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.