Living with a partner with arthritis

leprawndeux

Hi,
This is my first posting, and I cannot find any forums where partners of sufferers can share their experiences, etc.

My wife has recently been diagnosed with some kind of hybrid form of RA, and while she is getting support from various directions - specialists, family and friends, it is hitting me hard at the moment, and I feel I need a bit of help myself, both to come to terms with it and to be able to deal with it.

If anyone can advise of a partner's forum, I would be grateful.

Thanks

dreamdaisy

Your poor wife - and poor you, too. Partners and spouses are often left behind/left in the dark/feel excluded, arthritis hits everyone in the family, not just the affected one. I feel for you.

I don't know of any forum for the 'supporters', as it were. Perhaps we could help you? Our spouses/partners/whatevers have lived with us and we do know and understand the effect it has on others in the family. I think it is especially tough on husbands - men like to fix things and arthritis can't be fixed. My husband has told me recently that he feels helpless as he cannot mend me. (I had a meltdown recently, I promised to talk more to him and he promised to listen better.) One of the best things you can both do is talk to each other, devise a code-word system or summat so when one needs to off-load or vent the other knows they HAVE to listen - and not take things too personally. I made the mistake of excluding my husband, not wanting to burden him - it turned out he actually wanted to be burdened. I am trying to learn to open up. It's not easy.

This is a difficult time for both of you: your lives and your marriage are in a strange transition period perhaps, much adjustment has to be made as life is not as you thought it would be, and won't be as it was ever again. This is not easy for either of you. I am so, so sorry, I hope we can help in some ways or perhaps someone else will pop up with a solution! You could ring the helpline, they are fabulous at listening and they may know of an organisation etc. The number is at the top of every page. I wish you both well. DD

elnafinn

Hi there

Welcome to the forum. You are not the first partner to start a thread regarding their OH who has been diagnosed with some form of arthritis and you will not be the last. You are not alone. Men do find it more difficult, on the whole to cope, with this kind of thing. Men like to fix things and unfortunately you are not able to do this for someone that you love.

You do need to do a lot of listening, for your wife to feel that she can talk to you, know that you will be there for her, with a cuddle and so on, feel able to tell you how she is feeling. Try to do little things for her that she is struggling with, or offer, be that one little step ahead of her. Try to be there to attend appointments with her. This way you will be more involved, know what is going on, be able to ask questions, be a tower of strength to your wife. When she may not think to ask certain questions you may be able to jump in and two heads remember what has been said much better than one. There is a fine line between being too involved though. So beware of that too.

There is the wonderful helplines that you can call on 0808 800 4050, a team dedicated to helping people with arthritis and their partners. They will be able to send you some helpful literature too.

I hope some of this helps you,

Elna x

stickywicket

Hi there leprawndeux,

I think a permanent thread for partners would be a very good thing for this forum. Partners suffer every bit as much as us (Well, my husband claims he does!) but differently and it must be hard for others to judge when to help, when to let us muddle on and when to take cover.

You may find some stuff to help you here, just by reading how things are for us but I'm sure the people on the Helplines would be a good source of info too.

barbara12

Hi
And I agree with stickywicket...we do need a thread for partners and family.
Its so lovely of you to come on here and ask for help, it really shows how much you care.
The others have said it all, but i do hope you stay with us, if only to post questions for your wife.
And dont forget to take care of yourself, this can sometime be forgotten.

Turbogran

Hi leprawndeux
So glad you have asked this question as it shows you are aware that you need help to be able to help you wife who is also trying too come to terms with it. I have had osteoarthritis i my spine for about 5 years now, and my OH (although he would not admit it if asked) has had a very hard time coming to terms with the situation, mostley I think because he didn't understand the pain I was in or how to deal with it to make it better. I used to get into really bad moods when the pain was bad and he just didn't know how to help. as someone else has said do talk to your wife about it because if you can it will help both of you to know how one another feels and wether they need a hug or wether they need to be given space and left alone. My OH and I have only just got to this stage in the last 6 months. sorry to go on but hope this has helped sending love to you both.

tkachev

Yes a partners thread/forum would be a good idea. I can imagine it is very bewildering seeing a partner suddenly in so much pain. Understanding is a key to helping.

Elizabeth

chris7

Hi leprawndeaux

Yes it must be hard to be the observer in these things and to feel a little helpless as to how best to help, especially in the early days. Others have already mentioned the helpline and of course you can continue to post here for support but I too wanted to add what a good point you raise and perhaps the webmanager can think about starting a new forum if that is possible for those of you who are sharing this ride with us?
best wishes to you both.
Chris