Hi everyone and I hope you're all having a good day today? Having started a low dose of pred just over 2 weeks ago before starting my cimzia I'm feeling lots better and it really is such a relief and I know you'll all understand how wonderful it feels to be emerging from a major flare.
Anyway, I know how difficult this disease can be for others to understand. I've long ago given up on tying to get my work colleagues to understand as I think it's making me sound a bit like a hypochondriac haha!! I've had a really tough 3 months and I have girlfriends who I chat to. My husband is fantastic on a practical level but not so great to talk to and I think he gets it as much as he ever will, so no complaints there. Anyway, as my husband isn't a great talker ...and guess what I am ... I've always relied on my girlfriends to chat stuff through with.
I've one particular friend who I see, text, talk to very regularly and we off load to each other frequently. Her about her work/husband/kids etc and over the last 3 months, I've mainly being off loading about the ups and downs of trying and failing to get onto a drugs trial, feeling crap, finally getting some good results and being offered biologics etc plus other usual girlie stuff.
Up until about a month ago I really thought she did understand. Then, a few careless comments, no malice or intention there, but I thought no you really don't get it do you. She is someone whose friendship I value but her unintentional comments are hurtful. So, over coffee one day I tried to explain the spoon theory to her and asked her to google it. I don't think she ever did google it and she sort of found it slightly amusing discussing energy as spoons and now uses this analogy herself ..ie I received a text from her today saying 'I'm having a no spoon day'. I think she completely missed the point of the spoon theory and just finds it an amusing way to describe her own energy levels. I have to say that it's really starting to wind me up now and it makes me feel cross and hurt but as I do value her friendship but think she is thoughtless rather than meaning any malice in her comments so I would like to try and sort it out.
So, any ideas anyone on how I go about this?? I know there have been similar posts in the past about thoughtless friends. I don't want to move on from the friendship as I said and would rather try to get some sort of understanding with her. I am realistic and don't try to think that I can get everyone in my life to understand RA as I know that isn't going to happen. I'm just trying to choose battles that might be worth winning and this is one of them.
Thanks
Rosie x
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Rosie_rabbit
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This is hard. I've been trying to get my friends to understand why just being started on a new med might not make everything fine. I just find that endless repetition, sometimes seizing on an opportunity helps. I have tried to spread the load, not to rely on just one person. Some (particularly people who had a long term chronic illness) understand well, others are surprisingly insensitive. I think having a group of friends to rely on, rather than just one special one has helped.
The other thing, Rosie, is to unload on us when you need
Hi Cathie, I agree and do have a wide circle of friends, some don't get it at all, some get it a bit and a few get it as much as any person who hasn't got RA ever will. You're right too in that this is the place to unload so thanks for your support x
I lost one friend but just ignore the others comments now. Also I don't go for coffee when I'm down or sore as I prefer to cope with it and hide away. One friend notices and just "pops round", I think she is the true friend, the others are fair weather friends. Really glad things are on the up though xxx
Hey Allanah how are you? It's seeming like a sad part of this disease. I do need to talk though, and talk to someone in person. I thought this person did understand but I'm wrong, I just hoped I could get thru to her but I don't think I will. She told me later today at the school gate that she had cycled over 10 miles today on her 'no spoons day' haha, I should really just try n laugh about it. Yes I'm really glad things are on the up and I should focus on that. You take care, are you any better I've not been here much so not up to date? Xx
Well got a diagnosis which is more specific at last of Fibroblastic rheumatic disease and Sjögren's syndrome. So today I started Orencia infusions which the Rheumy thinks will work better for me, fingers crossed and I also got a high dose of Naproxen which is actually dulling the pain a bit, so wait and see game again till the infusion kicks in ... Or not lol xx
And friends well ye she probably won't get it butaybe we have to give them the benefit? After all before I got RA I had no idea what it felt like even tho eight of my family have it, I thought I did , but I was mistaken .
You could also be cross with your RA and body cos you couldn't cycle today therefore it would grate on you, well that how I get very grrrrt !!
But I hope it settles soon and she does realise, we do the I'm ok thing and are good actors with RA aren't we! Xx
Sorry to hear about your situation. Personally I have now given up with those who just don't understand. I now chat with a friend who has this rotten disease we have understanding of how it is xx
Hi Miss, you're very lucky to have someone to share this with. I don't want to give up, but I'm starting to think I may have to with this one!! Thanks for your reply x
Thank you and yes a clue of people have said that to me too. I'm finding it's having the opposite effect actually as I'm just so relieved to finally be feeling better that it's making me feel really good ..my husbands very very pleased with my having extra energy too hehe!! X
Hi Rosie_rabbit, Have you ever thought about writing her a letter? you explained the current situation in very well written words so may be just may be this would be the way to get through to your friend ... just an idea. Glad also to hear your feeling good at the moment so nice to hear positive news on hear it sends out hope something we all cling on to. xxxxxxxxxx
Ah thanks Bazzy, how're you now? Yes I might try writing that's a good idea as sometime sew can be more concise when writing as I can waffle a bit haha!! X
I am still fighting this horrible cough had it nearly three weeks now driving me nuts now have a couple of weeks left before I am supposed to return to work still toying with the idea of giving it up and trying for pip just don't know what way to turn lol xx
sometimes it helps to write it and never send it too. Just to unload your frustration on paper and then read it like you were her to see if it would hurt the friendship. Some people can be self-centered but that's just who they are and we accept that.
I like what Marsha said, another idea as you seem to have many friends is to disclose to them by letter just the bits you want them to know, you may just find someone in your circle that may surprise you with their empathy. This could come as a big surprise to some of them who don't really understand what you have been battling with. Maybe include some of the booklets that are available at the hospital to help them. I'm happy your hubby is a good support to you I'm sure that's a great comfort to you
Ive now discovered two people I have known years are having tests now. I have been as helpful as possible to them and so as well as losing friends therr are friends joining the wobbly club all the time which I am sad for them but glad for me xx
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