you have it people don't understand. She said that if you had a gaping wound on your arm for everyone to see they would be far more compassionate and sympathetic, but because you can't see arthur or the pain they assume you are ok. I now fully understand what she means and I find it very upsetting when people say the most inappropriate things. "Oh it's awful, I've got it in my little finger" I want to scream at them!!!!!!
I think the truth is people rarely understand unless they have it.
Rant over.
Take care
Les

ramummy

I'm 32 and have RA too - people just don't seem to understand that it isn't necessarily an old persons disease.

I was terrified when I was diagnosed becuase I thought I'd end up in a wheelchair all twisted and contorted - fortunately my rheumys have treated my RA aggressively and I was put on methotrexate within 3 months of my diagnosis last year.

I have found the information provided by ARC a tremendous help - my rheum department has loads of their booklets available for patients but you can order them online too.

http://www.arc.org.uk/arthinfo/patpubs.asp

Ju x

c4thyg

I'm still finding it hard to deal with these thoughtless comments and was really pleased to find another thread here with some come backs.

I think Joseph is right and educating the public could be a double edge sword. I really don't know what to think.

I still get upset by the comments like 'I've got a bit of rheumatiz in my finger' and usually say 'I think my left elbow and shoulder are still ok'. It's now so extensive that it's quicker to name good joints!!

As for 'do you HAVE to limp?', well what can you say? Maybe, 'not if I used a wheelchair'.

I know that people don't understand unless they've gone through it but still, a little compassion from those close to you would be expected. I've got a life threatening blood condition as well and my mother in law asked my hubby, 'So is she dead yet?' :shock: :shock: Needless to say we don't talk any more after 2 years of hurtful remarks like that one.

I think there is simply a lack of tolerance in society today, about anything, and it is down to the individual to try and be more understanding, that is if they want to be!!

suzster

this is a great subject, it is so true that people don't understand or have a clue how RA feel unless they have it, but then i to very rarely explain how i feel for fear of being labeled a moaner or complainer, i get asked how i'm doing and my answer is almost always 'oh i'm ok' or i'm abit achey but ok'
i think if i said how i actually feel it would take forever!!
i think that people. health types who are involved in our care could be more helpful. i like many women started with RA after i had my 2nd child, but id it is common then why don't health visiters offer more support? i know they are busy and i have great respect for them, but i still cannot believe i'm the only person in my town that has RA.
also i find the tiredness hard, if i say i'm knackered (like i usually am!) the responce is 'so am i' i wish i could get people, my oh included to understand that the tiredness related to RA is very different to that of someone who had a bad night!!!
any way, rant over, i do think it wouyld be hard to get people to understand without them thinking that every achey joint they get is arthur!
but maybe awareness does need to be improved, i did find an online shop that sells some fantastic slogan t shirts for arthur, if only i was rich i'd buy them all!!
sue

debatat

I get so frustated that because I am young (37) I must be fine and that only elderly people can be really sick with arthritis. I used to go swimming and would be lapped by people twice my age. Arthritis is no respecter of age. Public education would be a good thing but I do think RA is one of those things you don't understand until you have it. I have to be honest and say I only appreciate how hard it is because I have it. I feeel like I am ranting!!!!!! It is something that is really bugging me at the moment, can you tell!!! Thanks for this thread, I agreed with everyones comments.

Deb x

noeltone

AC has lots of information and in my experience it does help and is given to newly diagnosed by rheumy nurses as often peeps get a diagnosis and then told to go away with no info about the condition and see you in six months . I got it first when I was young at 13 when there was a lot naiviety around as the treatment included traction leg irons in being confimed to hospital beds for weeks on end and being given cod liver oil and whilst not knowing anyone else who had anything similar did not help. Today I think there is more awareness and help (support groups helplines and of course discussion forums) about the condition but until you have it others dont appear to understand although some do try to appreciate what it is like.
My brother says oh ive got that but he can still work on the roads doing roadworks wheras i suffer from holding a book etc and most of my family thinks im lazy but they dony understand they should be made to wear that suit AC have which simulate living with arthur then perjhaps they would know what its like and not say Ive got that.



etc.

debatat wrote:

I get so frustated that because I am young (37) I must be fine and that only elderly people can be really sick with arthritis. I used to go swimming and would be lapped by people twice my age. Arthritis is no respecter of age. Public education would be a good thing but I do think RA is one of those things you don't understand until you have it. I have to be honest and say I only appreciate how hard it is because I have it. I feeel like I am ranting!!!!!! It is something that is really bugging me at the moment, can you tell!!! Thanks for this thread, I agreed with everyones comments.

Deb x

frogmorton

Hey Chrisov
What suit is that? Is there one really?
Toni x

noeltone

Hi toni a few years ago now Arthritis Care and some scientists got together and built this suit that medical people etc could wear and it was made to imitate what it was like and felt like to have OA I expect they still have perhaps Bob or someone like a moderator on here could tell us more about it?????

joyful164

livinglegend wrote:

Having plenty of information 'out there' could be a two edged sword.

How often have people had a day off work and claimed to be suffering from a 'touch of flu, so I was too ill to come to work'? If you have the flu; you do not walk around after a few hours, no matter what type of medicine you take. You are in bed for several weeks, anything less is a cold. But, calling it flu makes it sound more severe and hence a better excuse.

How long would it be before, 'I had to have half an hour off as I had a flare up, honest'? Would we be prepared for the queue at the GPs or A&E from people who would claim, "My finger/toe/neck hurts and I felt a bit tired this morning, I must have severe arthritis as I read it in a leaflet".

It would be a real balancing act to get the distribution of information at the right level. Medical professionals who are conversant with the problems we face could be more integrated, while sufferers can only do their best by informing relatives/friends on what arthritis is about.
The days when it was considered that a disability was a curse to be hidden away are long gone. So, cheer up.

Arthritis is a part of my life and people take me as I am. I don't let them do otherwise!

Joseph 8)

Hi Joseph

I do so agree. In the two years before I had to retire on the grounds of ill health a year early, I was in constant pain but tried to solder on. I was so angry about some of my colleagues who phoned in to say they had the 'flu' so they were going to stay in bed a couple of days so they would be fit to go on holiday the following week. You can guess the rest. Then it was left to me to do their jobs aswell. Then, if I was away for anything and it was possibly taking a day off to go to the hospital or just staying in bed to try and get some sleep after several bad nights and so on, I would get into trouble and have to go through an inquisition as to why I was taking so many odd days. It was thought suspicious.

In the end, when they all saw the final confirmation of my condition, they seem to bend over backwards to help me. They had to.

When I think of my mother and my nan and all my aunties, they all suffered arthritis. They didn't have the medications that we have now. Not so much was done for it in those days (40's and 50's).
It was a case of suffering in silence. I feel so guilty now knowing what my mother must have gone through.

joyful

woodbon

Hi First of all, thank you everyone for your comments, its great to know the views of so many people. I neve guessed I'd start such a discussion!

Of course, as with any health condition its up the the person who has it who they tell or choose not to tell. We are all individuals and have our own methods of coping.

My idea is to get just a little more information to people in general. So they may pick up a leaflet at the library or doctors which gives very brief details and how to find out more. Also, we do have problems with employers not understanding, but how many people responsible for personnel know what it is. Maybe thats why they think its a way of getting extra time off because they simply have never come across a person who is young and suffering. I myself started a new job, and their was someone who I never met as she was on sick leave with fibromylgia (sp). Months later, she came back and I was talking to her in our break time and she explained to me what she had and how it affeced her life. I felt awful, because I never knew a conditon like that could suddenly come to someone young and healthy. I thought she was 'swinging the lead' . Yet I had been working with people who had MS and other neuro conditions, I didn't understand arthritis and young people.
You can guess how awful I felt. When she had to leave it was all kept quiet , no usual collection just a job advertised one day. Anyway thats enough of my wandering thoughs :shock: . I reall will think about this and do some 'research locally to see how much people do know, Thankyou again Love Sue

c4thyg

Sue,
I've just been through the same sort of thing in work. i was sacked 2 weeks ago because I couldn't prove that I would never relapse again. :shock: :shock: I have a heart so I can't prove that I will never have a heart attack either. My security card was taken off me and my manager hasn't even bothered to email me. I haven't heard from anyone except one friend who I confided in. It's like I never existed. I can't believe how badly it was handled. It's left me in a state of shock and wondering if I'm employable or not. My confidence has been destroyed in the last 2 years and now I don't know what to do.

noeltone

When I left work I never recieved any thanks for many years service all they thought about was hes getting a pension at 42 he got his accident compensation and that was family as well AC are trying to educate employers about arthur and the condistion and how it affects people wec an all play our part in educating but it will take yonks I had a works number it was 71026 and it said 71026 has retired on an ill health on the records????