Canceling Plans Because of My Illness Is Not a 'Cop-Out'

We make plans, and I have to cancel last minute. I know you probably don’t understand and feel like it’s a cop out. Or are sighing, thinking, “Oh great, she’s sick again.” Maybe you think I’m avoiding you, I don’t know. I understand because I’m frustrated with myself and my own body. But it’s not a cop-out. It’s not because I’m just not pushing through. It’s not because I don’t want to be there, because 110 percent, I do. But this isn’t just “being sick.” It’s not like, a cough or a stomach thing I can get over.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

A flare-up doesn’t sound bad, but I can’t explain the depths of pain my nerves wreak on me. My muscles start to do this certain twitch, and I know it’s going to happen. I would say that’s the worst part, knowing and not being able to do anything, being terrified because there’s nothing to stop it and no medicines or resting or special things can treat it. It’s uncomfortable but I can work through it and I do until my muscles start to drag, and are so heavy I can’t even move. It’s frustrating, and scary.

Then my nerves start to fire, and it starts as a light tingle across my skin, escalating into hot pokers over every inch of my body. The heat and pain intensifies and all I can do is cry and hold as still as possible and try to remember how to breathe until it goes away. It hurts to be touched, by anything. People, clothes, even a feather feels like glass. And eventually, it’ll start to subside. And when my nerves have exhausted themselves, I’m so completely drained, I have nothing left. Sometime this process takes a few hours, sometimes it has taken a few days. These are the worst moments of my life when I start to believe the only feeling worse is hell, and honestly it scares me straight a little for fear of going there. In addition to dealing with pain, I have to handle the guilt of knowing I let you down, again.

Sometimes I wonder if I did something to deserve it, and other days I know that it’s not my fault, and it’s not your fault that you don’t understand.

You don’t get it until you get it. And I pray you never have to experience anything like this. This is only one part of dealing with the mess that is my body.

Please understand, I never mean to let anyone down, and I wanted to be there.

Thinkstock photo by domoyega