Hi Stressedout,

I'm so sorry to hear that you dont have the support of all of your family members! I know how frustrating it is and I think it is something that we all have to deal with unfortunately.

I too have dealt with the family not understanding. My grandparents didn't get RSD at all and they wouldn't ask how I was or how I got on at the hospital appointments etc. I got VERY frustrated and felt like they didn't care about me or how I felt. It got to the point where my parents were getting frustrated also so my dad went round and had an argument with my grandparents and told them that I needed them now more than ever.

It took them a while to start understanding and I didn't go round for a few weeks. Eventually though, I decided that I would go round on a bad day so they saw how bad it can get. It was very hard for me to go round and they still didn't understand how ill I was feeling but I think they started understanding a bit more then. My grandad explained that he was sorry about how he treated me and that he didn't know what RSD was and didn't think he fully would.

The day after I plucked up the courage to go and see my grandparents, we got a phone call from my nanan saying that she thought my grandad had passed away. Unfortunately, she was correct. My grandad could be really frustrating at times and caused a lot of hurt and upset but let me tell you, I would much sooner have that then not see him at all! My grandad has been dead 5 months now and not a day goes by where I dont wish he was here. I miss him soooo much and wish I could just see him again and tell him how much I loved him. I'm in tears now writing this. My dad never got the chance to see my grandad before he died due to the argument that he had with him and for so long he blamed me for what happened. I felt guilty also because I felt as though it was my fault and that I was to blame.

I guess my point is, I know that family can be VERY frustrating and cause so much upset whilst they are here but it is only when something truly happens to them that you realise how important they are. Yes my grandad was very annoying at times and upset me but I would give anything to have him back here now and just to be able to see him for one final time. I loved him so much and it was only when he passed away that I realised how important he was to me.

Unfortunately, you can't get family to understand what you go through. I don't think anyone would fully understand how bad RSD is unless they have it themselves. I am SO lucky to have my mums support and she has helped me so much - I dont know what I would do without her.

If I could suggest anything to try and help your family understand, it would be to try and write something in simple terms about what RSD is and how it affects you. So many articles on the internet are in scientific terms and are hard to read. Maybe ask them to come to the hospital appointments with you and get your doctor to explain RSD to them.

I'm sorry if i'm rambling. I guess my point is to just make the most of your family because you dont know what is around the corner. Reach out to them and tell them how you are feeling but dont fall out with them. There is a fine balance between saying too much and not saying enough.

Take care of yourself and I hope your family start understanding more soon. If they dont though, dont waste precious energy over them! My dad doesn't understand what RSD is at all and I have basically given up on trying to explain to him. It really hurts me but there is no point in telling him if he refuses to understand. I think sometimes, family members hate to see us suffering so much and therefore play 'ostritch' and bury their heads under the sand and pretend it isn't happening. Thats not to excuse their attitude but might give you some insight into it. RSD affects the whole family unfortunately and it isn't easy for any of us.

Take care of yourself and if you need anything, please know that I am here for you! It took a lot for me to write that post so I hope it helped you and that I wasn't rambling too much!

Love and hugs,
Alison.