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Please Stop Holding It Against Me That I Can Mask My Pain

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You see my hair done.

You see my makeup. You see my blemish-free skin. You see a healthy glow.

You don’t recognize the tired, strained look in my eyes, because you’ve never been exposed to a truly “healthy” version of me.

Forgive me for putting on the show.

Forgive me for pretending that everything is fine.

Forgive me for not looking sick.

Forgive my negative outlook.

Why?

Because you don’t get to see what this condition is.

You don’t see that I haven’t slept in days. You don’t see the bruises lining my legs because the heat has caused a rash on my skin.

I understand that it’s a hard thing to wrap your head around.

I mean I get it. I stood at work with a pain level nine. And as I walked around the store, it felt like someone was pushing from the inside of my skull down onto my eyelids. I had to forcibly hold back tears because the pain was so intense. I’d accidentally wander into an area where the sunlight was bouncing off of something, and it would literally stop me in my tracks as I was struck by reflections. I went back and forth cradling my head because my fingers were icy cold and it felt OK as momentary relief.

My blank stare isn’t noticed. I passed up more customers claiming it was another person’s turn, simply because I couldn’t move and the thought of interacting with someone who may have questions was too much.

My brain just whirred with horrible thoughts. Do I ask to leave? Again? How will that look? I’ll be in the same amount of pain when I get home, so really, what’s the difference? At least here I get paid. Maybe this is it. Maybe I’ll have to call home and explain that I can’t work. What if this is it? What if I’ve reached the point that I truly can’t hold a job. How do I ask my retired parents to support me? I can’t end my lease early, I just got it in March. I can’t drop out of school, I’ll lose my insurance, and oh my god my drugs cost more than tuition. 

I should have been laying in some hospital bed.

I probably should have checked myself in Saturday night when it got this bad in the first place.

But, I know from my history that it really is only a temporary fix. The most they do is put me to sleep with a strong dose of Benadryl.

I keep pushing myself. Probably harder than I should. I keep saying that I have to go out. I have to maintain friendships and relationships.

But last week proved that to be problematic. Simply getting coffee with a friend, that resulted in pushing lunch back, put me out for two days. Stupid me, I would have been fine had I just went and grabbed some food…I mean I was in a restaurant for pete’s sake.

Grabbing dinner with family caused the same thing. I was already not in great shape, but then all of a sudden it was past 8 p.m. I was still “out.” My body was begging me to go home, and so I did. But that was too late. The horrifying pain was back and I was just desperate to make it home safely.

I’m fighting to be somewhat normal. I’m fighting to have a job and to get an education.

You don’t see that though.

Maybe its my fault that you don’t see it.

Maybe by laughing it off when I start to slur my words, I’m giving you the wrong idea.

Slurring my words is a serious warning sign. But for me, it just gives me a timeline for the inevitable condition I’ll be in a few hours later.

So, forgive me for having gotten really good at looking like your normal 20-year-old. It is the only thing I can control and keep consistent in my life.

But please, stop holding it against me. And please stop asking me to be more positive. I feel like I’m dying every second of every day, and with every week that goes by without answers or better options for me, its hard to stay positive all the time.

Originally published: July 26, 2018
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