Having had RA for 17yrs one of the most frustrating and annoying things about it ( apart from the obvious!) is getting other people to understand it too. Even family members found it difficult to accept and understand, if I had a few good days they would somehow think I was getting better and it had gone away! If only that were true.
Like a bad bout of flu I was now recovering. I would go out on my crutches one day and perhaps a few days later wouldn't have them. But you were ok the other day they would say. Ahhhh!!
Eventually I gave up trying to explain and even now if anyone ask's "how are you" I just smile and say I'm ok thanks.
My hubby of course understands totally as he is the one who's been through the RA with me every hospital stay every operation all the good and bad days and to me that's whats important now.
If however you are having trouble getting a loved one or another family member to understand your RA my advice would be to take them with you when you see the consultant or nurse and they will explain in more detail.
I had to do that with a certain member of my family and from that point everything changed and that was about ten years ago. They have since said that I am a martyr to my RA!
It's not worth worrying about what other people think of you, unless they have RA they will never ever understand.
I would never wish RA onto anyone but just sometimes you get those people you just can't get through to and I often think oh I wish you could have it for a day then you would realize what its like! ( I know that's awful)
This is where I have been so grateful for this site, talking to people on here who know exactly how I feel is such a relief, I don't feel so alone. When someone else writes a blogg and I read it I think wow your so right and I thought that was just me.
I have seldom talked about my RA to anyone, I sometimes think they are only asking to be polite they don't really want to know how I am feeling. Some people are just so difficult to get through to, so now I don't waste my time and energy on them. They simply aren't worth it!!
mand xx
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Spot on Mand!! Then I ask myself when we ourselves find this bloomin' disease so difficult to understand how can we possibly expect a third party to have the slightest idea what we are talking about. Is it any wonder 'people don't get it?' Why should they? Where do you start? And does it really matter anyway?
I only started telling people I had RA a few years ago and have now reverted to not telling them. They don't need to know. If they can't accept me as I am without knowing everything about me then they are not worth knowing anyway!
I'm just not bothered! So long as I have my rheum mates I am fine and dandy.
Thank you one and all ... as she leaps from the soapbox into the crowd shrieking "ouch that hurt" !!
Its the acceptance that i find and sometimes still do difficult, The why me syndrome i guess its no different to someone being diagnosed with a life threatening illness only trouble is it is a life changing illness and that can be worse. You may have to quit work eventually, the drugs can alter the way you think and feel the social aspect hurts. I said to my rheummy once in a 30/500 moment how on earth can you possibly understand how we all feel unless you have it yourself, her response was i can't but i will do all i can to ease your pain
The thing is Zimmie she's right! she will do all she can to control your RA and pain.(if you have a good rheumy that is)
Theses day's there is so much more available unlike when me and Lyn were first diagnosed it was just anti-inflammatorys, steroids and may be sulphasalazine if you were lucky.
But I know what you mean about the future not knowing what it holds, we just have to take every day as it comes and hope for the best.
Yay, I am not alone!! Today one of the mums up at school recommended that I try sports massage....ARGH....can you imagine the pain?!?! I had to explain that as I don't suffer with muscle problems, that it's my joints, that they're so tender to the touch that the last thing I need or want is a pummeling! The grimace on her face said it all, I'd got it through to her at last but then I laughed and made light of my RA because she felt awkward?!
Well said Mand, I used to try and explain, but now I don't bother, for the really annoying (in work) I say you should 'google' it, because then they might see it is an 'AUTOIMMUNE' disease & it is SYSTEMIC why should I keep explaining, god I get annoyed sometimes. We have performance review 4 times a year and if you have more than 3 absenses a year (even one day counts!) 'they have to mention it' because 'they might be able to help you' my backside its just to shame you and its about bums on seats. I hardly ever miss work & always have a cert from doc, I exploded when they said it was 'policy' to mention, I was almost crying as I had to explain my meds and how slow I am now in morn to a kid is all I could call him. Then, I thought about it, and I arranged another meeting and asked them to find out exactly what their 'policy' was on staff working with a disability??? Not a peep since!!!.
Anyway, a bit away from the point. Even a major Health Insurer, cannot be bothered to find out. I have had people say to me 'oh I have that in my fingers'!!! Good god, its an inflammatory condition, I just won't bother anymore. If some one asks me how I am I say 'all things considered, I'm well' or I just say 'Great@ as I hobble to the 'printer/fax/photocopier'
Good for you Gina that's given them something to think about.
It's so frustrating though trying to get through to them.
take care
mand xx
yep the same ladies so annoyed with unsympathetic colleagues
I think people cant accept it because by nature the majority of us are self centered. ( Im sure Im the same at times) Also people tend to be dismissive when it comes to loss and suffering. Thats often because they feel helpless and powerless against it and so dont want to really accept the true cost and impact it has on individual lives. Its a defence mechanism.
I think its important for people disabled for whatever reason to speak out( not to moan or become victims) but to have solidarity with oneanother and try to identify ways to improve our situations and enjoy improved wellbeing.
Its difficult to get the right balance. I am very glad that the disability Act and associated stuff on discrimination has recently helped people with long term chronic and substantial health conditions that impact on their day to day lives.
Im definately going to use it if I need to. I have already got my employers to make some adjustments to my work because Im going to fight to work for as long as possible. As well as needing the money I really enjoy having something else to focus on.
It doesn't help when people like actress Claire King goes on TV saying she now has RA, complaining about her hands and feet then talking about her stint on Strictly Come Dancing and plugging a show she's done where she tries out pole dancing!
Hi Shelley and welcome, yes I saw that on Loose Women a while ago, and your right all she had to moan about was RA in her finger! She could have taken the opportunity to raise awareness of the disease.
I've just caught up with this as I've been to the hospital for bloods, how are you said the receptionist, not too good says I oh! she said turning away to greet someone else 'how are you' I know she must say that hundreds of times a week but if you don't want to know say something else. I no longer say I'm fine good thanks or what ever pleasentry seems to be in vogue. I'm beep, I had to explain to my ploebotimist that I was growing WBC's so I could have an op to give me the use of my right hand back she glazed over, I'm afraid I was quite rude and said I'm sorry you asked and I've told you how it is. I've never done that before and I think it's because my pain has heightened no antiTNF and I can't seem to control it.
I've just put a call in to the duty Dr thankgoodness its my own GP on today.
They might have heard I was rude and not help me.
Tricia the grumpy granny today
Oh Tricia don't worry we all have days like that. the RA does make us short tempered and sometimes we do say the wrong things to the wrong people.
It's the pain we can only take so much.Have a grump at us we don't mind! lol
I've found myself 'playing down' the RA, if someone asks me if im having a good day i usually reply 'not really but its ok', followed by 'its just my RA playing up'! JUST my RA?!? who am i kidding?!? i just find it easier on other people to play it down like its a common cold! and as for the grumpy thing, i feel im permanently grumpy! unfortunatley so do my nearest and dearest! i look at it this way, if they understand the disease then they'll understand why your in a bad mood x
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