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

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! 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!!

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 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.

"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!

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