Hi leanne, I do understand what you mean. Family are the worst for not understanding things. Once when i had a miscarriage, my grandmother said, " well its probably for the best, as it would probably of come out being mongol, or really badly disfigured or badly disabled!!". I was really shocked as i had explained about the things that might happen like the neo-natal Lupus, and that a doctor from the special care baby unit would be looking after me as i have Antiphospholipid Syndrome and needed heparin injections throughout the pregnancy. I am sure people just put their own insecurities or their own ideals on these things when people have a serious illness. We accept whats going on, but its like they cant, as its too much for them. What do they think we feel like sometimes. All we want is for someone to be there for us, we know they cant cure it, but an ear to listen or a hug would suffice. Anyway bye for now, love and hugs Astrid40xoxo
Hay leanne, i know just what you mean keep the happy face on when you talk / or around your grandmother , my grandmother is the same !!!! She's always asking are you alright , how are you feeling baby ?, is there anything grandie can do for you ??? But i know it's just her way of wanting to take care of me like i was still a llittle girl. We can't hold that against them for that, this LUPUS stuff wasn't known in their days of young age !!! LOL Well anyways take care of yourself ... Beverly L.
leanne said:
My grandma just found out I've been joining support groups online. I told her it is a great way for me to not feel so alone and know other people like me are out there. Her first question was "Has anyone been cured yet?"
I've explained things to her many times before but I don't think she will ever accept fully what lupus is or does to me. I definitely put on my "smiley face" when around her and other family members.
I just sent out the "Spoon Theory" and "Letter to the Normals" to my family and have gotten a lot of positive feedback. I think it helps others understand a little of what I go through. I just let my family know that love, support, and Prayers are what helps the most!
Beverly L. said:
Hay leanne, i know just what you mean keep the happy face on when you talk / or around your grandmother , my grandmother is the same !!!! She's always asking are you alright , how are you feeling baby ?, is there anything grandie can do for you ??? But i know it's just her way of wanting to take care of me like i was still a llittle girl. We can't hold that against them for that, this LUPUS stuff wasn't known in their days of young age !!! LOL Well anyways take care of yourself ... Beverly L.
leanne said:My grandma just found out I've been joining support groups online. I told her it is a great way for me to not feel so alone and know other people like me are out there. Her first question was "Has anyone been cured yet?"
I've explained things to her many times before but I don't think she will ever accept fully what lupus is or does to me. I definitely put on my "smiley face" when around her and other family members.