Lazy husband who just goes along with the ride instea... - NRAS
Lazy husband who just goes along with the ride instead of looking up the wifes RA disease and finding things out for himself?
Getting people to understand our disease can be very difficult especially loved ones.
We find RA extremely hard to accept so perhaps when you accept what is happening perhaps your husband will to. If this is not the case then I apologise for presuming this to be the case.
I am very lucky to have a supporting husband and family, I think my husband accepted my RA before I did, seeing me in so much pain was soul destroying for him, and possibly for many others too. People close to us sometimes feel useless and just think we will get better.
Taking partners to hospital appointments with us can also be good, it helps them get a better picture of the disease and if you have a good consultant he will explain to them for you in a much better way than we can.
Getting leaflets and booklets from the NRAS is also good, leaving them around to read, or even showing them this site.
On the other hand some people just don't want to know about the disease, they tend to turn a blind eye if it doesn't affect them directly, and until something like this does affect them then they will never truly understand .
Take care
mand xx
I think mand is right, could you get him to come to your next hospital appt? He needs to know how you need him. Having said that, my father found it really hard to go with my mother but was supportive in his own way. Is there a way in which you can point him to the things he is doing right? If there are any!
He also needs to know when to help and when to stand back. Not easy
Xx
My husbands amazing but after having RA for 18 years, I recently asked him for a definition! Haha! He was caught out good and proper! 'Its your joints' he said. When pushed further he didn't know it was an auto immune disease; my fault as I probably never told him. But he has looked after me without question , never making me feel like a burden on my worst and best of days even though he has a busy pressurised job, so I forgave him!
Marie
HI Edie, I can relate to this sort of, when I was hit with my first flare Jan this year, I woke up in night and couldn't move with my 6 week old baby lying in her cot beside me, I rang my husband who was working a nightshift, he came home to find me crying in pain and worried about baby waking up and not being able to lift her, this was my lowest moment, my husband sat on the bed, head in his hands saying 'I don't know how I'm going to cope if your going to be like this', he rang A&E, got some strong painkillers for me and went back to work!!! I think he was in complete denial.
For days after he was very detached but then out of th blue one morning he came in to bedroom asked if I was okay and offered to massage my legs!!!
I remember thinking OMG who are you and what have you done with my husband, I never said anything but found out later what had changed.
During his nightshift he was speaking with a colleague who's mother has RA, she explained to him what it was like and how she and her family were supporting her, for some reason it took it for him to hear it from someone else but from that day he has been amazing.
I wonder if your husband doesn't look it up because he thinks he knows enough from seeing what you are going through, is he in denial? as Mand said, taking him to consultant app may help as that also helped my husband.
I also found 'the spoon theory' helpful, if you haven't read it google it, butyoudon'tlooksick.com is the site, this helped me expain to husband and son why I can't do so much and with both their help....... if they help with some chores, I get some spoons back! (you have to read it to understand 
)
Take care, hope things get sorted
Yeah, can relate to this entirely!! When I was diagnosed my husband never even commented. I gave him the literature and even picked out what he needed to read to make it easier - he read it and immediately forgot all about it. RA is just a few swollen joints in his book!!!! He came to an appointment once, only to make sure I got the meds so he could go on holiday. I was also faced, at one point, whether I was started on methotrexate or went on a 3 month holiday (he had arranged). His comment was "well you could have it when we get back". Needless to say I refused to go. A year later we went on the 3 month holiday and whilst there my right hand began to turn inward, when I showed him he said "why worry about something you cant change" - I was speechless. When I go for my appointments he never asks what has ocurred, he never asks how I am and when I am in pain or cant sleep he asks what the problem is. I am in this completely alone!!
Dear ..after 45 yrs. of being married and having 6 kids..I can really understand. I hope you have a good family to see you through this disease. If I have learned one thing in 67 yrs. is that people dont really change. Look ahead not with your heart but with logic... as the heart is a bad defence. Emotions are not to be trusted but common sense is. Follow it as the last thing we need is more stress. Everything is a problem till you get on the right medicine but it is so important to have your head clear. Thats not easy with a baby and no sleep.Sleeping is hard as i know that during the night when we even turn the pain wakes us up and then your wide awake. At least thats the way it is with me. I hate the pain killers as I feel drugged..but I can lay down when I want to and with a little one this is hard.Your hand turning inward is the ligaments pulling on them ..it happens to me also. When you have this you are aware of every part of your body and just cant help it as its your own mind trying to protect itself. Once you become used to all these new feelings mentally it gets better. I say all the time that I can stand the pain but cant stand the fear..kind of a mental zone you get in and thats a hard one in itself. Good luck dear and think of ways you can make it easier on yourself without him. Trust me on this one. Edie
Hi Edie,
I have been talking to my husband about your question, and asked what he thought. (And he has been kind enough to put his thoughts down at the end of this.)
I know, for example that many men like to be able to fix things, or make them better. I also think that many men prefer to keep emotions under tight control. Maybe your husband is keeping his head in the sand as he is rather scared of what the future might hold. Or scared about revealing how upset he really is.
I have had RA for 20 years, and often still get very angry and frustrated with this disease and myself. My OH seemed to imagine my anger was directed at him. I have really had to learn to communicate. Sometimes I used to feel “he should know how bad I feel, he should be able to guess.” But he never could. We have both had to learn to communicate clearly.
Eg. If I can’t manage something I ask him to do it for me, tell him why and thank him. I never assume he would guess what needs doing. And if I whinge about something, like pain or sickness, I start off by saying,”I want to whinge, so when I’ve finished, don’t tell me what to do. Can you just put your arms around me and say ‘Poor you!’ please.”
As far as getting your husband to read up on the disease, I am not convinced that is such a good idea. My husband knows about my particular version of RA. I think knowing the full picture of worst-case scenarios might be just too much information. (It certainly was for me, when I first started Googling!)
The remainder of this reply is my husband’s own opinion.
My OH says:
It is very difficult to articulate what I, as a husband feel, or how I want to react at any particular time when faced with a wife who is immersed in her health and mobility issues, and still feels angry. My wife has covered most of my “male” reactions, but sometimes one just has to let the situation pass over one's head and not react to her.
This is not me being lazy nor selfish or non-understanding, it is simply a self-help mechanism to say that I recognise that I cannot do anything to change this disease, and ones natural reaction to try and “fix” things will have no effect – that is frustrating and can cause personal anguish which might be viewed as being distant or ignorant. In fact the opposite is true – after 20 years of living with an RA sufferer who is very good at communicating her problems, one gets inured to those, and you start to understand that it is the mental rather than physical support that is important. So I would say talk to him and really communicate together about the situation. What his feelings are and why you react in a particular way. Third party leaflets and medical information are useful but not helpful in really understanding each other’s feelings. – After 20 years you might both find some harmony!
Best wishes
Thanks for your time in answering my question.After 45 yrs of marriage I find this a personality issue. I only being diagnosed with this 2 1/2 yrs ago...I guess I have it easy. I feel for anyone who has to raise their kids with this. Almost an impossible task alone. I just vented as usual as men are not like women and lack our feelings. I must have told him 100 times about this and he still asks the same old questions and gets it all mixed up. Bet he wouldnt get the spread on the Bears football game all mixed up lol.He is good in many ways and asks if I need something very often...but....lol...then says something so off the wall I could hit him.Thats the answer...knock him out! When men are sick..well thats a whole story in itself. My methotrextate worked for the 2 1/2 yrs. and then the stupid doctor gave me nabumatone that is relifin and I told him I didnt feel well and he made me keep taking it till I broke out in a rash. From then on everything went nuts. My body now is rejecting the Meth. and all my tests are coming out fine. So I am on nothing.No flares..yet! Usual joint pain that I never had before etc. You just know when something is not right and I find myself just wanting to stay home.With him lol. Have to have some humor here. Thanks so much and good luck to all. Edie
Sorry my previous post was brief - got interrupted. I had intended to include that it must have been devastating finding oneself in the predicament of having a baby to look after and the RA too. It has been refreshing to know that there are others coping with this disease and have a less than helpful husband - have read many comments about how supportive other husbands are and admittedly I have felt jealous!! We have discussed the RA together and it usually ends up with my hubby changing the subject or going off to do something else - subject closed. It is impossible asking him to help me and requests have ended up in arguements to the point where I no longer ask him for help so I find ways to do things in the least painful way. To be honest I have given up - I take on board what you and your husband have said Phoebe and maybe an opportunity will present itself. Thank you to you both.
I sympathise completely with this situation - I struggle to get my husband to engage with my disease or to even appreciate the things I do for him due to the pain I feel when I do them. I've had JIA for 26 years and I've always struggled to get partners to understand/empathise (I've never needed sympathy) how hard its been to grow up with arthritis and to try to fit in with society as an adult. I've had 3 long term relationships (married to 2 of them - I must like the cake!!) and none of them have been able to accept my condition. I think my "problem" is when I was first diagnosed at 14, my mother wanted to make sure I was as independant as I could be and brought me up to take as little as possible from others. It has meant I lead a fairly normal life and few people really know there's anything different about me but the downside is I find it hard to share my feelings and ask for help. I also suffer badly from depression, possibly as a result of the JIA, another situation partners shy away from.
Taking partners and family members to appointments with you is a great idea, hearing the depth of the situation from a doctor hits home how much we have to carry around with us, mostly in silence. I also agree that finding someone outside the family to talk to your husband about RA will help massively. My husband is in convenient denial - he also thinks by not helping with household chores and leaving most things to me (along with me working full time to support us financially) he's helping me stay independant. I'm currently recovering from a full knee replacement and not only have I had to go back to work early for financial reasons, but I have cooking, cleaning, washing etc to tackle on my own (and on crutches!).
I would love to have found a partner who is supportive and wants to look after me but I'm sure these men are rare! For me, I'm just going to continue as I always have - looking after me and those around me, and trying to contribute to society as much as I can. If everyone did the same, this question thread probably wouldn't exist!
To everyone out there in pain or uncertain of the future, know there's an ocean of people here to give you support or just allow you to vent your frustrations - God bless the Internet!!!
so sorry judith to hear you do not have the support you wish for at home and yes i agree thank god for this site, i am new to the site having only joined yesterday being newly diagnosed in Sept with RA i have found it to be a real help really supportive and welcoming people in the same predicaments and it really helps talking to others who know what your going through . Have you tried going to a support group in your area as well as talking to people on the site, that may get you out the house for a while and give you some you time. sending a soft hug to you xx :)Lena
