Grrr: Right I'm fuming, absolutely fuming. The... - NRAS

NRAS

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Grrr

28 Replies

Right I'm fuming, absolutely fuming.

The attitude of some people make me furious. Yes ok I "look well" and yes I'm young (ish) but yes I have RA and yes it hurts a lot and yes I do need to use my crutches. And ok yes I was "ok" last Thursday at work but that's because I was silently struggling, after all I'm not going to lie down and let this stupid condition rule my life well not just yet anyway.

So if you can not say anything positive then shut up please so called friends judging me grrrr

Sorry rant over!

28 Replies
sylvi profile image
sylvi

Its a right pain isn't it when you look so healthy. Just tell them to walk in your shoes for a day and see how they feel.xxx

I'm really struggling at the moment. The pathetic comments actually made me cry!

Rockpool60 profile image
Rockpool60

Some people are just thoughtless and their comments are hurtful. Have a big hug.

miss profile image
miss

Mmmmmm its not nice is it. You rant all you want it helps!!!!!!!!!! xx

fastball profile image
fastball

I know the feeling when i was first told i had the start of acute arthritis my boss at that time said should you be working. My reply was i'm not in a wheel chair yet, and will carry on in my job thank you.I was 30 yrs old then.Since then i had numerous jobs, one was on the leicester market selling childrens and baby wear which i did for several yrs. You have to shut your ears and try to ignore these people and try to carry on regardless. Hope you are feeling better .sending gentle hugs XXX

Chris

Thanks everyone. Xx

have this too rosy , cuddly, steroid glow its called in my case!!!

Rarah there is a whole bunch of them nuisances out there just waiting to give their considered opinion on you and ra.

Once they have diagnosed you (and of course your doctor, consultant and every other medic you have seen are wrong) because you are too young, fit, healthy, old, disabled...... to have ra they will then tell you how to get rid of it - great remedies from sucking orange peel to drinking cod liver oil upside down.

and they will bore you with the stories about their relative who will have had the same symptons but really all she needed was a few nights good sleep and she was as good as new.

These nuisances pop up all over the place, worst are those that come in the guise of friends. Thoughtless gits.

Three years on and they still annoy me particularly so when I feel sore, tired and as though nothing is going to ever get rid of this disease............my sympathies are with you - just try and avoid them. Any time I have tried to explain my reality their eyes glaze over and they are not interested so when i get impatient or just ignore them they say its my negative attitude that is the problem.

Take it easy tonight and look after yourself and try to put them out of your head, you have enough to deal with.

in reply to

Mads .... Had to laugh at the remedies but totally agree with what you said!

Thank you.

I heard today .... Just walk the pain off, you are 40 years my youth and I don't need crutches, you are old before your time!!!!

I've rested lots today, I wish I could say its helped..... I'm sure it will.

I'm having an enforced rest from work for a few weeks presently, I usually shrug it off when people pass comment however today it slapped me right in the face, tomorrow I have to face the unsupportive boss and inform her in off until the new drugs start. I'm sure it won't be pleasant however I've got to look after me, so I can in turn look after my child and family x

in reply to

ahhhh, just when you get a retort sorted with one they come up with another.

Oh Rarah, I came on to post a blog and this was one of the things I was upset about too. My heart goes out to you... (((hugs)))

I believe a lot of the time our friends and relatives have no idea how much their words do hurt us - they just dont see that we cant change our circumstances, and that we are living day to day because our days can either end up being good ones or bad ones. Its probably confusing

that one minute we can walk or work and the next we cant.

I think most people want to be seen as giving us motivation and trying to get us to think that we are in control of our bodies, it makes them feel good. We know they arent helping but they dont. I really think they don't want to see us in pain but they feel so helpless that all they can do is give advice.

But there are also times when people can be just plain thoughtless and nasty about what they say and even push us to help them. But I find its usually its when there is some self-motivation for their outbursts, like they want us to do something or in your case, they have to replace you which is more work for your boss... so they give us a pep talk which can at times destroy our faith in people. And it can be the way they say it, not neccessarily what they say ... then we are left feeling not only guilty, but also very alone because we know they have no idea how this disease, more than some others, can isolate you.

I'm glad you got some rest and try not worry about having time off... the doc knows the situation and thats all that matters till you are well again. Deal with your boss later and if he gets stroppy, print and give him a few articles on RA, it might just shock him to know what you deal with.

-gail

oldtimer profile image
oldtimer

I thoughtlessly complained that I cannot climb mountains any more, adding that at least I can look at them living in such a beautiful place. Someone said "You mustn't say that. You can get someone to drive you up mountains"

The lack of understanding just left me speechless. Not only does she not understand the difference between being able to do something yourself, but wants to deny me the right to complain about it.

But my answer to the people who say "You LOOK well" (hidden thought - you can't have much wrong with you) is to reply "It's wonderful what drugs can do nowadays"

jeanabelle profile image
jeanabelle

A lot of anger on here today. We all know what it's like when people look at us and make a diagnosis on the spot! These are ignorant people and many times I wanted to shout that at them!!!

This is the reason why I am taking a leaf out of the American rheumatoid sufferers...... They want the word arthritis removed from rheumatoid. What we have is not arthritis, we suffer from Rheumatiod Disease! Many doctors and scientist over there have stopped using the word arthritis when referring to Rheumatiod patients.

The minute we say arthritis everyone immediately thinks of their granny's knees or their own sore index finger!!!! Am I wrong?

We can do something about this if we put our minds to it. It takes educating people.

This site is world wide, we should use it and get the word out that we do not have arthritis, we have Rheumatiod Disease.

Down off my soap box now. But I mean it, lest made the change here to start with and in future when I'm asked what is wrong with me I will say ' yes I have Rheumatiod Disease', it's an auto amuine condition'.....and wait to see what happens next.....

bruce18 profile image
bruce18 in reply to jeanabelle

Hi, I like your thinking jeanabelle :) I don't even bother telling people that actually Im quite ill because they have gammy knees or are in their late 80's and I don't have an excuse. I agree with what you say - have you put it out there as a question? would get some good feedback then. Message me if you do because you have my backing,

Claire x

in reply to jeanabelle

Totally agree ... from now on I am going to refer to it as RD!!!!!! Lets see if the biggest site in the UK for rheumatoid can have an impact on the name of our own disease.

jeanabelle profile image
jeanabelle in reply to

Good on ya.....bruce18 has got on board too. I think tomorrow I will start a blog on this issue, what do you think?

in reply to jeanabelle

Definitely... I know Kelly at the RA Warrior website is also trying to change the name. If we all start calling it RD then I bet there will be followers.

in reply to jeanabelle

I am with the ra warrior on this one as well, jeanbelle, very confusing to have the arthritis word attached, I will start using it immediately

jeanabelle profile image
jeanabelle in reply to

Great that's a few now that have got back to me. I think tomorrow I will introduce the suggestion to the blog and see how we get on. Thanks for the support. This I a huge concern with almost everyone who has this 'disease' so I think we should get a good response. X

Riedenise profile image
Riedenise

This is happening too often,to too many of us. Is down to lack of information and Understanding out there in the general public. Like you say because we look ok , 'they' dont see the pain & hurt going on in the inside. The daily struggle we have this disease. I agree with Jeanabelle that 'Arthritis' should be changed to Disease. When people ask whats wrong with me? Why are you walking with a stick? and I say 'oh Ive got RA, you can just guess their reply, they've got ....... I then try if I can to explain its an auto Immune Disease.

Only yesterday at work ( I work at M&S, on the order desk) after standing for too long I sat down on the chair that Ive been given, to carry on doing orders for customers, when from behind me this guy shouted at me ' when you've finished having your rest, can I use the changing room!'......... Thank god I remembered where I was, otherwise I might not have a job..

You want to scream at them don't You.

Rie x

rowantree profile image
rowantree

But I have osteoarthritis in my toes, heels, ankle, wrists and thumbs. And I'm 41! Maybe I can just have osteo.

I felt really hacked off with someone the other day. He was telling me about how his young daughter had just been diagnosed with cerebral palsy (a mild case) and how he felt so devastated by this that he hadn't been able to complete a job he was meant to be doing for me (a paid job I might add). I sympathised of course and said that I too had felt devastated when my son had been diagnosed with Aspergers as a kid but it had helped us access support for him and that's what counts. He replied. "Oh - your son seemed quite normal to me!?". Its the same thing with RA - people seem to need visible signs of disease and disability before they can acknowledge it? I just call mine Rheumatoid now as the arthritis is currently the least of my problems - its the systemic nature of it and the drugs we have to take that people need to understand. Kelly Young aka RA Warrior would probably like to campaign alongside NRAS - she calls RA, RAD now I think? Tilda

Ps and anyway he had met a different son - silly by••er! X

TweeterCal profile image
TweeterCal

I was thinking of getting a T shirt printed with "I look good but I feel shit!" on the front and "I'm fighting RA" on the back! I will post a picture when I get it! Good work letting the steam out - It bugs me less now as I expect the response you have had from everyone. I also hate the mix up people make with Osteo Arthritis "Oh my uncle had a bad hip from playing golf" etc. It can be very testing and tiring...x

fizbom profile image
fizbom in reply to TweeterCal

what agood idea l'll buy one! even my nurse said yesterday if your meds were right you shouldnt get this pain! not alot of empathy there? just glad to know i can come on here and not feel so alone. xx

binlid profile image
binlid

totally agree my personell at work (i have been unable to work since august ) didnt have clue until i explained.have to see her again this week grrrrrrr hope she hasnt forgotton what she been told, i can visualise all staff looking at me saying oh dosnt look as though theres any thing wrong with her, as prevoius blogs walk a day in my shoes, i dont care anymore what peeps think sick of explaining and now put energys int getting through day .have a good one peeps

Well, eureka I spoke with the unsupportive boss yesterday. Who was quite inquisitive, so I seized the chance and explained how yes pain is a huge problem and the constant fatigue can be quite draining. How I've been having blood tests for months every two weeks, I told her exactly as it is. Her reply was how have you hidden it for so long? I cried as I was ready for a fight. However the forked tongue came springing out her mouth when she said oh it must be hard living with a old persons condition grrrrr bang head against wall moment made worse by the fact we are trained nurses!!!!

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