Living with pain

As you know I have been diagnosed with RA and Ostparosas in my back along with an underactive thyroid and asthma !! Reading some of the posts on hear I seem lucky I'm not in as much pain as most of you seem to be , and I feel for you all!!

Since I've been diagnosed with RA I found people don't realise how much pain you are in ....I get up in the morning and it can take up to half an hour for me to get going properly !! Then I go put my face on 😀 and people say your looking good !! If only they could realise the pain your in ...because your not got a plaster cast or something visible they don't seem to understand how much pain that goes with having RA ... but I'm luck most of my friend are really good where I work and are understanding as are my family so I'm lucky really . But I do know a lot of people out there really don't understand RA . Maybe this horrible decease should be made more aware so people can understand how we all feel, aand then they can see how much of a struggle it is some days for us alk out there .

I know before I was diagnosed with RA I wasn't that aware of it or knew much about it, so a bit more public awareness it much needed I think .😊

5 Replies

  • It's something that's discussed on a reasonably regular basis here LIZMAC & many of us now use RD instead of RA with positive results but of course that's on a minute scale & only reaches our families & social circles. Our own NRAS do have a Rheumatoid Arthritis awareness week annually, a nationwide campaign, this year it's 15th - 21st June though if I'm honest I was disappointed how little I saw last year media wise. We see other diseases & conditions receiving publicity but not often does RD get the same attention. It's the Arthritis connection that does us no favours, people understandably assume it's Osteoarthritis & that's what needs to be got across that the two, though both joint related, are quite different, you know how so I don't need to explain but that's what needs to be "publicised". There is another awareness campaign by Public Health England which was piloted in Nottingham, my Rheumy mentioned it at my last appointment when we were discussing the advantages of using the term RD, Ruth kindly sent me a link from the NRAS site but I don't think it's been rolled out nationwide yet. It appears to be aimed at people getting early diagnosis rather than differentiating RD from OA, the which is what we believe is needed.

    So basically what I'm saying it's a moot point & we've not yet found a way to get it out there nationwide!

  • Yes, I get a lot of 'oh, my Granny had arthritis, you're young, you'll be fine,' I don't quite know how to explain the difference to them. I am slowly educating the people closest to me, and I know the education has been most thorough for them (poor dears), but anyone else? I look like I ought to be fine, so they assume I am. It's very frustrating, sometimes.

  • Isn't it just Bat! Though as I mentioned above using RD it opens the door so to speak as the A isn't used & mostly asked what is that? Depending on the situation & interest shown I'll elaborate but always start withthat it's an autoimmune condition, that tends to get their interest & usually then the questions start & realisation that it's not what they or their next door neighbours/grannies/dog has got.

    Hope today is an better day for you. x

  • Today IS better, thank you. My doctor started me on prednisone again. I took my first dose last night and let my sleeping pill fight with it to see whether I rested. I did, and it's not pouring rain, and I have hot coffee in front of me and robins singing out in the yard. I'm definitely going to talk more in terms of RD from now on, I think. Words shape not only how the listener experiences the world, but how the speaker does. I think using the more accurate terms could help me stop picking on myself for not being better. xx

  • I'm so pleased to hear that! It's amazing how we come to think of a little pill as a saviour to some degree & it lightens our mood.

    I hope you continue to feel better the nearer the better weather comes, it makes such a difference. I hope the change in term helps you too, though a disease doesn't define you it being misunderstood certainly alters the way the world does. x

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