I'm a husband of a wife who has full body RSD. One of the downsides of this has been my wife's large family who've seemed to have vanished. Out of 8 siblings who all live nearby only one contacts my wife once in awhile. Even her mother stays away even though my wife has been angry with her because she feels (I don't see it, but I believe it) her mother has put distance between themselves. Her 4 sisters came over only one time in 3 years in which I took the opportunity to educate them about RSD and told them to look it up and read up on it and you'll see exactly what I've told you. One sister who works in the medical field stated that it would be wrong for my wife to take narcotics to control her pain, motrin and or acupuncture should be good enough in which I held back my tongue and kept my cool. My wife was so happy to see her sisters it just breaks my heart that they seem to stay away. It's strange to me because she will not call any of them because she will not use the phone at all mostly because of pain but is very happy when a brother stops by once in 4 years. I will say it is a two way street in that at the beginning of her RSD she was not too friendly with anyone at all and went into a bad depression and even to this day she will not go to family functions. This really does bother me because she is the oldest and the one who was always involved before the RSD. And I wish she would at least take a drive to her mothers but she will not go. Anyone have any experience with this or a solution or even "tricks" for that matter. I've tried to get her to see a psychologist but she refuses. She will only relate to my family. Sometimes I get the feeling she is doing this fearing that once she reestablishes her relationship with her family I may leave her. She has gotten better these past two years and would love to see her involved with her family again.

How does she feel about it? If she's happy with how things are, then leave it be. No? You cannot force her to go see a psychologist, and I don't get why she should.

I can relate to this a lot. First though you are a very kind husband to be reaching out here. My mom and I am 30 but anyhow is my biggest support but other then that and my ex step dad no one calls or checks up on me and when my grandfather for ex does I usually am told why I am not better because I am not doing XYZ or I should be doing something else. I have even been blamed for my rsd and pn because of some past health issues. What I am doing now is trying to focus on the support I do have rather then some who will never understand. For ex my mom does the world for me so I focus on her. Your wife can focus on you. I recently went back to a psych and for 2 years of this I did not want to. My life got to the point where I saw I needed more support. The statement that she fears you may leave her is there any truth to this and if not or if so have you sat down to communicate? I really feel talking about this together is key. The rsd or any major health conditions does take a toll on the whole family and part of coping is to work together and discuss feelings. Could you state to your wife what you stated here? Are there real time support groups in your area for rsd? I know in my area there is one for family and the suffer. I know as I go through this my feelings around my condition and life changes but I am trying to work on feeling those and work on ways for a better quality of life. This is hard of course in flare ups but one day at a time. If you want you can PM or your wife can too. I always like email buddies and really support of others and not isolating can really help.

I do leave it be but after 30 years of marriage and knowing her and her family just as long and the fact that her mother is in her 80s it does bothers me and will bother her if something drastic happens to her family members. She always had a close relationship with her family up until she developed RSD. I don't put undo amount of stress on her but the family thing never-the-less bothers me because I feel its not good. She once told me if her father was still alive none of this alienation business would exist, in that he would have rallied the family around my wife instead they stay away. Its quite sad.

It's good that she has you to help her with this. Some of the mates don't seem to support their spouses with RSD.

As far as Psychologist. If she is dealing with depression then she would get some good help from one. With RSD we seem to go into our own little world at first due to the amount of pain we have. I know I did. I spent all my time at home and didn't do anything with my family. I had Bill to take the boys swimming and to do other things when I use to go with them. I didn't go around my daughter, but she was my caregiver so I saw her 3 days a week anyway. I wouldn't go back home to see my family, didn't go back when my sister passed away but I had seen her awhile before at my other sisters house before she passed. I couldn't go back with Bill when his Mom died. I finally went back home last Sept for 2 weeks to visit with my sisters and brothers after about 5 years. I did talk to the them on the phone when they called but I wouldn't pick up the phone and call them. Still don't.

Give her time and maybe she will get a little better to where she will go visit them and spend time with them. I totally understand though since her Mom is in her 80's. That doesn't leave much time.

Have you thought about inviting them over and you cooking for them. If she didn't have to wait on them that might help. When you're disabled, it's hard to wait on a lot of people.

I am from a family of 10. I've lost 3 and have one more with cancer so time does pass by and people don't live forever, that's for sure.

Good luck to you and your wife.

Ada

Thanks for your response daniella! Oh, I've told her over and over again that since you put up with me all these years I will never leave you and said it a 100 times in a 1000 different ways. I've taken control of her treatment in the early days of this disease in that she was getting nowhere. I stepped in, a very angry husband at the doctors, rattled the cage to get her treated NOW! Taken care of getting lawyers, fighting for her SSDI, writing congressmen etc, keeping her standard of living and way of life intact. However, if anything happens to me healthwise, I'd fear for her. She is the shy type and stays to herself somewhat. I've suggest support groups and chatting online but she backs off, which is ok with me but the family thing is important. She will associate with my family and friends but not hers. She's from a good family, good people so the whole thing doesn't square with me at all, both from her and her family. Its been 7 years now that she's had RSD and I'm hoping time will bring them together hopefully. Thanks again daniella and I hope you have a great day!

I don't think there's much you can do, unless the initiative comes from her. Again, you cannot force her to do something she clearly doesn't want to do, or she'd have done it.

Thanks for chiming in dreambeliever. You sound similar to my wife in respect to what my concern is. Her depression was much much worse 2-3 years ago and has come a long way for the better. I mentioned to her I'd go with her if she wanted me to, to see a psychologist but didn't.
I think inviting her brothers and sisters over again for a cookout (I'm the barbecue man) is a good idea and will run it by her but my feeling is she'll refuse. And I know she will not invite her mother. The weather is warming up and Spring is here so there is a slight possibility she may go for it. Thanks dreambeliever.

Hi again. I know that you want the best for your wife and I understand helping your wife with things when she can't but on the things she can I think she needs to be accountable and do. I know it is hard finding a happy medium but really as she sees she can do more it will give her a sense of well being. I know many of us go to extremes where one will not want any help and one person will want too much. It is finding the colors of getting help when need it and also doing on ones own. I know for me as I see I can do more it helps me feel better about myself. I also know that when I first got rsd and pn I was almost ashamed of my limits so I did not open up to many. Now as it has been 2 years I have started to take more chances being open and really it has helped me feel less alone. As I see I do enjoy some things it helps me to push when I can to do other things. Being shy and staying to herself is safe probably and comfortable to her. Pushing through this can create a lot of anxiety but also can really aid in a better life. I have had a lot of therapy so excuse me if this sounds to therapist like but maybe if you ask her what her fears are of seeing her family? What she fears trying a psych because if it does not help she could always quit but it may?What your wife thinks would help her right now to feel more supported and what she needs from her loved ones?Often for myself if I am asked what I need rather then told or nudged it helps me to come around. Does that make sense. Also really you can tell her if she wants an email buddy I am here. I know you said you tried but maybe if you tell her a specific email buddy it may seem less overwhelming. I am sure others here would be happy too. Many thoughts

I pulled away from people a few years back to try to lessen their pain if I killed myself but have since decided it wasn't fair to them or me so just quit it. Perhaps your wife has a hand in this separation or perhaps her family is just angry with her. I might try getting together with them individually after consulting the wife about it.

There are people who react very poorly to sickness or disability but it's hard to imagine her whole family would be this way.

Good luck.