Alienated family members
 

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.

Hi Jim,
 

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!:D

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. :D

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.

you are doing well
 

I wanted to say that is awesome of you to be there for her....you are doing what you can, but don't forget it may be her insecurity for getting rejected from others talking not just how she thinks about you. Plus I think as a caregiver and supporter is is just as important for you think to think about getting yourself maybe some counseling for coping with her and give yourself a break too. You are doing more than many husbands to for their wives and I think that is wonderful....it would be great if we could all have someone like that in our lives. Even if it is hard to keep reassuring it seems like that is what she needs to hear from her so try not to get frustrated, it is not her thinking you are not doing enough but fear and her knowing she can say that and you won't go away. Every woman needs regular reassurance whether it be about if their but is big or if you still love them. You are doing great, don't forget to take care of yourself at the sametime!
Jennelle

Hi,
 

I hope that you could get her to try the cookouts.

I think that's what got me out more then anything. My kids do cookouts in the summer months a lot and on holidays, it can be 30 to 40 at their cookouts. They invite me to most of them unless he has to have something for his men at work.

I can remember no matter how sick Bill and I were we would go and we'd enjoy it. With so many people around it's hard not to be talking to someone and maybe forget the pain for awhile.

When we first started doing them, there were times I had to lay down for awhile at them but there were so many people there they didn't notice.

It could be something else going on with her and her Mother though that she doesn't want to be around her.

My Dad held the family together also but when Mom was living we still all got together at her house and we all brought food. I still do when I go over to the kids for a dinner or a cookout. That makes it easier for the cook.

Bill and I both did councelling also. He went for a few years to help him learn to cope with me and when we knew he didn't have long to go, we both had councelling to help through that. I think it would be a great ideal for you to have councelling also. They are great listeners and don't repeat. LOL

She might need more time to get to a better place where she can be around people. I think for me it was about 9 years. I was a mess.

Be patient and just hang in there. It does get better.

Ada

Hi Jimiking,

I'm sorry to hear that you and your wife are having to deal with all of this!:hug: I really hope that your wifes family will start understanding more soon and you are both in my thoughts.

Like many others, I too know what you are going through. Hardly any of my family other than my mum understand what RSD is and come out with some very insensitive comments sometimes. My nanan once told me that if it was that bad, I should just chop my leg off! I think she ment it as a joke but it still upset me a lot. I honestly don't know what I would do without my mum - she has been with me throughout all of the rough times and supported me all the time.

I have had RSD for 2 years now (I developed it in March 2007 when I was 12 years old) and my family still don't understand what RSD is. Last year, I was VERY upset and angry at what they were doing to me. They hardly ever got in touch with me and everytime I went to see them, they would say some insensitive comment and leave me in tears. Eventually, I stopped going to see them as it was just way too stressful for me. My parents thought it was pathetic also but didn't want to say anything because they were family. Eventually though, my dad had enough and went to his parents house (my grandparents) and told them how upset I was. They came out with some rude comment or something and it lead to a big argument.

I didn't go and see my grandparents for weeks after that and they never got in touch. Eventually though, I plucked up the courage to go and see them to see how they reacted. My grandad said that he was sorry and that he didn't realise that he had upset me as much as he had and that from there on in, he would try and be better and listen to me. The day later, he had a massive heart attack and passed away. I will never forget the argument my dad had with them and still, after nearly 6 months, I blame myself and wish that I never told my dad to go and say anything to them. My dad never saw my grandad the few weeks before he passed away and for so long, he blamed me and it was the hardest thing to deal with. I guess he just felt angry but it upset me and I felt as though it was my fault, even though I hadn't really done anything wrong.

My grandad could be REALLY annoying and insensitive at times but I would much sooner have that then not to be able to see him at all. It's the hardest thing ever knowing that I can't go round to my grandmas and see him one last time or say my final goodbyes. There are soo many things that I wanted to say to him and I know i'll never get that chance again.

I guess my point is, try and get your wifes family to understand but don't cause any arguments. That is the last thing you need and you never know what is around the corner. I had to learn the hard way and it's one of the hardest things to deal with ever. It's important that your wifes family understand and realise that she needs support and you need to try and get the message accross to them without falling out over it (even though it can be hard at times when you are so upset). I think the problem with some of my family is that they don't like to see me dealing with all of this at such a young age. That is OK for them but what about me? I'm the one that has this ilness and cant just blank it out like they do!

Have you given your wifes family some easy to read information on RSD so that they can read it if they want? That might help them to understand better. We tried giving my family info but not all of them read it unfortunately.

I think the cook out sounds like a good idea. That way you can get all of your family together and speak to them then about RSD and how it affects your wife etc. Also, the help of a Psychologist might be useful. I know your wife really doesn't want that but they can help people come to terms with dealing with an illness and give you ideas on what might help your family understand. I see a Psychologist and she is brilliant and has helped me deal with a lot of things. I still get very frustrated but it is easier for me to 'manage' it now. Also, as someone else suggested, councelling for you sounds like a good idea. RSD affects everyone, not just the person suffering! I know my mum has dealt with a lot since I have been diagnosed and hasn't really had anyone to support her and ease the pressure.

Take care and I hope you can get things sorted soon as I know how frustrating it can be. If you ever need someone to talk to, please know that I am here for you!!:hug:

Alison.

Ali,

That's quite an ordeal you went through, both with the RSD and with your family. Please stay strong throughout all of this!

I guess only us RSD patients can truly understand what RSD is and what it's like. Only true support can come from other patients and people that love us no matter what. No one else can even begin to imagine or understand and you can't force them to do so. There are people who support us no matter what, and OTOH there are those who won't even begin to make an effort to understand.

There are even people who try and harass us because we have RSD. That happened to me.

I once got this absolutely rude and insensitive comment from a complete stranger, saying that his aunt had Cancer for God's sakes, you know the big C (as if other diseases didn't matter), and that *she* could still do things (non-terminal) and that *she* traveled half across the world, so what was *I* complaining about! It didn't get what the comment was all about, I only know that it was uncalled for and extremely rude. Then later, this person apparently discovered that RSD pain is far worse than non-terminal cancer pain. All of a sudden it was different. All of a sudden, I deserved understanding and comfort. Luckily, you can ignore complete strangers. Ever since I went public with my RSD, with my website and everything, it's like the whole world needs to judge. What I'm trying to say is, there are always these kinds of people, people of ill will who try and hurt you no matter what. They'll find an excuse every time, if it's not this, it's going to be something else. They can be strangers, they can be family, they can be whomever...

Don't let them get to you.

I always give people who want to know more about RSD the usual RSD sites on the net, as well as directions to all the forums.

I had to laugh at this post (or else I would cry). I have been going through the same thing with my family for over 4 years now and they do not change. I recently sent a note to all family members and my close friends about how I am feeling and what not to say to me or to people suffering from chronic pain and I never heard a word from my family but heard from all three friends immediately. Amazing. I told them I spoke my thoughts and then was not going to say anything again because it was over 4 years and I am tired of it all. It really amazes me too how family could be like this. I just don't get it. At least I know I am not the only one out there with this problem. I had my mom look at me the other day as I was wheeling my wheelchair to the curb "Oh what's this? You mean you have to take this with you? You never use it? (I used it the day before when she was not around me). She told me that someone told her from the door entrance to the room we needed to go in was a short distance. Yes, short to them but a long walk for me. It was a mess. THen, I had a hard time sitting in regular chairs and was in alot of pain the whole time only to have another family member say to me "Oh you look so good." I wanted to slide down the chair under the table!!
Thanks,
kathy d

Ali,
I want to say, that you have been through too much for a young lady! I really admire your strength of character!

Jim,
You said it right in your first note, She was the oldest, and the one who was always there. (Not quoting).
So, Everyone's expectation's are now NOT being met.
Including your wife's.

I'm living in the same world.
I was the "dynamic" person in the family, the "go to " person, after my mother died.
I helped everyone.

Now, I can't BEG a phone call be returned. I raised my children ALONE, w/ rsd. I haven't heard from them in almost 5 years! I'm hurt, and alone, and, scared to death, truth be told.

You can choose your friends......
Be thankful for that.

Those who don't get it, you just can't force it on them.

I wish I had a magic answer, if anyone does, pass it along?
I've BEGGED people , my children, just to give me a call.
Nope.
I'm too "needy" now or something, I have no idea..
I wish it weren't this way.
But, you and all like you and us, are in my prayers.

Pete
asb

I agree with you Imahotep. Some people do react poorly. But I can also relate to the wife pulling away from everyone in her family. My fiance' does the same thing. He sees my family regularly, but rarely even calls his mother. I pretty much have to say "Reed, call your Mom!!"
I personally think that Reed would stay way from everyone if given the chance. He feels so much safer in his little room, and his little world.
The the original poster, glad to meet you, but sorry it's because of RSD. you can't force your wife to do anything, but sometimes a little pushy encouragement can help. Everything is different person to person though, and you know her better than anyone. Maybe the suggestion of speaking to her family individually is the best option right now.
good luck to both of you!

Nice to meet you Pete..and :hug: for you. i hope your family realises what they are missing out on and makes things right.

daniella, over the years I've talked to her about her family and she just brushes it off like its nothing but I know better. I seen her face brighten when a relatives popped in twice in 4 years. She's the silent type. I've posed the question several times over the years, in a matter of fact way, if she'd like to see a therapist just to have someone talk to who deals with people who are in pain 24-7. Or to teach you relaxing techniques etc. She does move around and walks in the park and does a ton of gardening at her own pace. She has always been shy and having RSD just made her withdraw a bit more. If I was to ask her if she'd like to talk with someone who has RSD she'd shy away. But I'm working on her to open up more and that is why I've joined this site and many others and joined 2 pain organizations. I just think it will take time.


"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."

Imahotep, For two years my wife kept secret from me that she was diagnosed with RSD, fearing the worst, fearing I'd leave her. She is very independent and shy. She never liked doctors much and I swear she only went to the docs twice as far as I know in 25 years. I do believe she pulled back for the same reason you did and her family may have gotten angry over it because, I think, like many, don't think much of RSD and that its mostly in my wife's head. I've talked to each family member and also given them printed material pertaining to RSD and it's effects. One sister does keep in contact with her and one brother once in a while.

"I wanted to say that is awesome of you to be there for her....you are doing what you can, but don't forget it may be her insecurity for getting rejected from others talking not just how she thinks about you. Plus I think as a caregiver and supporter is is just as important for you think to think about getting yourself maybe some counseling for coping with her and give yourself a break too. You are doing more than many husbands to for their wives and I think that is wonderful....it would be great if we could all have someone like that in our lives. Even if it is hard to keep reassuring it seems like that is what she needs to hear from her so try not to get frustrated, it is not her thinking you are not doing enough but fear and her knowing she can say that and you won't go away. Every woman needs regular reassurance whether it be about if their but is big or if you still love them. You are doing great, don't forget to take care of yourself at the sametime!"

I wanted to say that is awesome of you to be there for her....you are doing what you can, but don't forget it may be her insecurity for getting rejected from others talking not just how she thinks about you. Plus I think as a caregiver and supporter is is just as important for you think to think about getting yourself maybe some counseling for coping with her and give yourself a break too. You are doing more than many husbands to for their wives and I think that is wonderful....it would be great if we could all have someone like that in our lives. Even if it is hard to keep reassuring it seems like that is what she needs to hear from her so try not to get frustrated, it is not her thinking you are not doing enough but fear and her knowing she can say that and you won't go away. Every woman needs regular reassurance whether it be about if their but is big or if you still love them. You are doing great, don't forget to take care of yourself at the sametime!

Jennelle, Thanks! One subject that gets my wife to softly cry is her rejection she received from her former employers. She worked for a very large company in their benefits department for several years. When she developed RSD and told her boss the company appeared to find ways to dump her and gave her assignments that increased her pain such as lifting boxes, moving office equipment etc. and doing this more so than her administration duties over time. I have thought of getting some counseling but hesitate because of cost. I pay out of pocket for group health insurance close to $1000 a month plus I paid over $5000 in copays in this past year for her so adding more copays may take food out of our mouths. Yes, one thing about men is they forget to regularly reassure support and to express their love over and over again. I keep forgetting that sometimes. :D

"She might need more time to get to a better place where she can be around people. I think for me it was about 9 years. I was a mess.
Be patient and just hang in there. It does get better."

Ada, This is what I'm hoping and praying for! Did I read your post correctly, did you lose your husband? :(


"My grandad said that he was sorry and that he didn't realise that he had upset me as much as he had and that from there on in, he would try and be better and listen to me. The day later, he had a massive heart attack and passed away. I will never forget the argument my dad had with them and still, after nearly 6 months, I blame myself and wish that I never told my dad to go and say anything to them. My dad never saw my grandad the few weeks before he passed away and for so long, he blamed me and it was the hardest thing to deal with. I guess he just felt angry but it upset me and I felt as though it was my fault, even though I hadn't really done anything wrong."

ali12 Nice talking to you ali12. I've read many of your posts and pray for a cure so that one as young and wise as you can live without pain. Yes, I do believe a cure or a very good treatment for this disease will happen in the next 10-15 years or sooner! Many research projects are being conducted now on the humans' nervous system that may connect the dots and get this painful disease into remission at all levels of RSD. In the 7 years I've known of RSD, it has gotten much more needed international attention and hopefully more to follow. I was very close to my Grandfather so I understand your anguish. You should feel no remorse in what led to the incident that happened, none at all. It was no coincidence your Grandfather had the time to say he was sorry. He really was and was able to tell you before he left. Have a great day ali!


"I had to laugh at this post (or else I would cry). I have been going through the same thing with my family for over 4 years now and they do not change. I recently sent a note to all family members and my close friends about how I am feeling and what not to say to me or to people suffering from chronic pain and I never heard a word from my family but heard from all three friends immediately. Amazing. I told them I spoke my thoughts and then was not going to say anything again because it was over 4 years and I am tired of it all. It really amazes me too how family could be like this. I just don't get it. At least I know I am not the only one out there with this problem. I had my mom look at me the other day as I was wheeling my wheelchair to the curb "Oh what's this? You mean you have to take this with you? You never use it? (I used it the day before when she was not around me). She told me that someone told her from the door entrance to the room we needed to go in was a short distance. Yes, short to them but a long walk for me. It was a mess. THen, I had a hard time sitting in regular chairs and was in alot of pain the whole time only to have another family member say to me "Oh you look so good." I wanted to slide down the chair under the table!!"

Kathy, I'm absolutely convinced the rarity of RSD leads to this kind of treatment from ordinary people and even doctors. If you had cancer or MS etc. people would treat you differently, for sure. I'm even a little guilty of it myself during the early years dealing with my wife. I really had to do my homework and kind of analysis my wife's behavior and put 2+2 together to truly understand or attempted to understand what exactly it is she is going through, because she was having a hard time talking and or articulating her feelings both mental and physical because of RSD. Many times I had to read between the lines.


"I wish I had a magic answer, if anyone does, pass it along?
I've BEGGED people , my children, just to give me a call.
Nope.
I'm too "needy" now or something, I have no idea..
I wish it weren't this way.
But, you and all like you and us, are in my prayers."

AintSoBad, Sorry ASB for this to happen to you. I really don't get it myself but could be the "needy" thing that moves people away even though you don't ask for anything. Maybe it's our modern western ways perhaps. I surely hope that your kids give you a call!

Hi Jim,
 

I lost Bill 2 1/2 years ago. It's been hard. It does get easier and I have great support and pictures all around of him. We were married almost 35 years.
I dream about him every once in awhile still. The other night I was dreaming I couldn't find him.

He was one of the best people. I often wondered how he put up with me after I got sick.

Everyday is precious. That's why I do believe in family relationships.

Ada

I'm very sorry to hear that. You must be tough as nails cause if it were me I'd have fallen apart. Suzy and I are close to our 30th so I can see when your husband passed a part of you left with him. Very sad indeed. I'm glad you have your family for support. We have no children so to me we are walking a tight rope and it's one reason I'd like to see her family ralley around her. You are an inspiration dreambeliever. :)

Jim,
this is just a thought, but is it possible for you to engage your wife's family?
That would be like phone calls, get a feel for what they're going through in this tragedy?
Then, maybe (I don't know how close ya'll live to one another) even stopping in for a visit, then, get your wife to go with you?
I suppose that, you reaching out on the phone would be the first step.
But, one step at a time.

I'm not telling you what to do, like I said, just a thought...

It's clear that you're concerned, and a fine man / husband!
I wish the best for you.
And, your wife!

pete
asb