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Why I No Longer Keep My Chronic Illness Struggles to Myself

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When my pain is at its worst, I can’t remain silent. When the fire and the ache wrap around each finger, each toe, each wrist, each foot, each elbow, each knee, and each rib, I need to be able to talk about it. Pain has me in its grip, squeezing until I must speak its name.

If I didn’t talk about it, you’d never know. My face is calm, my stride steady. I can even smile or laugh while I tell you my body is a monolith of ceaseless pain.

I am one second away from screaming. One second away from hurling a glass to the wall to make visible the shattering beneath my skin. I am one second away from sobbing, but at most I might let two tears sneak out the corner of my eyes before I quickly wipe them away.

I don’t scream, or cry, or break things, but I do talk about my illness. I announce to my friends: This is rough. I am not fine. This is part of my life, and if you are my friend I will trust you enough to share my sorrows as well as my joys.

I worry it is too much. The bounds of compassion and understanding only extend so far. No one likes a whiner, and I like to be liked.

I hold back. I ration my honesty about my pain. I dole it out in digestible bites and hope no one feels too full.

I am rewarded for my reticence. My doctor said, “You’re not a complainer!” My colleagues said, “I’d never know you were sick if you hadn’t told me.” Everyone says, “You’re so strong!”

We live in a society enamored with toxic positivity. If you voice your despair too loudly or too often, you may be admonished to “Look on the bright side!” “Stay strong!” “Keep your chin up!” “Be grateful! Be thankful! Be mindful!”

I am grateful for my life. I am thankful for my blessings. I am mindful of my many privileges.

I am also full of pain.

This tyranny of optimism makes the false assumption that admitting your weaknesses will diminish your strength.

I am not negative; I am honest. I have not given up; I am struggling. I am not bitter; I am angry. I am not depressed; I am grieving. I am not suicidal; I am weary.

I cannot carry the burden of this pain and the weight of a candy-coated shell of positivity.

“Fear of a name increases fear of the thing itself,” Dumbledore said. I speak my pain, and I erode its power over me. I acknowledge it exists, and I no longer feel alone in my fight.

I am resilient. I am strong. I persist despite my pain because I am not silent.

Getty image by Isaxar.

Originally published: August 2, 2021
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