I think I can finally put into words what the lack of understanding received from people feels like.
My mom has often told me the story that when I was a little girl, around age 2 or so, I was trying to tell her something, but she could not understand what I was trying to say. What in my head were obviously intelligible words meant absolutely nothing to her. I tried and tried and tried to get her to hear what I was saying until I got so frustrated that, if I remember the story correctly, we both ended up crying.
We were speaking the same language, but in a very different way, a way that made it incomprehensible to the other.
Even today, over 20 years later, I can exactly imagine what that little girl went through. The pain and anguish of not being understood, the frustration of talking and not being heard.
I think a lot of little kids have that same experience, of having their parents not understand what they are trying to tell them. I think it is the type of thing that we file away, in order to protect ourselves from the psychological pain that would continue to wreak havoc if we let it.
And some people are lucky that they can live their adult lives and never have to experience the gulf that can exist between you and others when there is the absence of understanding.
Others of us, like me, walk around pretending it’s okay, while inside, I am (we are) that little girl. There seems as if there is no escape from the never-ending lack of understanding when you have a chronic illness.