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Please Ask About the CRPS Battles You Can’t See

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Having complex regional pain syndrome (CRPS) is like being trapped in a room filled with flames, and I’m doused in gasoline. Under my skin, everything is scorching hot, and my hands ache to rip my skin off of my bones to put out the flames. But touching my swollen skin only sends an  electrical spark of pain roaring through my veins and I have to repress a scream. I feel trapped in this room filled with fire, and I’m burning alive. The smoke is seeping into my throat and I’m fighting to breathe through the smothering pain clenching me.

This is the drilling pain that I am battling. The burning flames feel so hot that I begin to shake from the chills that radiate through my body. I hold so still, petrified that even the smallest breath is going to intensify what I’m experiencing. My face is paralyzed with a radiant smile on it. I’m externally frozen with the flames burning underneath my icy skin.

My face is illuminated by the glow of my smile as my eyes crinkle at the corners. My voice has a pleasant chime to it. I let my positivity shine outwards despite the pain that is slicing into my body. The person standing in front of me has so little control of my disease, and doesn’t deserve any negative energy from me because of my battle. This violent disease will not stop me from gifting my warmth to others.

As a CRPS warrior, I have fought a battle every day — one that you may not be able to see. I was simply breathing while I struggled to fight CRPS, but now I am learning to live in sync with this agony. I am a warrior; I am a brave woman who is experienced with this disease, and I am capable of managing my physical symptoms. But my endurance has not made my journey effortless. I, like many CRPS warriors, struggle with depression, feelings of being worthless, and body positivity. My strength has allowed me to fight to survive, even in the darkest moments.

Those are the moments when I need those dear to me to be strong for me and encourage me through my ugly truths. My loved ones support my journey and wait with me while I am processing what is happening to me. I am fortunate to be surrounded by people who support all of my  journey, and who encourage me to stay true to myself. I hold onto my warmth, and I show kindness to those around me despite the disease clinging to me. In those moments my friends are strong for me and encourage me to continue to spread my positive perspective even when dark thoughts are attempting to disrupt my happiness.

Many of us with a disability hold onto our strength so intensely, our loved ones don’t recognize when we need someone to be strong for us. Our smiles beam across the room, and we hide our needs. We must start self-advocating. It is okay to stumble and have hideous moments. Open up to those close to your heart and let them in. We must start checking in on one another because often there is something trapping our voice inside of us that refuses to let us say “I need help” or “I need a friend”. CRPS has been colloquially called “the suicide disease,” because so many of us with CRPS have lost the war. The strength that any warrior has cannot be an indicator of their mental well-being. Remember that, and be kind.

We must take initiative to ask for help, and to support other warriors. Today, make sure that you check on those you love. Check on your sad friends. Check on your happy friends. Check on your friends that seem emotionally distant. Embrace those you love, and let them know that they matter to you. Spread love today because everyone is fighting a battle that you may not be able to see.

Getty image via savageultralight.

Originally published: October 22, 2019
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