My wife, after an extended period of extreme pain, and up to that point suffering from fibromyalgia, isn’t the same wonderful person she was prior to this terrible malady, to the point that no matter what I say or do, it creates a heated retort.
I do the best I can, but it just seems like it is never good enough anymore and when people ask how I can live with her I can only tell them that I love her and gave my word on the alter over 30 years ago “through sickness and health, good times and bad” and take that vow very seriously.
From what I hear this is a very common symptom of the malady and effect on those who love the RA sufferer and I just wondered if there is an online support group to help use get by without completely losing it.
I have RA and am married with two children, so have a patient’s perspective on how it can affect the entire family. I also have a Master’s in psychology with counseling training, so I thought I could share some ideas. We are in opposite roles, as my wife often is the one helping me out with the difficulties of the disease.
First off, there is no doubt that being a caregiver is a difficult job. Chronic pain changes the dynamics of a relationship, and can often so profoundly change the behavior of the person in pain as to make them unrecognizable at times. Working out some sort of agreement on how to handle the pain, what each partner can do and cannot do, is a general strategy. Discussing each of your needs, expectations, what to do on the worst days, and creating boundaries you both agree to can be a good place to start if you have not done so already.
I find it is best to have any sort of communication about the difficulties of the illness when the difficulties aren’t present (or when they are at a low). It is hard to communicate effectively when both parties are stressed out or in the throes of the moment. I find discussing RA with my wife when I am not in the midst of pain gives both of us more clarity on the situation.
Additionally, something to consider is discussing a plan together to change maladaptive communication. Discuss how you feel when certain things are said, and ask her to give feedback about what you are doing and saying as well. It can be very helpful to have a mutual understanding of how the illness affects your marriage for both parties if you have not already, and a plan to change things in a positive direction that you come up with together and agree on.
These are just some ideas I thought I would share. I deeply respect caregivers for all you do. I hope things improve for both you and your wife.
There are some online support groups for family members as well: The Arthritis Foundation has a support group called RA Connect and MDjunction.com has a Rheumatoid Forum. Additionally, I hope you will find support on our site, forums, and Facebook community.
My name is Richard and my wife, Kelly Mack, has RA and is a contributor here. First, let me commend you for reaching out to a community that can provide support and information. Your devotion and desire to help your wife clearly come through in your post.
I have to echo the sentiments of Michael on the need to work together on communications and planning. I can only speak from my own experience in saying that I don’t really think of myself as a caregiver. I think of us as partners who help each other in different ways to the best of our ability. We just happen to have different circumstances than most.
Michael has already directed you to one of our other contributors who has written some excellent articles on caregiving, so instead I would like to direct you to an article on managing the emotional aspects of a chronic condition like RA. The emotional often takes a backseat to trying to deal with the physical, but can certainly be a crucial element of the condition.
Along the same lines, I would echo Michael’s sentiments on support groups. Your doctor may be able to help you locate a local one. Sometimes getting to actually sit down with people having similar experiences can be a help. In addition, do not hesitate to seek out professional help. Here is an article my wife wrote about not neglecting mental health, including noting that “RA and mental health are inextricably entwined.”
Perhaps living with someone who is always in their own dream world, eg. computer, is very difficult for the person who is also living with RA. Perhaps when no companionship, conversations, togetherness or any other things a married couple should have just aren’t there, makes life that much harder for the person living with RA. The person living with RA is not responsible for having fibromyalgia, a back with chronic pain and RA any more than the deaf person she is living with.
I would never say my wife is responsible for the health problems she is encountering. I can’t imagine the level pain she feels but it seem like every time try to get close I get “put in my place” so find it better to just do what I can and keep quiet. Being hard of hearing is no joyous thing either and while I can’t imagine what her pain is she doesn’t seem to realize that my hearing comprehension where all the consonants sound the same has been medically diagnosed by the audiologist and all I can do is the best I can do. I love my wife dearly and am just looking for some support from others who may be in the same situation to help me so I can better help her.
Fred, I am sorry you and yours are having a hard time navagating communication with her Illness. I have RA and know my marital relationship, personal friendships, relations with family have changed drastically. The best thing I am trying to get across to my Husband is to not always ask to help me, but when he sees me struggling with something to ask me for help. There is some balance of independence we want along with a balance of support. It is almost like we do expect you to “know” us, or be mind readers. LOL – Try to write things down between her and yourself as that may help with the hearing issue present as well. AND then you can keep those notes and always have them around to remind you and help you and her if need be, start different habits in this illness stage of her life. I hope this helps, God Bless you for reaching out.
Thanks everyone for clarrifying the issue better and for your input on how to deal with the issue. I’ll just keep on keeping on and do the best I can using your ideas. For those who have this terrible malady my hope is that science finds a cure to help you.