relationships and RA

[rose49]

How do you cope with RA and a relationship is your partner / husband understanding and as this is something that cant be seen and we all try to cope in our own way, probably hiding a lot of what we have to cope with, are you believed when you cant for fill a full relationship because of pain or tiredness and all the physical things that go with this condition, and then you end up feeling guilty that you have let them down on top of everything else that you have to deal with, ie the affects of the medication as well as the condition. I would be very interested in any reply

[dobsey]

They say they understand but they dont How can they

The frustrating thing is explaining you cannot do certain things anymore but then they expect you to say do DIY

It is hard to understand I guess as they cannot see anything wrong with you or understand the pain level

It also does not sound bad , 'arthritis'

They have that as well in their back blah blah so no , they do not really inderstand I think life I guess

Maybe it is they need time to learn as well and experience things with you to understand

[jinirules in reply to dobsey]

I sometimes feel if I had a superpower to make my husband feel my pain maybe he would understand how much pain I am in somedays my friends tell me to be a bit assertive but I feel guilty coz I am very limited in the things I do it's also that I get upset and angry very fast my child understands it's coz I'm tired or in pain which is in many ways unfair on her but I need him to understand that I am not angry at him it's myself and intimacy is not at all there coz I am not one bit interested it's unfair on him I have told him to hang in there 2015 will be good

[rose49 in reply to jinirules]

Hi i understand thanks for sharing it helps to know so many of us are in the same boat its a condition that takes so much away, but you are right next year could be very good and that is how we must look to the future!!!

[Angela123]

Hi Rose. I feel very lucky that my husband is so sympathetic and understanding. I don't know what I would do without him. He's always there for me and takes an active interest in my treatment and symptoms. He knows I get tired very easily and tells me not to overdo it when I'm having a good day. I developed Polymyalgia a year ago on top of the RA which finally put an end to my working life at the end of October, but he's been fully supportive in my retirement. Unfortunately I sometimes repay him with irritation and snappy remarks I instantly regret, which I put down to the side effects of my various meds, and general aches and pains, but I try very hard not to! Angela x

[Hidden]

I don't think any one can understand this condition until they get it them selves .I would never in a month of sundays thought it was like it is ,but I can under stand what its like to be fit and well and live with some one that is not as I cared for my husband who had burgess disease then lost his leg to it and finally died of lung cancer, there were times when I did not understand the condition all they seem to be is conversation about illness hospital appointments ect so I think on them times and try not to push my condition on to people I suppose I suffer in silence a lot so my son dose not tier of me ,

[ShellyWelly]

I used to have a very high sex drive but being poorly means I am too stiff, tired and in too much pain to even think of things like that, so that side of my relationship has suffered an awful lot. I do feel a lot of guilt as a result.

I never hide things from my long term partner - that's what we are there for each other for, but I do still feel guilty about it. He understands what I am going through and is a real rock, he loves me and cares about me and wouldn't dream of moaning about it, but still, it has definitely impacted our physical relationship massively.

[rose49 in reply to ShellyWelly]

Shelly Welly thanks for that it helps to know im not out hear on my own, but how lonely and isolated i feel at times although i might be in a room full of people. I have only just started to be honest with my partner it is better than promising something that you know you cant give but i find it so hard as he such a lovely guy.

[windy123]

I think its important for the partner to understand what u feel and what u go through I think its important for the partner to go to the doc with you to learn more about it I think that helps in so many ways be positive

[jacquette]

I was 29 when I was diagnosed with RA and the guy I was with at the time broke my heart 2months later as he stated that "he couldn't cope with my illness"! I'm now 31 and doing really well again, my symptoms are reduced and I can lead a much more normal life. However, I am still single and embarrassed about telling a potentially new partner about my condition and have ignored the the whole dating scene concentrating on my job and my health and fitness.

I feel that this 'supposed older persons disease' can never be understood fully by the younger generation as it's not 'normal' and there is obviously no cure, therefore it will affect your future, plans and life together and that is a lot to ask of someone!

[farm123]

My first marriage breaking down had nothing to do with my disease but I know he would not have coped with all that has gone on since with my health. I have been extremely lucky with my second husband who is great with the kids (ours (14 and 12) and mine (24 and 26) from my first relationship) and me. He always knew about my health but I never expected it to spiral out of control like it has. I feel very guilty about what they have all had to put up with and not having a 'normal' mother and wife and hate the times when I have to rely on them to help me. Farm

[nomoreheels]

Third time replying, tried last night, fed up, so will keep it snappy. RD can make it difficult for partners but as long as you're honest & talk why & why feel unable you'll get round things. I find it takes planning! Anti-inflammatory/pain relief & warmth. My h has his medical issues too but after 36 years together, nearly 30 married- that helps us. Understanding & different positions is the key & when not fatigued helps too. This NRAS page is a good read nras.org.uk/sex-drugs-and-ra & this takes you to an excellent publication/download nras.org.uk/emotions-relati....

Talk,talk,talk, without doing that you risk misinterpreted signals & fear they're losing you or you don't love them since RD. Don't shut your partner out, RD affects him too!

[gwen2013]

my other half is good he understands when i am in pain, and when i am not, he can read me like a book, i do say some times i am ok, then he gives me that look, and he knows i am not ok, he will hold my hands just to get them warm,( wont let me put them on his back or belly) and as for sex, sorry lady's but i just cant get enough, i have never had to say stop, ( some times i bet he wishes i would), i think my x hubby would not have understood, so i guess i am a lucky lady, with my new boyfriend xx

[PhoebeO]

Hi, I write as the wife of someone suffering from Rheumatoid Vasculitis and, yes, it has been difficult for both of us at times, but I love him very much and hope that I have done my best in supporting him through it. He has been sooooo poorly this year and has just had his first Rituximab infusion. We are both praying that this brings him some relief and that he is able to come off of some of the many meds he is taking.

I attend hospital appointments with him, massage his feet daily as he is in so much pain with them and we talk a lot. I am very proud of him as he has battled through the pain and depression. I would be nothing without him and would do anything for him. So, yes, some of us do understand

We are both positive that next year will be a better year!!

Happy Christmas to you all xxxxxxx

[Clare-NRAS Partner NRAS]

You may find the NRAS book on Impact of RA on Emotions, Relationships and Sexuality a useful resource.

You can order your free copy by calling 0845 458 3969 or on line at nras.org.uk/publications/em...

Hope this helps

Clare

[fear-of-nothing]

thank you so much for asking this question.......I now know I am not alone or going insane that I think people are being insensitive to my condition....I am not looking for a pity party just some compassion and understanding instead of judgement of where I should be medically speaking.......as being newly diagnosed with RA this is a big problem I am facing at the moment ...just because I have been diagnosed and have a container full of pills I take daily my spouse and family think" poof " I should be all better ....they really do not get it ....I keep saying why don't you take some time to read about it maybe you will understand ....almost like they do not believe me sometimes of how much pain I am in ....I was progressing and feeling better however started again to decrease my prednisone and was down to 1 tablet and oh lord I could hardly walk and had real bad pain from my ankle up the calf of my leg...only to find out I now have a problem with my Achilles tendon now...called my RA dr and he wants to see me tomorrow and now I am back on full dose of prednisone ....and on top of that we are leaving on Saturday to go to Dominican Republic for the 2 weeks ....who I was 1 year ago I am not today ....it is bad enough the pain and frustration we all suffer but to have family and loved ones add more stress and pressure of not understanding makes me want to scream.....wishing everyone some form of comfort over the Holiday Season......and thanks again for bring this subject to the board.

[nomoreheels in reply to fear-of-nothing]

Any time you get that "nobody understands how it is" feeling Amanda just you pop on here. We do as nobody else does, you know that. Screaming on your keypad or keyboard works, it helps get the frustration out!

I know how it is reducing or trying to come off steroids & getting worsening symptoms. Because of that my Rheumy has kept me on them at low dose but I don't think it's the best plan long term really & I'm hoping she has an alternative option next visit, I'll certainly push for one if she tries delaying tactics again! I already take a weekly bisphosphonate & daily calcium/Vit D supplement to try & preserve bone density & steroids won't be helping with that.

I hope your Rheumy has some answers for you tomorrow, Achilles tendon pain is not nice, I ruptured mine a few years ago so can empathise.

Enjoy your Christmas in the Dominican Rebublic, not envious of the sunshine you'll have .....at all! Blinking chilly here on the coast this morning, time to get the ear muffs out methinks lol!! >_<

[rose49 in reply to fear-of-nothing]

Look i hope your holiday goes well and that the heat might help ease the pain but we are always hear to listen, the only way i tried to explain to my family is that it feels like i am behind a sheet of glass and everyone is on the other side carrying on with there life's and i am invisible to them they then actually listened to me, i also illustrated it on paper to give them a visual picture to look at. Let us all know about the holiday when you get back enjoy!!!!

[fear-of-nothing in reply to rose49]

thanks Rose I sure hope so ....anything is better then the damp cold climate here ...hope you have a wonderful Christmas

[fear-of-nothing]

thanks nomoreheels again for your kind words and support....I just do not like to only use this site to vent or complain...I hope one day soon I can post something happy up beat and promising to other RA suffers...I would love to be able to run the 6km a day and multi task everything like I use to ....but at the moment I have to adjust to my lifestyle I have been dealt with ....one day at a time .....I am so looking forward to the warmth and sunshine for it is cold here to and snow expected here today ...blahhhh Merry HoHO

[nomoreheels in reply to fear-of-nothing]

Hey! Please don't not come here thinking you can only post when things are positive in your life! You're doing the right thing in my view, you're adjusting but you'll get back to running, may be night I'm straight off but you'll work up to it.

Wrap up snuggly & warm against the cold of the Canadian winter til you get to warmer climes. x

[deejames]

I am in full understanding with you rose49. I have a brilliantly understanding husband but I sometimes feel he must be cracking under the strain of both helping me deal with the pain, doing the things I used to do and also doing without dare I say it ,sex. Its very hard to keep intimacy without a proper physical relationship. I hope I'm not offending anyone here but its a side of our marriage that I really miss. We tend to joke about it.

Are there support groups for supporting partners ?

[schadwick]

I haven't been diagnosed yet but every health care professional I have come into contact with expects it to be some sort of inflammatory arthritis and i have to say i am worried about this sort of thing too, i am 30 and single and it is a lot to put on to someone you have just met. i suffer particularly in the mornings lately and its getting me down as i can't see how things will improve, i hope i get the diagnosis quickly and can start some treatment but i know it will not cure it. someone who loves you is more likely to understand if you explain as best you can but someone you are just getting to know may not and may just see the worse case scenario which is bit like how i feel myself at the minute

[rose49 in reply to schadwick]

When you have been diagnosed try and find a group near you and you will be with other people who have the same fears as you, it will help you might even meet someone!

[Malwina]

Hello, it's my first post here as I've just found this special website. English is not my first language so forgive me the mistakes I am not fully diagnosed yet - I've been struggling with pain, stiffness and fatigue for the last 4 years. Nobody understands it, what's more some doctors sent me to psychiatrist to check my mental condition. Unfortunately (for the doctors) I am fine in this area Something has changed recently and the doctors started to believe me that I sometimes cannot walk or just get up in the morning. My boyfriend doesn't get it at all. He tries to be understading and helpful but he cannot understand how come I ask him to open the door for me (it hurts as hell) or lift something etc. He doesn't understand that I sometimes feel so bad that I have to stay in bed or I need to rest. He usually says "ok do it if you need it" but I see that he is not 100% sure that the pain is real. He said that he cannot take the conversation about pain and fear anymore. I don't blame him. I just think it is impossible to "feel" the same way that sick people feel. It's all so frustrating...