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Rank: Advanced Member  Groups: Registered
Joined: 3/8/2013 Posts: 144 Location: Dumfries
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Hi folks
Is it just me or do others find that some people just don't understand your condition (although I have given them the booklet explaining all about it). My gripe is this is a close family member and they moan about sniffles, minor ailments etc etc. I think they are very lucky to have minor ailments and not be diagnosed with this shit condition and it makes me feel quite disappointed and down hearted in them as I feel they are being selfish.
Lisa x
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Rank: Advanced Member  Groups: Registered
Joined: 10/20/2012 Posts: 304 Location: Cheshire
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Hi Lisa,
I think you will find that most of us meet that problem on a regular basis. Sadly close family can be so insensitive, and we do expect more from them,
our family should be there for us, but sadly they can be so wrapped up in themselves.
I personally find that with my family unless I make a comment about what's happening, how I feel etc. etc. no one will ask how I am. Without friends
I would have no-one to listen to me when I feel down and fed up.
My husband who had a stroke last year and was diagnosed with dementia this year, never asked me how I am simply because he doesn't remember. But
he's my partner and I am now his carer but just sometimes I need caring for.
So sorry Lisa, best to talk only with those whom you know are interested in you and will support you. Ask it of those who can't give care for whatever reason
only makes you feel worse and angry.
Gogs xx
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Rank: Advanced Member  Groups: Registered
Joined: 9/15/2013 Posts: 125
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Hi Lisa!
I work very closely with someone just like that! She is SUCH a hypochondriac and every little thing she has is so much worse than anything anyone else has or is coping with. Just to think about the way she moans about feeling ill and "woe is me" makes me so cross!!!
I think its very hard to explain how you are feeling to such people as they really are not that interested and are as you say, selfish. Sad, but I know who I would rather be and who I would rather associate with.
Julie x
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Rank: Advanced Member  Groups: Registered
Joined: 5/2/2012 Posts: 670 Location: where the sun always shines :o
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Hello Lisa
It cheeses me off that some people don't get it - ra
I'm smiling now though because my line manager didn't get it and thought my knee replacement op meant that I was cured of ra. She left as I arrived back to work in August because she just felt uncomfortable with new & ra.
I have a nice young lad who gets it, empathy cones natural with it for him! Mother in law didn't get it - not in touch for over 7 years (I'm happy)!!!!!
Other peoples loss Hun
Keep smiling!
Jane
Xxxx
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Rank: Advanced Member  Groups: Registered
Joined: 4/24/2013 Posts: 703 Location: Hexham
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I'm fortunate in that my closest family have seen me in A&E in a massive flare up, shaking uncontrollably, spiking a temperature and shouting in pain so they know how bad it can be. But I think we all share a common problem - that our disease never goes away and for some of us that means we are always under the influence of one or more active symptoms or the side effects of meds. So whenever anyone asks the answer is likely to be that we are not alright. I am not excusing people but I can understand that they might display some compassion fatigue. I know I find myself saying I am alright when I am not! Oh if only there was a cure for RA!! Paul Barrett
Hexham - Northumberland - Loads of spectacular walks - all I need now are the joints to go with them! :)
Enthesitis (2012)
Ulcerative Colitis (1990)
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 302
Location: Rainham Kent
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Maybe in 2014, Some hope!!
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Rank: Advanced Member  Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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We had a long discussion on here about people not understanding RA a while back and came to the conclusion as soon as Arthur as some fondly called it was mentioned, they just think it's the odd ache and pain,
from memory I think we agreed Rheumatoid Disease is a better description
personally I don't bother trying to explain to people I don't know know, I feel it goes straight over their heads
my family and close friends are up to speed with it, made them read NRAS literature when I was newly diagnosed and my Hubby came into Consultation's with me.
Suzanne
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Rank: Advanced Member Groups: Registered
Joined: 4/24/2013 Posts: 703 Location: Hexham
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suzanne_p wrote:... and my Hubby came into Consultations with me.
Suzanne That's a REALLY valuable approach because dealing with this disease is a joint effort. And just as I struggle to remember the things I have to ask the consultant so I forget some of the things I am told! (It's an age thing. So My wife always comes in with me. Paul Barrett
Hexham - Northumberland - Loads of spectacular walks - all I need now are the joints to go with them! :)
Enthesitis (2012)
Ulcerative Colitis (1990)
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Rank: Advanced Member Groups: Registered
Joined: 3/8/2013 Posts: 144 Location: Dumfries
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Thank you everybody yet again for coming to my rescue.
It is quite a lonely journey this and am so glad I can come on here and get all this advice and other's experiences. I find that the anxiety of the unknown with RA adds extra pressure too.
I hope you all have a peaceful Christmas and can enjoy the festivities.
Thank you so much yet again.
Lisa xx
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Rank: Advanced Member  Groups: Registered
Joined: 10/25/2013 Posts: 83 Location: warwick
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know just how you feel , people just don't get it , and they say they get a bit stiff sometimes too.. I just want to punch them !! I hate being asked how I am , if I actually tell them it sounds like I am always moaning and so I end up saying I'm fine when I'm not . thank goodness for this forum 
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Rank: Advanced Member Groups: Registered
Joined: 4/24/2013 Posts: 703 Location: Hexham
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Paul Barrett wrote:suzanne_p wrote:... and my Hubby came into Consultations with me.
Suzanne That's a REALLY valuable approach because dealing with this disease is a joint effort. And just as I struggle to remember the things I have to ask the consultant so I forget some of the things I am told! (It's an age thing. So My wife always comes in with me. I have only just realised what a truly terrible pun that was - a joint effort Paul Barrett
Hexham - Northumberland - Loads of spectacular walks - all I need now are the joints to go with them! :)
Enthesitis (2012)
Ulcerative Colitis (1990)
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Rank: Advanced Member Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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ha ha Paul, just logged on and had to read this twice .. lol, well a joint effort sounds good, and if our joints work even better  Suzanne
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Rank: Advanced Member Groups: Registered
Joined: 4/24/2013 Posts: 703 Location: Hexham
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suzanne_p wrote:ha ha Paul, just logged on and had to read this twice .. lol, well a joint effort sounds good, and if our joints work even better Suzanne Well if I have given you a good laugh then my work is done! Paul Barrett
Hexham - Northumberland - Loads of spectacular walks - all I need now are the joints to go with them! :)
Enthesitis (2012)
Ulcerative Colitis (1990)
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Rank: Advanced Member  Groups: Registered
Joined: 9/5/2010 Posts: 185 Location: Lowestoft, Suffolk
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Quote:I have only just realised what a truly terrible pun that was - a joint effort Think Paul wins 'Pun of the Year' whether he intended it or not. I remember the discussion about renaming RA, as soon as someone hears 'Arthritis' they assume they know all about it. Still want it to be Systemic Immune Dysfunction but only for the initials - SID. Angie Be yourself - everyone else is taken. XX
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