counselling

[mohikan22]

Ok.. I'm not one for talking not opening up....but does RA really mess with your mind and in turn your relationship. .. no matter how strong the bonds? I try and talk to my other half. .but it seems to me I can never get a point across about my ra. How it's affecting me. I'm considering counselling but have no idea where to start......thanks.

[farm123]

One of the main problems is that we ourselves find it hard to understand this disease and how is affects us so then it is very difficult to explain in an easy understandable way to someone else. How you can do something one day and find it impossible the next - pain here one day there another - medication side effects - finding the right medication to control you. Your rheumy nurse may be able to point you in the right direction regarding counselling. Hope you find a solution for you. Farm

[allanah]

I took my hubby to an RA meeting in Newcastle and they all noticed his emotional pain for me bring ill. They stepped in and talked to him and it really helped xx

[Chmbrln]

My GP is very understanding and she referred me for talking therapy. One thing I took from that was having it explained as bereavement. I had to accept the loss of the old me and make a new path with the new me. This may sound odd but it helps me. My husband of 30 yrs finds the change in what I can do difficult. It's not the amount I can do but that somedays i can and others I can't. I think he would cope better if it was the same every day. But that's his character

[Hobbits]

Hello. Yes it certainly messes with your mind and relationships. Educate yourself as much as you possibly can, read everything you can. I have a great relationship with a living man. When I tell him something hurts, it's usually at the point I can't take it anymore, it has to be really bad before I complain to others, otherwise I deal with my pain silently. He listens but never responds. It took me a long time to understand he feels helpless, there really is nothing he can do or say to take away my pain. I have joined a support group because I find solace in just being with other who know what I feel. It's very hard to explain RA to someone who doesn't have it, often there are no physical signs.

I told my partner the best way I can explain it is for him to remember the day after he did construction work, he was so sore he couldn't move. That's how I feel most days, but the pain in in my joints, not my muscles

The hardest part is trying to make someone understand chronic fatigue, now that's difficult.

I don't want to contstantly complain about my hurts to my partner, yes he's there to support me but everyone has thier limit. A support group can take some of that out of the equation. I have made great friends with others in my group.

I think the hardest thing is the feeling of loneliness when you feel no one understands you. It's unfair to get angry or sad at your partner for not understanding because they are a seperate person and do not feel the body betraying you, like you do.

I think it's great some have really supportive partners, but every man and woman partner is different, everyone has different capacities to cope, so I didn't get mad at my partner, instead I reached out to a support group and found what I need. This website is a great tool because everyone has different experiences and there is sure to be at least one person who understands your particular issues.

I say give counciling a try. If your asking about it, you probably already know you may need it. A lot of groups allow partners ( some don't) as others want confidentiality. I go alone, it's something I have for myself, to help myself. My partner can't save me or take away the pain, it took me a bit to realize this and not expect this. If my partner had RA and not me, I would want him to find a support group to help him cope emotionally...a partner can't do it all, all the time, they have a life to outside of RA.

I hope this helps, it's just my take on things. I will say my relationship is only just over a year old, I was diagnosed two months after we met, and he is still hanging in there. I wonder if relationships that are 20 years old handle things differently. I found in my group couples who have been together a very long time, stop talking to each other, that's the biggest complaint I hear at group. Do whatever you need so you don't feel alone, I think this allows you to cope better which makes life a touch easier, especially on the really bad days.

[Hobbits in reply to Hobbits]

Oh my!!! I meant loving man!!! ( he is living too)

[Glyn612 in reply to Hobbits]

Hi Hobbit, it's brilliant of you to take time out to reply at such length and in such detail - love the "living" man bit (ha ha!). You mention group counselling - is this on the NHS? If so, how did you find out about it? Thanks

[Hobbits in reply to Glyn612]

I am actually in Canada and not the UK.

I asked my Rheumy about a support group as I already checked The Canadian Arthritis Society to no avail. My Rheumy didn't have any other suggestions.

A friend of mine happened to see a poster up on the wall at her doctors about Chronic Disease Support Group and told me about it. I was quite surprised my GP or Rheumy didn't even know about it.

I joined and haven't looked back. It's a group open to any with a chronic disease such as RA, Lupis, Fibro etc. we meet once a week.

[mohikan22]

Thanks all. Hobbits. That's a cracking insight and almost exactly like myself.thank you. I'll see if I can find something near me and give it a go. ...

[Hobbits in reply to mohikan22]

I hope you find a group! Good luck!

[Hidden]

I'm same way as Hobbits and Chmbrln in that my husband just blocks me if I refer to to pain more once in a while. I think the only reason I used to try was because I thought he'd assume that if I didn't mention it I must be feeling better.

The only time we've really fallen out has been over medication because he can't help but notice the changes these bring for me and not in a good way (i.e the sound of throwing up or rashes on my face and body or being so dizzy I'm unsafe to walk let alone drive) so he then gets cross with my medical team for pushing them onto me and with me for agreeing to take them and that doesn't help at all.

I do have a counselor now (GP referred me last year when things were very bad) and she has helped me in a number of ways, not least by pointing out the reasons why my husband appears so unwilling to listen to me describing pain - even occasionally. He also feels that if he gives an inch I might take a mile ie open the flood gates and he's probably right! I find the severe peripheral neuropathy much more isolating than the RA pain because it's so invisible and so much more alien - I don't think I'll ever get used to it. So it's possible for me to be with others with RA but not be able to convey how I'm feeling as I have a fairly broad autoimmune stuff going on rather than severe joint pain most of the time just now. So explaining to anyone, even someone with RA, that you feel as if your legs are cold wet and numb and your skin is crawling but you also have burning soles and funny bone pain in ankles and same thing with arms and hands makes a person feel sound and feel crazy!

I never tell my husband anymore and if anyone asks why I'm hobbling I just say it's my arthritis /RA rather than explaining it's because I lack sensation in my foot now.

Strictly for me I'm never sure about the bereavement idea and my own counselor hasn't mentioned it to me ever because I've always had health problems so I can do some things now I never could and other things, such as wear high heels, I never could do anyway! But I think she has helped me find some coping strategies for the uncertainty many of us live with day in day out which is good.

PS best start might be by going to your GP and asking to be referred - depending on the waiting list for community mental health in your area.

[Hidden]

its so difficult coping and under standing what you have to deal with, a member of my family told my to stop making my self a victim and they are trained in psychology it was as if I was being told to pull myself together and get on with things ,I hope they never have to face this rd I would not wish it on my worst enemy

[cathie]

I talk to a counsellor every fortnight I'm lucky to be able to afford to do this privately, at £50 an hour. I found her through lists of British association for counselling. I stopped seeing her after the initial problem was resolved and started again recently because I was do unsupported by rheumys. It's helped me to understand my own reactions. And to cope with the ever changing situation.

[magglen]

Keeping your feelings bottled up inside can mess with your mind! Being open and honest with your partner is essential. People know something is wrong when you don't share the problem as they can see something is wrong and may be making up all sorts of reasons thinking they are at fault, done something wrong etc etc.

Your GP could hopefully refer you for counselling. It would be a place where you could lay it all out. Then it is easier to see what from what. Then, hopefully, this would help you to talk to your partner more clearly

Maybe couple counselling would help too. The counsellor would help your partner to listen to you and vica versa. All good wishes xx

[Jeanabelle60]

This is a touchy subject for me. My partner of 7 years and I had thee most wonderful social life.....we were bikers, well he had the bike (a gorgous Harley) and I just sat in the back and enjoyed the views. Then I was diagnoised and it all seemed to fall apart. At times I couldn't I couldn't do the things I used to love doing, dances, rallies, travel, charity rides....if I did go I used to just find a seat and sit and watch everyone else having a great time.

My partner was quite supportive at the beginning but because it was taking a long time getting meds that worked for me it soon became clear that he was loosing interest, the sicker I became the more he lost interest. I think he thought it would be something I would have to take a tablet for and everything would go back to normal, I wish.

In the end up, when I was approching my worst, he just went out one day and didn't come back. I didn't notice that he had gradually taken some of this things out and he just left the rest.....this was a few weeks before C'mas and i was in the worst pain I have ever been in in my life. I had one child and had 5 miscarriages so I have an idea of what pain can be like.

It has taken me a while to come to terms with all of this but I think I can say that I have come out at the other side. The hurt/betrayal and the pain that caused on top of uncontrolled RD I'll never forget....but....I have made a new life for myself. Its not what I had ever thought it would be but it is alright. My RD is under control and I;m starting to 'live' again. I'm going to the C'mas Market in Edinburgh in mid December with two friends....its the first time in 4 years that I have traveled anywhere and I'm looking forward to it so much. My two friends don't drink so they will have the pleasure of linking me home at night!!!!

As for my 'partner' he had another woman within a few months. We live not too far from each other so I have run into him a few times. Its more awkward for him than it is for me. He physically becomes flustered. His daughters, whom I'm still very friendly with, have all told me that he hasn't been the same since we parted and that he drinks a lot now.

I'm sorry for him now not angry... I think in a way he is a victim of RD too. I have my wee bungalow that I'm starting to do things with and I have plans for the future too....a future I never thought I would have at one time.

The point I'm trying to make is that relationships can be difficult enough at times and when a serious illness is introduced some people can cope with it and some can't. The person with the disease needs to do what ever it is that they can to get the support that they need if they aren't getting it at home.... in this situation the sufferer needs to be selfish and think of their needs first.....this will help the partnership in the long run maybe. XX

[Hobbits in reply to Jeanabelle60]

I was moved by your experience Jean, yes in tough times we find out what our partners can and cant handle, we find out what others are made of, sometimes its very disappointing indeed.

I wont generalize here about men, and I hope no men on here gets offended, this is personal opinion based on personal experience, I think some men want to be the ones 'taken care of' and they can not cope when the daunting task of taking care of someone else with a life long chronic disease permanently, I think the reaction is based on fear, fear of an unknown future....and they now have no one to take care of them, like they envisioned. I think this can go either way, if a man has RA, Im sure there are women who think "this isnt what I signed up for and abandon their partners. I think though because women are nurtures we may be more likely to stick around, IDK...

This goes way back, before my RA diagnosis. My ex and I were happy as a clam, just married, looking forward to starting a family....at the top....had everything to live for, then we were in a car accident, my back was severely injured, he was not. He quickly became resentful that I was injured, I saw the look of fear in his eyes when my back spasmed and I collapsed on the floor, I was scared too because I didn't know what was happening either. He didn't come to my Chiropractor with me (I was terrified to go the first time) he was uninterested in my physiotherapy and my recovery. It seems he now saw he had to take care of me....and I know know now he is the type to expect a woman to take care of him. I thought it was supposed to go both ways, you take care of each other!

He seemed very put off that I could no longer attend family dinners where I had to sit for hours, he didn't seem to understand I was injured and in recovery..it was all about him and what he was missing because of me......yes...when you get a RA diagnosis (or any diagnosis) you learn what people are made of....some are strong, some waiver, some collapse and some just plain selfish.

I did recover within a few years and my back is as strong as an ox, but my marriage didnt make it, I guess its a good thing I found out sooner than later, but was devastated non the less.

The group I go to is not specific to RA, its Chronic Disease...Chronic Migraine, Diabetes, RA, PsA, Lupis, Heart conditions, Fibromyalgis, and bowel conditions, etc.....Everyone gets a chance to talk and everyone listens, we are different but in the same boat, we all struggle to not feel alone.

[JamieRN]

Hi Mohikan22, yes I believe it does interfere. I've been dx with Rhupus ( RA And Lupus) for 7 years (RA) And a year with lupus. I'm 51 but suspected since I was 18 I had RA BUT my blood numbers were always borderline until 7 yrs ago. My husband and I have a great relationship but he wasn't getting g it. The pain, the mood changes, the lack of sleep, you know the drill. I'd ask him to read about it, he didn't. I'm a RN so I tried to explain it,he seemed to half listen. So I decided the only way to get this solved was to bring him to my Rheumatologist. That seemed to work. Since the lupus had progressed from petite mal seizures( staring type or not remembering) to grand mal seizures last Oct( 2013) , then he got scarred. A neurologist treats me for the lupus because it did progress to the BIG seizures, so I took him to one of my Neuro apps. Believe me he gets it now. He's a deputy with 30 years experience so not much rattles them. I think it's that type of " military mentality" they learn to disassociate their feelings because they can't become emotionally involved or they can't do their job efficiently. I'm not saying he didn't care about me ( funny cause I'm a nurse who DOES care lol) but it did play a part in what was happening with us. So all in all if ur partner won't read up on it, or listen to you, I suggest taking them to the appt. The M.D. WILL make sure they understand because it is a lifetime illness. Hope that helps. Best of luck.

[Jeanabelle60 in reply to JamieRN]

Well done you......mine came to a few appointments with me but this was just because I couldn't drive at the time. When I told what happened to a friend who new both of us well her remark was simply 'some people don't want to be needed'......I think that says a great deal. XX

[dazzlebandit]

I have PSA and can tell you that yes, it really does mess with your mind. The pain leaves you feeling like you are alone and that no one understands and they may not. You are helpless and so are they! This all affects your life and our relations and reactions to others. I do not even discuss my illness with my husband, I dealt silently with the pain for 11 years before seeking help. I did not mention it to him until I had my bags packed twice in 2 weeks to leave that I had admitted that I was in so much pain that I didn't want to live. I also had myself convinced that I could never explain it to him because I have been "fine" for all of this time. That was the first thing that he said! How can you explain that you really haven't been? Amazing how we become master of disguise! 1 year and 2 months later, our relationship is still suffering from this admittance and diagnosis. I just don't tell him when I feel awful and he don't ask. I realize that this is not healthy, hence the relationship suffering!

[shazmill]

Hi mohikan. I was with my partner for 3 years before diagnosis. I tried to explain how I was feeling but he still didn't understand. I started giving him information given to me by rhumy.

He took from it what he wanted but nothing changed. My relationship is tatters but yours can still be salvaged.

Having this condition is hard and can cause problems with relationships.

I hope things work out better for you. Take care