Posted 9/20/2010 3:42 PM (GMT -6)
I don't think I've welcomed you yet, so welcome to HW. It definitely is tough trying to get people to understand what it's like to live with a disability. I'm not sure anything really every gets through to people other than them experiencing something for themselves. I've tried plenty of explanations & I've seen others do the same. I will say that it does get easier as you get older b/c your friends have had more life experiences and are more likely to have experienced at least some sort of short-term disabling condition.
I thought I had found the most insensitive idiotic person out there when I was first diagnosed with fluid building up around my brain causing crippling headaches & severe neurological issues and was told my some moron that he has had some "zinger headaches" at least 3-4 times per year, but he took some aspirin, thought positive thoughts and went to work because it's good to keep your mind off these things. I'm not really sure how anyone can compare a severe tension headache to blood and spinal fluid building to dangerous levels around the brain, requiring a hole to be drilled in my head, but it turns out that guy wasn't the dumbest person out there.
My friend was dx'ed at 21 with cancer. By 25, it had spread throughout her body and she was given a few weeks to live. She fought and made it nearly a year longer, but it was severe, it was a really rare form and she was getting chemo, radiation, surgery, etc. much of the time. And some dimwitted fool said that everyone has tough things, that there are days when she was so tired she almost didn't want to get out of bed, but she did.
So I think, sadly perhaps, that there are some out there who completely lack empathy, but many try to relate it to their own lives to make some sense out of it & they just haven't experienced anything so devastating. Some make even more of an effort to connect, but many don't. And while I used to resent them for it, I'm beginning to think that maybe there is so much misery already in this world that trying to grasp the horrors of disabling health conditions & to recognize that it might occur to anyone at any time might just be depressing. We need people in our lives who are upbeat & think that things can be turned around even when there is no indication that change is possible (well, I need people like that). I've just come to understand that I need to choose when I can be around those people. When I need a break & don't want pity or don't want to talk about how I'm feeling but just want people to treat me like everyone else, those naive friends can be a real blessing. And when I'm just really, really down and struggling, I have friends who have been through much worse tragedies than I have who can sit and listen and maybe share and idea or two about how to make it through to tomorrow.
I'm much more judicious about who I share my issues with than I used to be. I tend to tell most people as little as possible. I have some close friends who are the exception to that, but they really are the exception. But best of all, everyone here at HW understands what it's like to live with CP, what it's like to hear all the stupid and/or hurtful things that people say -- usually unintentionally, what it's like to feel lonely or scared or confused or to rejoice over something so simple as being able to make a pot of tea without being in horrific pain. And I'm grateful for that b/c it means that in the middle of the night, when my close friends may have finally found some much needed sleep, I can connect with compassionate souls & know that I will make it through this somehow.
Know that you are always welcome here & we do understand.