Living With the Disorder No One Understands

People tell you it’s anxiety. Depression. That you’re just lazy. Or that you just aren’t fit.

Every day you wake up, and the second you sit up, your head kills with pain, your body feels like it’s spinning in circles, you have to take a deep breath. Your brain seems to be frozen most of the day and communicating in normal conversation takes an enormous amount of energy. That’s the norm. And you’ve become so used to it that you don’t notice it anymore. On rare occasion, you sit up and don’t feel that, but it is so rare that you notice it when it happens. And for a second, you feel so happy that your body hasn’t realized you’re up yet and has managed to stay pain free. But then it hits you. 

You start to go about everyday activities that completely wipe you out, when everyone else is just fine. A trip to the store seems like a trip to Hell. Sometimes you just wanna fall to the ground and sleep for days. You can drive safely but only because you’ve taught yourself how to handle the blurred vision, the lightheadedness, the skyrocketing heart rate. 

A normal heart rate for you is between the large range of 115 and 160, and anything below that seems like Heaven. You lay down to sleep at night and you can feel your heart beat pulsing over your entire body, sometimes it even seems that the bed is pulsing with the beat. And sometimes it feels like you have two heartbeats because it’s going so fast. But people tell you it’s just because of everyday stress, that maybe you’re just causing yourself to believe the pain is there when it’s really not. 

But you know it’s real. The pain is there all the time. Your muscles feel like they are going to burst, your heart is going to explode, and your head is going to blow up. You know you’re stronger than you can show, but the pain is just too much to bear most days. But this is the norm. And it’s become so normal that people think you’re just making it up when you actually mention it. 

They make fun of you for being “lazy” because you can’t run fast, because you can’t go up stairways without being completely out of breath, because you tell them your heart is racing and they try to tell you you’re just wanting attention. You don’t want attention, you want help. Inside you’re screaming for someone to please save you. You’re hoping that maybe someone knows what you’re talking about. But no one does. Deep down you wonder how life must be for everyone else. How it must feel to wake up pain free, to run freely without your body screaming in pain, to go about everyday activities without wanting to pass out because you can’t breathe. One of the hardest things is the fatigue. It’s trying to steal your life away, making it almost impossible to do anything. But you do anyway. You fight to be normal, to do the things that everyone else does, despite the grief your body is giving you for it. But you’ll keep on fighting. Because nothing explains your pain and no one understands it, there are only criticisms for not being strong even though you know you’re much stronger than them. You hope and pray that one day you’ll beat this. That maybe it’s just temporary even though it’s all you’ve ever known. You pray the pain goes away before life hands you challenges that may possibly kill you. 

I’m going to beat this. I’m going to beat POTS, the disorder understood only by those living with it.