To Someone Who Doesn’t Understand:
Let me explain to you the terror and anguish I feel with this disease. I know you have trouble understanding how much this impacts me. How I can be scared at one point and laughing at the next. What you don’t understand is that each smile, each laughter, each happy moment covers fear and hurt and pain. I am told this is a benign disorder. That there’s nothing wrong with me. I am ignored by doctors. I am made to feel like a hypochondriac. When I go to the hospital I am brushed off. I have no where to turn and it’s all often too much for me to handle myself. I am told to just live with this “benign disorder.” To just deal with it.
So what do I “just deal’ with?
I faint. Often. Anywhere and anytime. Sometimes it is in front of strangers. Sometimes it is in front of family. And sometimes it is by myself. I scare people when I faint in front of them. They look at me like I’m a circus freak. Yet shockingly very few rush to my help. I have fainted in a store, fast food restaurant, at work, at school, at home, in the bathtub, in front of friends, alone… How often have you fainted? Do you even remember the last time? I have had to lay down in a restaurant bathroom, stairwell, elevator, ER, next to my bed… If I don’t lay down, I faint. To make one thing perfectly clear: Fainting is NOT benign. I have had a bloody lip, I have hit my head, scratched myself, bruised myself, dislocated joints, subluxed joints, bruised bone…I have woken up in a bathtub full of water, thankful I didn’t drown.
It’s not epilepsy. So I am told it doesn’t matter. This doesn’t mean I don’t convulse. I don’t have epilepsy but I do have psuedo-seizures. I fall to the ground, I loose control of my body and I seize. Can you imagine how it feels to not be able to control your limbs, but lay there helplessly as they move of their own volition? And these are the few times I am conscious. Often I just hear about it from an observer.
It’s not a “severe heart condition.” So I am told to ignore the chest pain, the tachycardia, the bradycardia, the arrhythmias, the hypertension, the hypotension… An heart rate above 200 is benign and then when it goes below 60? Despite happening in the same heartbeat? That’s also benign. Can you imagine having a heart rate that is so variable? It feels SICK.The premature contractions are nothing. It doesn’t matter that I physically feel ill everytime they occur. Hundreds of times a day. Heart disease is the number one killer. Everyone is told to go to the ER with chest pain. When they feel discomfort or pressure in their chest. I am told to ignore it. Would you ignore it? I can’t ignore mine. Most people ignore mine.
Every move I make, my heart could go crazy. Every time I move, I could faint. There is no mercy. This can happen in public or in private. I live with this every second. It is always in the back of my mind. This is the nature of the disease I live with. And yet I am told it is benign.