Hi Jenni, I can talk to some of my friends about it and a couple of them totally understand but sometimes when we go out for a girls night (a meal and few drinks, none for me!!) I feel a bit like a party pooper when Im ready to come away at 10-10.30pm ish!! I dont want to keep saying "im tired" all the time so it can sometimes be difficult.

Generally my friends are good but I dont honestly think with the best will in the world, anyone can totally understand this illness unless they have it themselves or is that a bit harsh?

Heather xxxxx

Jenni

I quite agree with you. Relatives, friends and work colleagues do not understand about this disease. It's almost like "oh yes I know about Arthritis, a bit of a niggle in the old knee or hand". No matter how much I talk to people about this they do not understand. Many times there have been embarassing silences and then the subject has been changed. My favourite phrase from people I talk to is "oh I don't know what to say to you".

I have been struggling at work for nearly two years now and have finally been told I have to have my knees replaced. When I told my work colleagues on Tuesday, there was final dawning on their faces that maybe this disease is a lot more serious than they realised even though they had read the NRAS booklets about RA. It is also true with my family. My Daughter has finally realised why I hate going out with her. Not because I don't want to spend time with her but the awful pain I have to put up with whilst walking and for hours afterwards.

I am not sure that we will ever be able to educate those around us about this disease and it can get very lonely sometimes which is why I love this forum for us to talk.

Jackie
xx

hi Jenni,

i find that i can talk about RA with my very best friends of a lot of years standing and they do understand my pain and fears.

if i talk to what i would call more aquaintances i.e. neighbours, people i know in my local shops etc. they say ohh yes i've got a bit of a painful knee it's giving me jip and so on,

so i prefer to not really talk about it to these people now as i feel if i try and explain i feel like a Martyr.

fortunately i am not in the work place now so don't have that problem to tackle.

Suzanne x

I HAVE TO AGREE

APART FROM ONE PARTICULAR FRIEND WHO IS REALLY UNDERSTANDING --I HAVE OTHERS -WHO I HAVE KNOWN FOR YEARS WHO LIKE ROSE SAID JUST LOOK AT YOU AS IF YOU HAVE 2 HEADS WHEN YOU SAY HOW TIRED YOU ARE OR THAT YOU ARE NOT FEELING GOOD ON A PARTICULAR DAY.

ONE F THEM ASKED WHY I HAD GIVEN UP MY JOB AS A DOCTORS RECEPTIONIST

WITH FYBROMYALGIA/RA/SJOGRENS/MENIERS/OSTIOARTHRITIS---I WONDER WHY

IT IS EXTREMELY DIFFICULT TO GET ACROSS TO ANYONE WHO HASN'T GOT RA WHAT WE GO THRU ON A DAILY BASIS


TAKE CARE EVERYONE

CAZ XX

I do sympathise with you, our Jenni! I find that my oldest friends, ie those I have known almost a lifetime are wonderful, supportive and very understanding, despite my grumbles and gripes!! They always make sure where we go is accessible, disabled friendly and that someone stays sober to get me home!! My church friends are also very supportive. My daughter is wonderful but won't talk about RA - I think it scares her - it's as if by talking about it it will become even worse and she doesn't seem able to face the fact that it could well deteriorate. However, when we are out and about she looks after me superbly and is very considerate.

Love Jeanxx

The friends I have made through this forum are the best kind there is. xx

Oh! I do like that Mairead-H!

From my experience most people I talk to have no idea what RA is and they think it's rheumatism or sciatica.Because we look 'normal' others don't realise the pain we are in.One friend even said to me,'you can't be too bad or else you wouldn't be able to get out and about'.But I try to keep going without complaining or giving in and now if I'm asked how I am(which isn't very often) I just say 'fine thank you' and leave it at that. Even close family members never ask if I need any help,thank goodness I've got a wonderful partner,he's my soul mate and I sometimes have to rely on him a lot and he never complains. Brenda.x

Hi all

I agree completely with Caz..i have 2 heads on a regular basis...this forum has helped me mainly from just reading through with a cuppa in hand..it makes me feel happy that you are all such lovely people with helpful tips,support and understanding to those newbies like me who hasn't actually got a clue what to do in every way now!

Re friends scenario..my main friend said and i quote " well if you are going to end up all gnarly then i wont go out shopping with you as people will stare at us"!!!! Said in her completely non serious manner but actually that sentance completes my worst nightmare about this deasease...I have told a few other friends who i expected to want to chat and be sympathetic..none have,in fact nobody has bothered to contact me either which i have to say has upset me a lot.

It probably doesnt help that i dont seem to be able to make mate dates as if i have to cancel at the last minute due to sudden blooming ra onset crap then i will be unpopular and not invited out again!

I live a long car journey away from any family i have so only see them every 2 months.

My mother in law is very sweet,but keeps asking me if it's gone..? No matter how i explain..it aint sinking in! Bless...

How do i win this battle??

Any ideas gratefully appreciated..i am only a young'un (39) and feel that life sucks at the minute..thank god for my children thats all i can say!

Still the sun shines today....gotta be worth a smile don't you say?

thanks for listening.
vicky
xx