Ever since I was diagnosed, I have only thought about myself. I thought about how I need to accept my condition and move forward. What I failed to remember is that my family needs to accept this too.
My immediate family has been handling it relatively well. The only real problem that my mom is having is that a mother can usually fix their kid. But my mom can't fix this. And she has been doing really well with starting to accept that.
What makes me feel awkward is that my mom just gave some information on EDS to my grandmother to read about. I feel weird because I never thought of her and how she should know. I never even personally told her that I have it. I'm thinking that my mom told her. I don't know, it just feels awkward.
So educating your family is essential to gain support from them. I am just beginning to realize that the more I educate my family, the more they understand, which means the more they are there for me.
I have a story that relates :)
ReplyDeleteI was having a discussion with my friend and her sister and mother today. They were asking me questions about EDS (and at this point I have no problem explaining it to everyone). They told me that one of their family friends has this but doesn't know a lot about it. My friends' mom asked me to explain what I thought was important when you are diagnosed or you know someone who has been diagnosed..my answer was education. Educate family, friends, teachers, etc. I told them that only once everyone truly understood the disorder would we be able to work together. My family is very supportive and I am blessed with a great support system. It looks like you have a very supportive (willing to learn) family as well.
Keep educating people. It is probably the most important thing you can do for yourself. Send family members videos that explain EDS (I made a video), send them articles...but make it EASY--there is nothing easy about EDS so it's important to find a way to make it easier to understand.
Sorry for my rambling comment!