To Someone Who Doesn’t Understand

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.



8 thoughts on “To Someone Who Doesn’t Understand

    • I often wonder how rare things like these are…especially when severity can vary. Maybe some aren’t troubled enough to seek a diagnosis?

      • mine started at 8 with just heart pain. My doctors just said it was anxiety and didn’t faint until 16, it was then blamed on hypoglycemia and then it got severe at 24. All those years I went to so many drs but didn’t have all of my symptoms until 15 years later.

  1. This was spot on! As crappy as it is to deal with, it’s nice to hear I’m not alone. I have seizures, too. Quite scary. It’s all quite scary. I wish you luck on your journey.

    • I’m glad others can empathize with it. I tried to make it a post that could be shared to help make family and friends better understand. Good luck with you too! I hope it gets easier for the both of us πŸ™‚

  2. I’m truly enjoying the design and layout of
    your blog. It’s a very easy on the eyes which makes
    it much more enjoyable for me to come here and
    visit more often. Did you hire out a designer to create your theme?

    Excellent work!

    • Oh thank you! Nope, didn’t hire a designer (I didn’t even know such people existed haha).This was one of the free designs that wordpress offers πŸ™‚ It did take a while for me to pick out a theme I liked though.

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