Documenting chronic pain

When I decided to start blogging about my photography, I envisioned a beautiful wedding splayed across the screen, and a truly amazing love story that flowed seamlessly from the heart. That’s what most photographers do, right? It’s one big advert for your talents, sure to capture a few clients.

What came to me wasn’t pretty. It wasn’t lovely or happy. It was gritty and raw. It tells a story that might not have a happily ever after.

My story.

This photo series is solely for me. I put this out into the world so I can be free of holding it inside. It has festered and boiled over, affecting every aspect of my being. It has made me see everything with a cynicism that terrifies me.

I’m done hiding. I’m done with the taboo that is chronic pain. I’m done with the stigma of drug abuse and laziness. I’m done hearing that I look fine.

I’m not fine.

As I laid on the sofa on my heating pad at my lower back and an ice pack on my neck, I became fed up. I’ve gone through every emotion, prayed to every God. I’ve screamed and I’ve begged. None of it changed this. What is left after you’ve fought for fair medical treatment for years? What is left when you’re told it is in your head, regardless of what the scans say? What could possibly be left when you hear you’re “too young” to have spine surgery, even though you’ve done literally every other possible treatment?

You become silent.

When you’ve done something with yourself and you get the recognition you so badly want and need, it feels invigorating. When you succeed after so many told you that you’d never, you’re vindicated. When you find what you believe is your purpose, it’s fulfilling.

When it’s taken from you, you lose your self-worth. And so much more.

There is the physical pain, and then there is the emotional fallout of chronic pain. In the acute stage, you have fears but you also have so much hope. You follow every treatment plan, no matter how insane it may seem. You’re diligent about getting your health back. Yes, it hurts. Why hasn’t it stopped hurting yet? You’re doing everything they’ve told you to do. You’ve even started seeing a pain psychologist because you’re starting to cry a lot more. You’re starting to feel helpless and even more scared. Your family begins to notice that you’re just not getting better.

You start trying to will the pain away. You push yourself harder and harder to gain back your freedom. You discontinue all medications. You experiment with yoga and more counseling. You go back to physical therapy and stay for a year. You believe you’re healing. You went on a 3 mile hike with your spouse. He’s smiling again. You’re able to be intimate and enjoy it again. You can drive again. You’re taking your child to the park. Maybe it was all in your head?

Then one day you hit the brakes too hard. You feel that awful twinge and know what’s coming. You make it home but can’t move your neck or shoulders. You turn on cartoons for your child and rush to hide yourself away in your room. You lay down on your heating pad, and can’t keep the tears from your eyes as you call your doctor.

You’ve gotten through the worst of it. But they’ve started calling these painful episodes “flares” at your pain management clinic. Your neurosurgeon tells you he would do surgery, but the insurance company won’t approve it because there’s not enough evidence that this is just a spinal issue. You hear words like “fibromyalgia” and “Myofascial Pain Syndrome”.

You don’t care what it’s called, you just want it to stop.

You become angry. You start looking for another opinion. Meanwhile, you’re inundated with injections and nerve testing. More medication.They say you’ve lost reflex in your arm. You have atrophying and nerve pain but the insurance company still says it’s in your mind.

You have “good days” and “bad days”. Your home is messy, and your spouse comes home, only to clean up. You feel guilty and try to keep up, but it’s hard. He seems mad, but still tells you he loves you. You see him go out for a run and cry because you can’t do that anymore.

The depression is all consuming, but you hide it. You hide it because the reality of what you’re going through is too much for friends and family. You stop getting invited to parties and events.

You find yourself able to do things once again, but sometimes with pain medications. You slowly start to exercise again. It feels so good to be out of the house. You’re able to meet your friend for lunch. You’re so scared, though. You don’t want to get addicted to the medicine. You talk to your doctor about it and he reassures you.“You are hyper aware, and that’s a good thing. You take such a small amount, and you’re a responsible woman. You need this right now, not forever. YOUR PAIN IS REAL.”

You need another scan, because you’ve hurt yourself again, and you’re headed to see a new surgeon. You’re scared to feel hope. This roller coaster has tossed you around so much. You’re just so tired. Your relationships have all been challenged. You still grieve for who you used to be. You’ve gained weight. You can’t help but silently pray for something to give. On your bad days, you struggle to get up in the mornings. On good days, you’ve learned to slow down. You don’t need to go full throttle to be enough. You ARE enough.

Today you feel okay. You plan to take your child to the park, or do a craft with him. He comes home from school and is so happy that he gets to do something with Mommy. He’s talking a mile a minute. “Did you know that today was the best day ever?” You ask why. “Because I got to draw with you. I love you, Mommy.”

I love you, too.

Say it. Scream it. Whisper it. Think it. Know it. The pain may be a part of you. But YOU are not your pain. Just say it.

Today was a good day.