It’s what we all crave isn’t it?
The moment when someone acknowledges our accomplishments. That moment when someone acknowledges our suffering. It’s a beautiful moment.
The difficult moments come when you miss that validation. I called a member of my family about the exciting news I was accepted into the assistance dog program and they simply said, “I know hundreds of people who really need a service dog.” Implying that someone like me doesn’t “really need” one. My mom always says how irritating it is that some who see me at most, four times a year, knows enough to decide what my life is truly like.
I don’t expect strangers or even acquaintances to get me. I don’t even expect some of my best friends to get it, but I do expect family (both blood and chosen) to at least want to understand what the hell I go through.
People have no idea how much time I spend trying for validation.
There are some people who no matter how hard I try to educate, they just don’t want to understand me. Probably because I “look” fine. If I had cancer or a flesh eating disease they would have to understand because it would be in their faces, and it’s socially required to care deeply about these external disabilities.
When you have an invisible one though, there isn’t as great a need to understand, because as long as I put on my most dazzling smile it doesn’t exist.
Maybe I just need a better attitude, maybe I will never get through to some people. But then why subject myself to it? Phyllis will change my life. Give me back independence, confidence, freedom… so it hurt deeply when certain individuals were shocked or didn’t deem me worthy of such a gift. It won’t stop hurting either. No matter how badass I try to come across. I cried about it when I go off the phone with them and I cry about it writing this now.
Matt tells me it’s a great time to educate people… I totally agree, but when it’s family, putting your hurt aside to explain for the 651,500,284th time what Meniere’s Disease is, it stops being a “teachable moment.” It’s picking at an open wound. It’s beating a dead horse.
This is probably coming across as crass, or blunt. But it’s the world many of us chronics live in. We spend so much time seeking validation, for the good, bad, and ugly of this disease. We find validation in the strangest ways sometimes. I have such a great group of support from fellow suffers, from here, from Facebook, and from my face to face support group.
I truly don’t expect people to be experts on my disease. I just ask they believe me, celebrate the great moments and validate the bad ones. There is nothing better than having someone acknowledge what you are experiencing.