Suffering inside

I try not to get cross with People I meet when I'm out but have now been suffering with RA for just over 18 months. Even though my medication is under control at last ( MTX ) I still have Pain in my hands & feet most days which is controlled by pain killers. My point is that when you meet people you always smile say hello et, etc, because you don't want to pour out your soul so to speak about how you feel & what is wrong so I greet people butting on a brave face but nearly every time the reply you get is " You Look Well" so I just smile & pass some comment about retirement. I wish sometimes that there was something to show with RA not that you want any sympathy but that Friends & other people you meet could perhaps see how you truly feel.

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  • Hi Whiskers64,

    I am sorry to hear that you cannot really share your feelings about your RA with friends. Do you have any family member/close friend who really understands your condition?

    I feel lucky as I have a supportive family (thousands of miles away though) and an ex who is beside me whatever happens and I can speak to them about my feelings.

    Meanwhile I tend to overdo things and just put on a smile and stay quiet about my condition until it gets really bad. As my colleagues saw me crying and shaking from pain and fatigue at work I had to explain them what RA is, what medications I take (the same as taken for cancer) and how angry I am because I am not able to study/work as much as I used to. At least they don't bully me being slow or grumpy but it means they treat me 'different' or 'disabled' at the same time.

    Being 'new' with arthritis (was diagnosed 3 month ago) I have no idea how will I make new friends or start a new relationship in the future. At the moment I tell them that I have joint problems and sometimes when I'm too tired I won't be able to meet them but it doesn't mean that I don't like them or don't want to see them at all.

    Wish you all the best,

    Aggie

  • Hi EasternBunny Thanks for your reply, but I would like to say that I do have a very supportive & understanding wife of 43 years who in the last 2 years has had to put up with a lot. My grown up children know What RA is & how it effects me but unless you've got it you will never know ( if you know what I mean ).

    The point was that it's people who you know & pass in the Street or shops & clubs that I feel I would rather not spent time going on about my RA so as I have said I just smile & put on a brave face. xx

  • Hi Whiskers64, sorry if I misunderstood your post, hope I didn't offend you with my previous comment. Enjoy your day :)

  • Hi EasternBunny,

    Please, no offend taken it's nice to hear what other people suffering RA have to say after all, all opinions are helpful.

    Hope you also have a good Day. xx

  • It's a balancing act I suppose because it's not that great when people shun you or pity you because you are hobbling and looking awful either. And it's hard to believe we look well when we feel crappy so I have decided that people say this sometimes as wish fullfilment or projection - when maybe they privately think we don't look well at all but can't say this to us? Why comment on a person's appearance otherwise?

    Mind you I tell my friend who lost her son/ only child five years ago, that she's looking well because she is. That doesn't mean I don't realise she's still got this great big chasm of grief to carry around with her always - but I think she likes hearing that she's looking well despite everything she's gone through. She is the same with me about RA - full of compassion but at least if she tells me I look tired or ill or very well I know what she means by it i.e under the circumstances.

    So I try to rationalise these comments in this way but at the same time I do know just what you mean.

  • This is so annoying and hard to know how to respond when people do this. I've had a desperately hard 18 months and have found that the best way for me is to listen to friends who come in to share their woes. They distract me from how I'm feeling which I find does help with pain and frustration. And while they're talk about themselves they aren't goi on about how I need to take some weird supplement or diet.

  • I confess that when I returned to work (after nearly 7 months off) I responded to the supportive and friendly "good to see that you're better again" with a "thanks but there is no better just well maintained" which usually leads to a short exchange about what that means for me and I get to thank them for their kind words and express how helpful it is to have supportive colleagues. Many were not aware of why I was off but they are great and do little things like take something off me to carry if we are heading upstairs.

    I think the honest "there is no better" phrase is the one that has/is serving me best and leaves the door open for others to complement me on how well I am looking without dismissing my condition out of hand and then we move onto something else.

    Take care

    Ali

  • It's a difficult one isn't it. I tend not to say anything & just pretend everything in the garden is rosy. I've been so disappointed with close friends & family responses that on the whole now I say nothing. Only last Saturday I met my close & very long term friend & her husband for lunch. They both know I have RD. I was having a really bad joint day, I could barely walk. I arrived at the pub after them, they'd got high stall seats, I knew there was no way I could sit on them, so I told them my joints were really bad & could we sit at a table. My friends reply- you should take up tennis. They had a good laugh including my OH. If only it could be that easy. I was very hurt. I don't think I'll ever say again.

  • Yes we should all get an Oscar for the acting!,, ! Xx

  • I do know what you mean. But when I first got PsA I did not look well at all. I saw the pity in peoples' eyes and the momentary expression of shock on the faces of people who hadn't seen me for a while. And I hated it, it was hideous.

  • I understand where you are coming from, I have a brother who knows what RA is like and he is a godsend, he understands everything and I would be lost without his support, my other family know I have RA but to me I don`t think they understand it. At work there is no support my boss will ask how am I but before I can answer he is out the door, so he sounds like he is not bothered about my reply. I never mention my RA at work and I try to ignore it. I have a fear of having to have any time off work through illness or flare ups of RA. I will be starting another drug when I see the Rummey nurse in a few weeks and I am worried of the side effect. My hands are getting worse with pins and needles and swelling so think I need something else to help me with RA. if the side effects are bad will just have to put up with them as my work will not be understanding with me having time off. I find I cannot be honest with work about how I am feeling, sometime I just feel so tired and need to sit down, but am frowned upon, I did ask for a chair or stool to be in the kitchen just so I could sit down, but they said no! I feel if I show weakness as in needing to have a rest they will say I cannot do my job proberly. I am so busy there is not enough time to fit everything into my day.

    Sorry for rambling on.

    Take care.

    xx

  • Hi Carolsos,

    your not rambling on sometimes it's good to get things off your chest, that's why I wrote my piece in the first place. Things just seem to build up & having a good old moan sometimes works wonders also don't they say a problem shared is a problem halved. I'm just glade I'm not alone in my thinking, Thanks xx

  • Thanks for your reply Whiskers and thank you for the kind words, yes a problem shared is a problem halved.

    Hope your having a good day.

    Carol xx

  • Hi, I've recently jus discovered this wonderful community and this particular post makes me feel like I'm not alone anymore. Unfortunately I am one of the unlucky ones who don't have any family support or understanding from them. 12yrs with RA and my parents, brother and sisters still have no idea the daily hardships I go through. Unfortunately I have a family who don't really care, or want to take the time to understand what RA is. Let's jus say they still don't even know what type of arthritis I have and the usual phrase I get from them'How is your health' and my unusual reply: 'I'm well' even though I may not be cause it's jus heartbreaking to know that they really don't care enough or are interested in understanding how I'm coping with it. However on a brighter note I have been blessed with an amazing husband who makes up for all the lack of support from my parents and siblings. For the past 12 years he has been so understanding, supportive and has been my rock through some really dark days. I could not have gotten through it without him. His own life has been reduced to a much slower pace to accommodate me but not once in the 12 years has he ever complained that I'm a burden .

    Thanks for sharing your stories after all these years I'm realising I am not the only one going through this. In such a short time these posts have made me feel less isolated, and I'm not alone anymore.

  • This is a good site on here, cause you can say everything you want to say and not be afraid to say. I would never admit to my work or other members of my family how I am feeling apart from my brother. In the dark days when you think there is no one to turn to there is always this brilliant site. You are not alone Zaheda.

    Hope you are having a good day and it sounds like you have a knight in shining armour, your husband!

    Take care. xx

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