She huffs and puffs as I watch tears fill her eyes. I’m not looking at her but her sighs are apparent. She cares. It’s all i’ve ever wanted but how do I address something i’ve never experienced before? I keep my back turned and I think to myself, please read my mind. You said that you believe we have the ability to send brain waves to each other so can this be one of those moments? I want you to know that i’m filled with pain. But it’s this very pain that sleeps on my finger tips. That’s why I pull away when you try to touch me. I don’t want it to crawl onto you. I can handle my own problems but bestowing them on you, why I could never. You’re beautiful. So beautiful that I want to sit back and guess all of your stories. Your timeline is unfolding before my eyes and I can’t look away. Every wrinkle on your hand I trace with my eyes. Every tear that falls from your eyes I want to push back into your tear ducts. I can’t wipe away what’s already been implanted in your memory but I can destroy anything that tries to hurt you. I’m filled with anger and i’m often let down but i’m strong. I’m motivated and I swear every promise I make will be fulfilled. I was never beaten but I was brought up to do what I say or do nothing at all. So here I am, staring at you. I can’t believe how perfectly every atom inside of you has aligned, how every chromosome has been crafted by hand. Take my silence as a blessing. I know it echoes in your head, but you know i’m lying when i’m trying to tell you the truth. All I ask is that you stop crying. Don’t stop feeling but please give me the chance to open up to you. I think you’re great, but my walls need to be rebuilt before I can turn around.
“If you have a chronic illness, you’ve probably heard this at least once. “You are not your disease….” It’s a trite phrase that psychologist learn in their training on how to deal with people with chronic health symptoms. But it’s so condescending. I never introduced myself as, “Hi, I’m Autoimmune Hypophysitis, glad to meet you.” I know I’m not my disease. Telling me that isn’t doing any good. It makes them feel better because they’ve done their duty, so to speak. But it’s not actually constructive information. Here’s what I think they’re trying to say: “You do not need to be ashamed of this.”
They mistakenly see our griping as a cry for pity. We’re not looking for that. We’re looking for acknowledgement of hard work done. We’re seeking recognition of the struggle we’re going through. I mean, saying I’m not my disease is like saying I’m not the rain. Sure! I know that. But I still get wet. It’s still miserable to stand in without an umbrella when it’s pouring down. I still have to navigate around puddles and jump aside when a car splashes one onto the sidewalk. Managing my disease is hard work!That is why I’m whining.
I am not my disease, but this disease is obnoxious. It stops me from doing what I want to do. It stops me from expressing myself in ways I want to. It stops me from going the activities I want to be involved in. It stops me from spending time with my family and friends. It stops me from being the person I want to be. It stops me from having peaceful sleep. It stops me from working. It has changed me to my core. I am learning to be an entirely new person, one I never dreamed of being in my worst nightmares. That’s rough and scary. I never prepared for this. I never thought this possible. I’m winging it and I have no idea if I’m doing a good job or not. And all of that is due to my disease.
Please don’t minimize that.”I found this here and I absolutely love it.
This is absolutely….
God dammit this.