Frustrating times

Ok guys a venting moment ....

How do you get someone to understand that arthritis flares, one day it's a dull ache which you don't tend to tell anyone about because you are so used to it its 'normal' for you and the next day you feel like you are carrying ten tonnes on your shoulder that is erupting with fiery pain ? My partner is so supportive but you know that look some people don't realise they are doing where there is that alight confusion or disbelief of how it can change just like that.... I had one of those looks.... Although he is not normally the one who projects those looks..... Phew! Sorry! Needed!

16 Replies

  • Hi love.its hard for someone to understand if they Don. T have it.even if they are people with great empathy

    How can someone realise the pain and fatigue someone else is going through when we Don. T know ourselves what we will feel like tomorrow.but we just get used to it .bless ya.

  • thank you sometimes that's all a person needs to reassure 🤗

  • Bless you. Chin up love x

  • I use an example I think I saw somewhere (May have been NRAS site) that likens the pain threshold during a flare to that of a Mother giving birth. Equal to 57 del (unit) of pain or 20 bones crushing. It's said the human body can cope with 45 del of pain, however at the point of birth it goes upto 57 del, I during a flare like most sufferers you can't describe the pain. My friends around me know when I'm in absolutely agony because I go quiet and withdraw. usually I'm chatty and outgoing. I wish you well and hope you find a way to communicate your health and how no two days are the same.

  • Very hard for people to understand. They say"you look well" maybe true but inside you want to scream at their ignorance even when you've told them about the disease over n over again.My husband does understand and my sisters too but my children are too busy with their own lives and only one is considerate.

    If they had it themselves they would for sure understand

  • Have you ever heard about the Spoon theory? It is a really clear, easy way to explain why your energy levels fluctuate. I suggest you google it as it is a bit long to explain properly. Basically every day you have a different amount of spoons depending on how you feel and you need to give up one every time you do anything. When you run out of spoons you stop.

    Hope this helps.

    Good luck Sue

  • That is so interesting .I. m guna keep it and pass it on. Thank you

  • like the spoon theory - never heard of that one before x

  • You'll find the original analogy here on her site lornaisobel,

  • thanks for that It is really excellent x

  • Oh yes. I tried to have this conversation with my 20 year-old son yesterday. I said something like "Oh I'm old and pathetic" and he replied "You're not old OR pathetic. Not unless you LET yourself be!" It made me upset and frustrated because it seems to suggest he thinks it's only a lack of willpower that makes me ill! What he doesn't get - and I wanted him to understand - is that I feel old and pathetic pretty much all of the time, and 95% of the time I pretend that I don't, and don't say it, and just get on with stuff... But just occasionally I would like not to have to pretend, and would like to be able to have a little moan, and get some support... He's only 20, and I'm his mum and he's used to relying on ME, so I think I might be expecting too much... But one day...

  • One day flow, he will finally get it.


  • My husband is very supportive of me and my RA. He knows that some days I'm like the energizer bunny, up doing as much as possible because I'm feeling OK for that day. The next, I might pretty much sit in my recliner all day because of pain and fatigue. He "gets" it. My son on the other hand doesn't and doesn't want to...sigh. He's 34 and lives 1/2 a world away (in The Netherlands, and I live in Tennessee in the USA). I always took care of my mom (she always lived with us), and I was always interested in her and her care. I thought my son would be the same way with me since I'd raised him to be a caring person. But recently, he sent me an awful email stating that he really doesn't care about my illness and doesn't want to even hear how I'm doing with it. It broke my heart. The only reason I even mentioned to him how I was feeling, was because I thought he would want to know because he "cared" for me. Well, I won't make that mistake twice. I've decided that people will either care about you and try to understand, or they won't. And there isn't much you can do with uncaring people. I'm sure your partner cares for you, and maybe he just has moments of misunderstanding. Sometimes we just need to rant here, and I'm glad we have a place to go! Hugs to you!

  • Lots of love xxxxxx

  • That's sad, carotopgal. Hopefully that's just one of those thoughtless things kids say to their parents sometimes but don't really mean...

  • Oh yeah! I must admit tho I did not really understand until I got RA!! Ye my neighbour must think what, one day wheelchair, one day crutches!!

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