Ann, this is so, so true. The whole posting. It's hard for some of us (me, for instance) to sometimes convey support. It would help to know how Rachel would like to hear caring answers. I think that every answer here is a caring message so I hope he can either feel that or else tell us a better way. I'm all ears Rachel. I know that it's hard enough to deal with regular people who aren't dealing with an autoimmune disorder. I hope you can let us know your thoughts on the matter.
Please take care,
Petunia
Ann A. said:
Dear Rachel Sara
When you offer an answer, how would people need to respond in order for you to know that they care? How should they offer an alternative point of view in a way that doesn't make you fell as if yours didn't matter.
Communication can be difficult. And sometimes we have to tell people how we want them to respond.
I have people in my life to whom I can say, "hey, I ain't asking for your advice, I am just asking for your support." There are people in my life who think that I am asking for advice when I inform them of any plan, "Well why don't you ..." I find it annoying. But I know some of them care about me, they don't think things through.
I am new on this site but I definitely care. I have had lupus for about 31 years now. Many ups and downs. Sometimes I feel like people dont care too but then again I think because I dont look sick they almost forget that I have lupus. I will write more later - trying to help my mom on her computer.
Rachael how are you doing I am hoping a little better please find someone you can talk to this disease is so hard for even us to understand the people around us just don’t get it check out the spoon theory.com it seemed to have opened my husband’s eyes somewhat after 13 years take care of yourself .my new saying is lean in don’t shut down its really hard to get out of that mode let us know how you are doing please you are cared about very much.our family’s may have a hard time showing that because if they acknowledge it then they have to accept it
And if they accept lupus, then they'd have to see the horrible monster and acknowledge that they too are vulnerable to having life give them a sudden, unfair kick. No one likes to look at that, let alone acknowledge it.
fightclub said:
Rachael how are you doing I am hoping a little better please find someone you can talk to this disease is so hard for even us to understand the people around us just don't get it check out the spoon theory.com it seemed to have opened my husband's eyes somewhat after 13 years take care of yourself .my new saying is lean in don't shut down its really hard to get out of that mode let us know how you are doing please you are cared about very much.our family's may have a hard time showing that because if they acknowledge it then they have to accept it
Rachel, I care. Many of us can relate to what you are feeling. Unless you have a chronic illness like we do, many don’t understand. Esp loved ones who try and give remedies and “opinions” on what you should be doing and not be doing. No on walks in your shoes but you… We all have very different disease symptoms, but one thing we have in common is Lupus, it has brought us together, so you will never be alone here. Keep hanging in there!