Being a partner of someone with Rheumatoid Arthritis

stbt010

Hi,

In someways I feel like I'm intervening here into a private space however I think there are others who maybe in a similar position as myself and would just like to talk.

I'm a perfectly healthy person but my wife has rheumatoid arthritis. I wondered if anyone had any thoughts on the issues, problems, solutions, highs and lows of being a partner to someone with rheumatoid arthritis?

valval

welcome as a sufferer my self i can not help you but others might be abel to help val

LignumVitae

Howdie,

You aren't intruding, you're most welcome! I think it's probably quite tricky. Mr LV has certainly struggled at times. I think giving us arthritics some space is very important now and then. It's kind of a tricky and hard line to walk. Our shouted conversation from kitchen to lounge when I asked him how he'd respond goes like this:
Be patient
Don't ask 'how are you?' very much
Listen and don't provide advice
Don't complain (ok that might just be living with me, I don't cope well with whingers)
Don't plan things without doing it together, it can just get a point blank refusal if its something that over faces your partner and there'll be something you haven't thought of- tiredness usually
Apparently it helps me to appreciate life and makes me understanding (I'm not even fishing for complements asking about the highs, I'm demanding them)
I don't judge people because I need them to accept me too. That's true, I don't

I think I might stop there, he's now worrying that he will say the wrong thing and he's already cooking for me. I hope that helps a bit. Sort of talking to an arthritis patient's other half but through the medium of me (by the way I haven't edited his responses here, it's his raw responses typed as fast as I can!

LV xx

Nicchick

I can!

My OH and some say better....has had RA after being diagnosed with sudden onset Reiter's Syndrome aged 27 - he's now 46. I have recently been diagnosed (three years ago) with PsA though it looks likely that I have RA. I have lived next door to OH for almost 6 years and fancied him since I moved nearby....I don't know how I would feel now if I wasn't ill too but I did try hard to *approach* him before I was! He thought I was merely being friendly....we both say that neither of us can really understand each other's pain despite having pain as it is so personal. We both care and worry as much as anyone would and maybe know and understand a little more about what is involved but basically we are just a couple who enjoy each other's company and happen to both have similar diseases!

Just be a good listener, learn a bit about arthritis and the meds involved and that would be enough in my book! Nic x

stickywicket

Hi Stbt010. You are by no means intruding and you have a very good point. As some of us old hands keep saying, arthritis affects every member of the family, not just the one with the label and I’m sure husbands, wives, partners and children all feel the pain albeit in a different way.

In fact, I remember a thread where it was mooted that partners/carers might have their own forum on here but the powers that be decided not to on the grounds (I think) that we who have the disease mightn’t feel free to write so freely if we thought our other halves were likely to read what we’d written. Not that there’s anything to stop them as things stand but I guess they’d be more likely to if they were also members.

I’m not quite sure whether you were hoping to discuss things with other partners or asking us to tell you how you could best help your wife. The latter would be difficult as we’re all individuals and all at different stages of different kinds of arthritis. However, if you have specific questions, I’m sure we could try.

For what its worth, AC do a publication (see top buttons) on relationships and emotions if that’s any help. http://www.arthritiscare.org.uk/PublicationsandResources/Relationshipsemotions

Nicchick

Sticky has a point there - OH has had a glance at the forum but he is so different to me and wants to just get on and not know all about developments, testing or stuff like that!

I do feel for my folks just recently though as they have been getting a lot of stick because of the pain I've been in this year - my ma especially, it must be awful to watch your loved one in pain, I can't even begin to imagine how I would feel if it was my child. Same for my son who is just now beginning to understand what is going on - why do we try to hide it from them?

Nic x

stbt010

Thanks it's always difficult to know what o say and how to say it.

arfaitis

I think if one of you have got it, then you have both got it, no matter what it is.
My wife bless her has nursed me when I have been sick, she has suffered my pain, she has been a brick and I don't know what I would have done without her.
My wife pushed me round in a wheelchair for 8 months, and she has had calls in the night from hospitals to come quickly because I was in serious trouble, she is still with me after 53 years of marriage, 40+ of them with arthritis, she is my brick, she is solid never flinches, and she says I would have done the same for her.
She is right and I love her to bits.

Arfa

ELAINE55555

Hi stbt010

I've had ra for a year and now have oa. It's been quite a difficult year and my hubby has been absolutely brilliant as have my family. I do think it is very important for you to ask How are you today? That gives your better half the opportunity to let you know how she is feeling . I personally don't say to anyone how I am feeling unless they ask as I don't want to be moaning all the time! Good luck!

ELAINE55555

I should have added in the above post that I come on this forum and moan, but I think that is allowed! Lol

jillyb1

My hubby is my full time carer having stopped work early to do so , he does absolutely everything for me as I'm wheelchair dependant : helps me dress , prepares all our meals , helps me in and out of bed , helps me to and from the loo , etc etc . He is patient and loving throughout ; most importantly he is the one person who knows me so well that he can sense if I'm " giving in " and urges me to try harder to cope , yet also knows when all I need is a hug and some reassurance . What I'm trying to say really is , if you're close , you will know how to manage together ! Jillyb

arfaitis

ELAINE55555 wrote:

I should have added in the above post that I come on this forum and moan, but I think that is allowed! Lol

Dead right Elaine, we all go through the moaning and groaning in the early stages, but we seem to get more hardier as we go along.

Arfa

stickywicket

ELAINE55555 wrote:

I do think it is very important for you to ask How are you today? That gives your better half the opportunity to let you know how she is feeling .

Which goes to show how different we all are. I've always hated being asked how I am. If I'm not bad, I'm doing stuff. If I'm bad, I'm probably doing stuff much more slowly, cursing regularly, dropping things and hanging on to the furniture for dear life.

I know that makes it difficult for others to tell how I am. Good. That's the general idea I hate life to revolve around my arthritis. If you want to help then do something that'll help but don't ask my permission.

(I am very difficult to live with )

stbt010

I am beginning to realise that having a partner with RA is not about they can't do but more about what they can.

stickywicket

I like your thinking It's a bit of a minefield.

deedeeitsme

I am the same as Sticky, I hate being asked how I am. Also I have many nights where I am up because of pain/discomfort or simply because I can't sleep and my hubby always thinks there is something wrong ie:- worried about something/something on my mind and I had to sit him down and explain that when I am up it's not because "something" is wrong or he has done something it's simply because I am in pain/discomfort and I need the destraction of tv/book to relax me.

Take care Dee x

jillyb1

Quite right , I always say " I'm fine thanks " when asked : we need to be viewed as people , not a disease ! Jillyb

stickywicket

jillyb1 wrote:

Quite right , I always say " I'm fine thanks " when asked : we need to be viewed as people , not a disease ! Jillyb

My friends sometimes ask "How are you - apart from 'fine'"