He doesn't understand my RA

I am finding it hard to get my husband to understand what is wrong with me and it's making me feel miserable. I went alone for my first visit to see the Rheumatologist whilst my husband was helping some old people by driving a mini bus. Whilst at the hospital I was asked if I would participate in a trial looking at compliance in taking Methotrexate, and I agreed.

I was shell-shocked by the diagnosis, and when my husband came to collect me from the hospital I didn't say much about the Consultation, but I did mention being part of some research.

He made a comment some time later which showed that he thought I was just participating in some research. We chatted about the research, but I told him that it was not just for research that I was attending the Rheum Dept. I thought he understood, only to be asked yesterday when the Trial finished and when I would stop taking the medicine and having these inconvenient blood tests.

He is such a kind and loving man and will take me anywhere and do anything for me. How can I make things any clearer to him, I don't want to go on and on about it?

17 Replies

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  • Sometimes it's easier if someone else does the talking - so I suggest you print out the NRAS booklet for Newly diagnosed people and hand it to him!

    nras.org.uk/data/files/Publ...

    Or even just page 10.

    It takes time for family to get it, but I'm sure he'll do so in the end.

  • I think that the advice from helihelix is spot on. It can be really difficult for our closest family and friends to understand the implications of this disease. You say that you were shellshocked by your diagnosis, which many of us can identify with, so it's not surprising that your nearest and dearest find accepting it difficult. But the NRAS leaflets give comprehensive information in a clear and understandable way that may help you as well.. There is also a freephone helpline if you would like to talk things through.

    It might also help to take your husband with you to your next appointment

    I hope that he can come to terms with your diagnosis, and gain some understanding of what you are going through. I feel sure that when he really grasps what you are going through, he will be there for you.

    Best wishes, I hope you find this forum as helpful, informative and helpful as I have. M xx

  • Thank you helixhelix and Hatshepsut, I find your advice and that of others very reassuring and I will ask my husband to read the recommended booklet. I think he will come to my next appointment with me. He came with me to see the Research Nurse and that consultation probably reinforced the idea of just being involved in research and not not realising that I am unwell too.

  • I especially recommend asking your husband to go with you.

  • A lot of people do not understand what this is

    My wife does not really

    You need to sit down and explain things to him as you may not have been very clear first time

    He needs to know this is a chronic illness

    Not his fault I never understood it and I think if you don't have it then you do not understand it

    Even the specialists struggle at times

    Good luck. !

  • Many couples have told us they have found reading the NRAS booklet on impact of RA on Emotions and Relationships really helpful to explain not just the "physical" side of RA. if you'd like a copy please order online or by calling NRAS 0845 458 3969

    nras.org.uk/publications/em...

  • your husband very much needs to go to the appointment with you so he can hear what you're consultant and if he has any questions you can ask. your husband needs to be with you mentally physically he needs to be your support your Husband and your friend.

    Ask your consultant for leaflets and booklets.

  • Must be lucky, my wife has been to every appointment with me and understands fully the path that we RA sufferers have to put up with. As others have said take him with you so he can start to understand and I thoroughly agree by using NRAS and their excellent booklets.

    I hope your husband starts to understand in what your body is going through, all the best for the future.

  • Hi,

    A diagnosis of RA is a life changing experience, you use the term shell-shocked which sums it up perfectly.

    It's a very confusing time, I know when Bridget was diagnosed she was relieved because finally someone had confirmed she had something wrong with her.

    Up until that point she thought she was going mad, all this pain with no explanation!

    I know how difficult it can be explaining RA, especially when you don't really understand it yourself. The hard part is, it's not simply a diagnosis, it's a life changing event, worse than that it's an unknown quantity.

    I say these things not to frighten you but to highlight the point that it's a similar situation for your husband.

    He can't feel your pain, he can never truly understand what you're going through but he can support you if you let him.

    I'm a partner and carer, I hated RA for what it did to the person I love but that wasn't really helping so I educated myself.

    I was unable to take away the pain but I could be of some use if I knew what was happening and more importantly I could be there when Bridget needed me.

    I note from your post, you said:

    "I didn't say much about the Consultation, but I did mention being part of some research"

    Obviously, I don't know your situation but as others have said communication is the key.

    Keeping him informed, involved and part of this is very important. If you feel you are unable to talk to him then use the booklets on NRAS and invite him to any appointments, explain to him how important it is to you that he attends.

    We all deal with these things differently, from my point of view I would be devastated if Bridget felt I didn't understand.

    Maybe once your husband appreciates the way you're feeling he will move heaven and earth to support you.

    Best wishes

  • Thank you Brimbles. We are away at the moment and my h is getting the message I can probably only do one thing a day. Yesterday for instance after some walking around visiting the Cathedral I began to feel dizzy and wan. He would like to have visited another attraction but I wasn't up to it. He accepted this, but I felt bad knowing he would like to have done more. To be honest I don't think he could have done more but he doesn't realise it yet!!!!!

  • I'm glad he's starting to appreciate what you're going through. These things take time, you'll both learn to recognise your limits and work within them.

    Don't feel bad, just do what you're capable of and enjoy stuff whilst you're doing it.

    Communication is the secret...

    Best of luck!

  • Maybe your h will realise things need to go a little slower now, pacing is the key..... see one attraction one day then another the next et al depending on the amount of walking you need to do. It may be an idea to sit down together & write an itinerary, work out how much you think you'll be able to do each day & include lots of breaks, sit & watch the world go by for half an hour, or have a coffee/tea break, that should give you second wind to carry on. It's possible he'll learn more from your break away, spending whole days together he should realise how your RD affects you. May well be just the thing needed for him to get how it is now for you & appreciate that given a little time to recharge your batteries will mean you'll both be able to do all you wish to do.

    Enjoy the rest of your hols. :)

  • Thank you Brimbles and Nomoreheels for your kind thoughts and advice. We are home now. We had a lovely time. We used our Camper van and everything was just that bit more tiring than at home. Using campsite showers, awkward for dressing and undressing means that with the extra walking and lack of space everything is that much more tiring before you begin. Then you have to use public transport and walk before getting to any holiday attractions. My husband has said that he is happy to do anything to make things easier for me. However we both love the freedom and outdoor life which motor homing brings. Sometimes we get taxis from the campsite to wherever we are eating out as he says he doesn't want me to have to cook.

    He has read some NRAS leaflets, and will come with me to see Rheumatologist for 2nd Consultation in July. 👍

  • Great news!

  • That sounds more positive! I'm sure he'll understand more once he's read through the literature & attended your appointment. :)

  • I can just echo what everyone else's has written, it is difficult when you are newly diagnosed and trying to understand and explain it to yourself to then have to explain it to your partner. I found that difficult but by not explaining it to him my husband felt shut out and frightened of what he did not know.

    Nomoreheels is right plan outings be realistic about what you can and cannot do and do not beat yourself up thinking you have let your husband down, better to give something a miss or reschedule than spending the next two days so tired you cannot move.

    Best Wishes.

  • Thanks for your comments. Things are a bit easier now as he came to see the Consultant with me. Sometimes I do need a bit of a push to do things, not too tiring things, otherwise it could become a way of life, never going out very much.

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