How do I explain, and be heard

I was diagnosed in December, after years of going back and forwards to the Dr. Since diagnosis things have gotten worse, none of the medication has had any effect, I have had 8 weeks off work sick, but now have to return.

I am copping, just. But my husband does not seem to understand at all, he expects me to everything I have always done, to work full time, and look after everything else. I just cant explain to him how I feel, or hoe much pain I am in. He makes me feel guilty when I cant do things, or when i cant get out of bed. When I was off work he kept telling me how lucky i was not to have to get up.

Does anyone know how i can explain it to him better

16 Replies

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  • Give him as many leaflets that you can obtain and make him sit down and read them. I hope you have some success and i know how hard it is to suffer. Take him to your hospital appointments as well. Sylvi.xx

  • Hi Lisa, I was diagnosed in May and admit my knowledge of RA prior to gettting symptoms was really poor. I knew that my husband didn't really understand the seriousness of the disease either so I asked him to read about it on the NRAS site. This gives a good understanding of the disease, treatment, etc and my husband said it really helped him. I don't know if you've already checked it so I've attached a link: nras.org.uk/about_rheumatoi...

    Good luck

    Paula

  • rheumatoidarthritisguy.com/...

    Give him this link to read and ask what he understands of it. Them tell him your exhaustion is part of the illness.

    I also, have a husband who works away during the week. But when he is home he is an early riser.I Find myself struggling to get up and much as ie says don't get up I also feel guilty for lying in bed what I only see him at the week end.. can you not go back so work on a gradual back to work. Some employers encourage this.

    Good luck

    Carole

  • I'd not seen that link Carol, It's a good one :-)

  • Hi

    I know the feeling - on the whole my hibby can be pretty good, and when he sees my joints are playing up he is sympathetic (sometimes ott), but when it is generalised tiredness or ache, he can be pretty heartless.

    I am struggling at the mo after having just recently been disgnosed with Giant Cell Artiritis (Temprol Artiritis) - went off for biopsy alone, came back cooked dinner,,, banging head which has continued over the weekend, he has been really harsh! I should have been away on Guide Camp this week - but just not possible, whether he is annoyed because he has not gone to visit friends, I don't know..

    I work full time, v.long hours and I don't want to reduce my hours - it keeps me fighting, I will not be beaten by the disease. Just seems my auto immune system is fighting - hence the RA diagnosise and now the GCA, and the potential of it attacking tissue etc - have lung probs - now down to 74%. Just want to sometimes have a really lazy day without feeling guilty! Trouble is sometimes I am my own worst enemy - 'It's easier to do things myself'.

    Sorry moan over... Just feeling a little sad and fed up, head aches, stitches sore, head numb from op, and stomache hurting from meds giving gastritis and constipation, and NO WINE!!!!!

    Nite nite - Nuttynana (Hazel) x

  • Oh Hazel, I feel for you, please take a break before it gets worse, like you say; you are your own worse enemy. I think RA sufferers are very much made of the same stuff, we are all fighters and mainly fight ourselves because we know best. But believe me, all that work will not benefit you in the end. Be kind to yourself, show the family how to fend for themselves before they have to and have no idea how.

    much peace Carol

  • Hi

    You must sit your hubby down and show him one of the links with information about RA. When my ex and I first got together I told him what I had and how it affected me, I even asked him why he wanted to be with a cripple (harsh word I know) he said it was ok he loved me just the way I was and he understood.

    Sadly, over the years I got worse and he'd moan about my mood swings even told me I was lazy. When I was on sickness benefit a few year ago he kept pushing me into finding work even though I was ill at the time. In other words he was so unsympathetic to the point of being cruel at times.

    Needless to say we eventually split up, which is why you must tell your partner exactly how things affect you.

    Hope things work out and he finally gets to understand RA and the affects of medications.

    Beth xxx

  • Hi.

    Don't give up on the meds yet. It is still early days treatment wise and can take a while to get the right mixture going. These early months and years of diagnosis are the worst but once they get the meds right for you they really can make a difference to how you manage your life.

    Sometimes I suspect that the lack of sympathy from our loved ones is not about them needing to understand the disease and how it affects us, but about their own fears, disappointments and anger.

    They do not share our physical pain but they share our emotional pain because this disease affects them too. It may be that your OH is worried about how your future is going to pan out and frightened that if you give up the fight, he will be the one who has to pick up the pieces.

    When our disease is active it is very difficult to see a future because all our attention is concentrated on dealing with the pain and fatigue in the here and now. I really only have experience of how my children react but it seems that they want me to be able to say 'this is rubbish for you as well guys and you are having to help me today but tomorrow or the next day will be better and I am grateful for what you do'. A bit difficult when I feel so @*&$.

    Maybe you could start by asking him how he feels about you having RA. It would give him a chance to talk about his own feelings and then if he seems not to understand what it all means it will be an opportunity for you to explain in more detail what is going on. Try also e-patients.net/archives/201...

    Others on this site will have had similar conversations with their partners and I'm sure that they will be better able to advise but in the meantime stay strong and take care. Judy xx

  • Thank you so much for all you comments. It has helped and given me so many good ideas, a different perspective as well. I will be sitting him down for a good chat. Thank you again ;)

  • I think the only people who really understands how we feel, are those who suffer from RA!

    I used to work full time, but now work part time as it was just too much (and recently haven't manged to work at all). My boyfriend often says to me 'It must be so nice to just sit at home and not have to work' and I say in return 'It must be so nice to be pain free and able to work full time, earn your own money and be completely indepentant, becaue i would love to do that'.

    My Mum had RA too, and as a teenager, I really didn't understand how she felt and I didn't help her enough.... not because I didn't love her, but because I really had no idea how much she was suffering or the pain she was in. Sadly she died before I was diagnosed... we would have had so much in common now to talk about now!!

    I hope things work out for you and you are able to chat to your husband and that he is able to understand.

    Caroline

  • My Nan also had RA and I understand her so much more now. You are right unless you have walked in someone elses shoes it is hard to understand. I need to answer back more to get my feelings accross

    Thank you

  • Hi when I went to see the nurse the first time she gave me lots of booklets to read has I didn't understand mush about RA ,so what I did was give them to my daughter and son to read so they could understand more they read them but it was only Monday this week that my daughter and I sat and have a talk as I was crying a lot and in a lot of pain and she now sees what it's all about and is helping more take him with you next time you go and ask the nurse to go thought a few things with him hope all goes well soon

    Best karenx

  • xx

  • Have you ever heard of the "spoon theory"? its quite a good way of explaining to people why suddenly you just can't do any more and have to stop. It should be quite easy to find if you just google it.

  • Hi i'm new to this site. I was diagnosed in August 2010 @ 28 years old, and I have still suffer from active RA. As you say my hubby doesn't really understand it either, I tried the leaflet and website route. He read all the words but it just didn't register. Slowly after 2 years it has started to sink in and he does sooo much around the house and help out with our 2 girls. Sometimes men respond to actually seeing the effects, the trick is you have to let some things just go and only do them when you do feel better.

  • Thank you, letting go is something I find hard to do, I hate being told' you cant do that because'. I have to admit when I can not do things and stop fighting the RA

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