How do you get your partner in on arthritis

LignumVitae

Hi everyone,

I have been married for 6 months, following a rather romantic whirlwind affair, to a charming chap. I was very open and honest about arthritis and me from the start, he was very accepting and has dealt well with the constant changes and adjustments that can need to be made, including me flaring up just before the wedding and making it down the aisle by the power of steroid shots! I was wondering how others share the experience with their partner. I struggle to 'hand over' responsibilities when I should and I also struggle to keep him up to date with the ins and outs of appointments and those daily changes. I find it hard to explain how I am doing sometimes...I guess what I mean is how do you include people in your arthritis? We have read the publications and they are helpful but there are times when I find it hard to keep him on board and up to date and he clearly finds it hard to keep up with what I am dealing with. I've lived with it for about 12 years, he hasn't done 12 months so getting to a place where we are both working in unison is going to take time, I realise that but what can be done in the short term til he gets used to it all? I'd be so grateful to hear how anybody else has dealt with such things.

tkachev

I long ago gave up getting my partner to help or understand how I feel. He says just ask him rather than get angry/annoyed/upset but of course that doesn't work either!

Now I just ignore him.

Elizabeth x

lindalegs

I've been married for many years and had arthritis for 26 of those years.

Days and weeks go by without me mentioning arthur then we might have a short spell where it crops up in conversations. Mr Legs takes me to hospital appointments and only if I feel the need or he asks to, does he come into see the Rheumy.

I suppose, when first diagnosed I did read books on the subject and we talked about it more but that was because it was such a devastating life change and we were both learning. You're 12 years into your illness and know what you're coping with and that's better for him as it's a gentler learning curve.

I think the best way of dealing with it is just be you. You're not a disease, you're a person and he fell for the whole of you arthritis and all.

Wishing you and your lovely man many years of happiness.

Luv,

LignumVitae

Thank you both, that is really helpful. I kind of like to feel in control so I too tend to find the 'just ask' response a bit like an invitation to shut him out. I can understand why he wants to know more, asks questions and wants to be involved/ be helpful but as you say Linda, I've been doing this quite well for 12 years, I didn't really see that he had a gentle learning curve but compared to the chaos of those early years where life seems to change at every turn almost, he really does get the gentle introduction so rather than seeing that as a negative, I'm going to work on it being the positive thing.
Thank you so much and lots of love xx

dreamdaisy

My arthritis began the year we married, 1997, and for me it's been a steady decline ever since. It's not a major topic of conversation because it doesn't need to be - Mr DD comes with me when he can to apppointments, not because I ask him to but because he wants to, actually he is quite useful on occasions 'cos I forget to ask or mention things and he keeps me on track. I did unintentionally 'shut him out' by not talking about it at all and as a result had a mini-meltdown in Easter 2011. I have been better since at just letting him know when things are not good and he is very understanding about the state of the house or the fact the laundry may be piling up. He says it's 'our' problem but I still see it as mine. I'm staggered by the fact he still loves me even though I am not much of a wife. :oops: It is important, LignumVitae, to keep those channels of communication open in order to let him know that you both need and value his support. I wish you both well. DD

valval

hi to start with he got it in the neck quite often as it was new and scary but as time has gone on he can tell when i am limping or can not get out of chair or fall asleep so much. but we have been together so long we used to lifes ups and downs and how to get along with what ever thrown at us but i do like to be in control it just the way i am val

L1985

hi hun

I havent had arthritis long enough to say hows best to handle it with partners.

When I met my partner I was diagnosed with Graves disease and I had to go to the endocrine clinic every 4 weeks and eventually needed my thyroid gland totally removing. At the time I was scared stiff as it was the first time id been 'poorly' so I used to talk to OH about all the appointments and how I was feeling nearly everyday. He didnt mean to be uncaring but he did switch off from it. It was through fear why I needed to talk about things....It was doing things to my heart and I just before my op I could feel my heart stopping beating for a few seconds then start again which was very strange and very scary...thankfully thats stopped now.

When I was referred to the Rhuemy and told OH I had been he didnt even know id been having problems with my hands as I decided I didnt want to be known as lulu and lady with the illness's just lulu. I wasnt as frightened been diagnosed with arthritis as I got used to having the treatment for graves and wrongly assumed id see the specialist and be given tablets and that would be it.

I dont tel him about every appointment I ave told him about times when they think they have a name for my arthritis. He has learnt to see when im really not feeling well as its hard not to know. The only thing I tend to tel him is if im on steroids as it makes me quiet emotional so I say to him there is a reason for it so please try to be sympathetic.

Its hard but I think its something that you will just get used to over time. My partner never asks any questions but I thought that was just a bloke thing

lulu x

suzygirl

I have been married for fifteen years and poorly for the last five. We have adapted, I talked it through to start with and he came to an appt and the consultant explained everything to him. That really helped him see I was ill and the effects it had on my body.

He prefers it if I am honest and say can you do this, that and the other rather than getting stressed over it not being done. My standards have slipped and the house isn't spotless, I don't vac every day anymore. ( In fact I can't vac anymore :oops: ) We concentrate on what is important, and are honest with each other, most of the time. Its important to talk to each other.

When I was first diagnosed I talked him to death, now I vent on the forum rather than bore him to death

I am glad you are working through this together.

elnafinn

Congratulations on your marriage, early days for you both. Probably still in the honeymoon period perhaps?

I have been happily married for 36 years in a few days time and when we were first together I did not have any arthritis symptoms. My health problems have crept up on me/us slowly. I have Osteo Arthritis. I have had a few operations with some quite long recuperation times. Hubby is considerate to a point but I shall put it this way, I would not wish him to have to "care for me" for any length of time. Ok so he helped me have a few showers after my spinal operation and did some shopping. I learned to shop on line. I also had some help from him after both knee ops. Otherwise I get back to "normal" as fast as I can. So I am afraid I am not really able to help you in your questions.

Perhaps if I was really incapacitated for a long time, he would be most helpful and see what needed to be done or do things when I asked, but I hope I never have to find out. I love him to bits but he is not good at the "helping" bit as he has never really had to do it much. He cares about me very much though, ie supporting me when I am down which is not for long, is sorry when I am in pain/discomfort and attends appointments with me. He does make me laugh a lot which makes up for a great deal.

Elna x

mouseymousey

I'm a bit like Elanfinn, its my choice I don't accept help easily. You'll find your own way. I don't really want Mr Mouse to do anything for me, as I don't want to change the dynamics of our relationship? I'm also very strong willed (as he'll tell you) I value my independence.
I've had ops and had to accept some help, and I'm sure as time goes on things will change. Being honest that scares the hell out of me.
I'm sure you will both work out your own way of doing things too. Its really me, he'd do a lot more, but I don't want him (or anyone really) to do it for me.

bubbadog

I've been married 13yrs and with my husband around 22yrs and since being diagnosed with Osteo-porosis I still can't get him to understand how extreme the pain is! he still thinks when I yelp out in pain I'm doing it for effect!! I've given up trying to make him understand! The only time he show's alittle understanding is when I'm lying on a hospital being pumped with morphine or pethadine and a doctor is talking to us!! And after being in hospital for a week or 6! When he's driving me home he says this line that makes me want to scream at him 'this is the last time your going to that place!' Does he think I enjoy being in there, away from him and my house? Does he think I enjoy having this horrible illness? No, of course not! I don't say to my body go for it give me the worst pain you can I fancy being stuck in hospital! So no I don't think there's a way you can get your OH to understand Arther unless someone invents a machine they can wear that gives them an idea how horrible the illness is!

stickywicket

I’ve read your post a few times, LignumVitae, and it seems to me that you’ve got it about as right as is possible.

We all tread a very fine line. We want our partners to be included but not overwhelmed by the stuff that, actually, has the capacity to overwhelm us. We want to share everything and yet protect them from the bad stuff. We don’t want to be banging on about arthritis all the time but we don’t want to leave them out.

‘Handing over responsibilities’ can feel like giving in. It’s not, as long as we continue to take them up again when possible. Pretence isn’t a good basis for a relationship. I have soldiered on many a time, feeling smugly virtuous, when the sensible thing would have been to explain and ask for help. And blokes do have to be asked. A woman might notice: a bloke doesn’t. Besides, hoping they’ll notice is just game-playing and unfair to them.

I’ve had years of this and I still get it wrong but a good, honest natter over a bottle of wine sorts most things out.

freesia

Hi there...

Firstly Congratulations on your marriage....xx

I'm too fairly newly married - only 1 year.... and feel SO GUILTY that I have laden my new husband with such a burden....

I Know he loves me and he is a total star, and does SO much for me, but this is NOT how life was meant to be... Well I suppose life never works as we want it too...
BUT, there is nothing I can do about the diagnosis but just get on with it and try and enjoy life.... I try and do what I can around the house, whilst trying to still hold down an almost full time job and the extreme exhaustion I feel it is VERY difficult....

Things have changed between us, but not in a bad way, I guess we both get very frustrated at times, but we are learning to live with the diagnosis which will be with us now longterm....

I just try and take each day as it comes, as ARTHUR is unpredictable and each day is different...

Love

suncatcher

Hi i wanted to say congratulations about the wedding well done you. You sound like you have a good one there.
I have had Ra 7 years and have been married nineteen years. In sickness and in health. Most of us say the vows but no one wants the sickness. My hubby found arthritis care for me and when i went on the forum he secretly logged on calling himself badger i had a few conversations with him not realizing. He wanted to find out for himself.
He does not come on anymore but is supportive as in he does not moan if i need rests. I have hospital appointments in day while he works. He has never been in with me but i like my Independence anyway. He did help me and come in the room when i had my eye problem.
I had a hole in my retina and had laser on both eyes to repair one eye and prevent any prob with other as i had a ceribul tuft which turns into a hole forming on my good eye. If things are serious he would be there.
We don't really talk about the subject If i am in a flare or need help i tell him. He understands as best he can.
Would your hubby log on here for info? I wish you the best from joannex

lindalegs

suncatcher wrote:

Hi .................... My hubby found arthritis care for me and when i went on the forum he secretly logged on calling himself badger joannex

Joanne,

Badger belongs to you then! I remember Badger. Please send him all the best from me and I'm glad to know what happened to him.

(That must have been strange talking to him and not knowing :shock: )

Luv,

Colin1

I'm getting on in years now but for us it really was for better or worse 46 years ago now and i would not change a thing. Six moths your both still learning about each other let alone Arthritis. I'm not to sure what it is your after sharing with him but an idea is show him the spoon theory you will find it on the net. We arthritis suffer's take a lot of understanding and a lot of living with.
Take care
Colin

LignumVitae

Wow, a huge thank you to you all - I am quite overwhelmed by how many of you have taken the time to post, it's amazing this forum!! I have found it really useful reading all your different experiences - the message seems to be loud and clear that if your other half loves you then you find a way to work arthritis in there either through being able to have the space to do it or including them when they and you benefit from that.

It is still early days and that makes it both hard and fun at the same time. I suppose he just has to discover that daily changes are normal and plans are just too hard to stick to but that doesn't mean life isnt fun and good all the same.

Colin, thank you so so much for enlightening me to the spoon theory. I had been trying to say those things and failing for so long - I sent it to my other half, he read it and you could hear the penny dropping...I sent it to my folks too and I think it also helped them see that there was more to it all that appointments and medicines. Once again, huge fat thank you to you all - you are my newly found band of total superstars, I'm blown away by you all. Thanks

stickywicket

LignumVitae wrote:

I'm blown away by you all.

I hope not. We'd quite like you to stay

lindalegs

I second that Sticky

Luv,