"Do Not"

If you know my nephew Ben then you can hear his little voice saying this phrase as he waggles one tiny 3-year-old index finger back and forth at you. I hear it every time I think of this phrase.

Sometimes I think that if this illness, disease, or whatever health issue it is that I have had lurking in my body the last dozen years (yes, I said dozen) were shown as a giant X, or perhaps some scary looking distortion of my body, then people would believe me when I say I'm sick. When I miss an event. When I say I don't feel well. When I have to cancel because I'm in too much pain. Instead, because I look normal, people think I'm mean, a disappointment, a flake, or selfish. Do you even know how painful that is? How hurtful and frustrating? I'm already well aware of how much life I am missing and you just had the nerve to rub it in my face and make it all about you. Awesome. Friend.

Sometimes I think it would be easier if you could see my pain.

What if my insides were on my outsides and you could see my scarred and twisted tissues and organs. Would you believe me then? Would you still say I'm a liar and a fake? What if every time I felt pain, you felt the same pain? Would you still tell me to suck it up and try harder? What if every time I cried because I missed yet another event I was looking forward to, you had to hold my hand and tell me you understood instead of talking about me behind my back? What if?

Just because you may see me with hair and make up done and looking normal doesn't mean I'm fine. What you don't know is how long it took me to get ready, how much pain I was in, and how many breaks I had to take just to get that simple task accomplished. What if you really knew what my day was like?

When sitting, standing, walking, bending over, sleeping, cooking, working- every move hurts. Every move you take for granted. When nothing eases the pain. When you can't remember the last time you slept through the night, not because you have kids waking you up, but because you're in so much pain. What if you really knew what it was like to be in my shoes? I know my condition could be so much worse, and trust me I am forever grateful, but it still doesn't give you the right to spout the it-could-be-worse speech and blow me off or throw in the towel.

I try so hard to stay positive, because it's the only way to get through each day and find even the smallest victory, but sometimes when I hear things that people say about me I can't help but think, "Do Not."