The first part of this series has been published on fibromyalgiaresources com, and can be found here:“Negotiations With My Body: Part 1.” Although each can be read alone, I encourage you to go read that one so you have the full story. The plan is for this to be a series, so subscribe, follow, or visit often to catch the next installment.
I wrote this letter on a really bad day, trying to cope with the pain and emotions that had been getting to me for awhile.
We’ve been through a lot together. It’s been an adventurous 39 years. The first 18 weren’t too bad- just some broken bones, childhood illnesses, and, of course, the weight. Back then, my weight was the worst of my problems. I eventually accepted that you just don’t metabolize food as well as the average person, so I made changes and they mostly worked. Maybe because you knew what was coming, and that it was going to get worse.
Remember when you used to be able to handle working all the time, and still managed to have a social life? It seems like another lifetime. We had a lot of fun, and maybe caused a little bit of trouble, but we got things done. Maybe a little too well, because now it’s pretty rough.
I really wanted to keep working, though. I didn’t want to give up and admit that you just weren’t up to it all anymore, so I pushed. And pushed. Now you might shut down over a trip to the store that only takes 10 minutes. I don’t even know what to do with you anymore. You frustrate me, but I haven’t given up on you. I don’t know how long you’ll last, or how long you’ll be mobile, but we’re going to make the most of what you have left. Even on the days I don’t want to. We’re going to because we have to.
I often see myself in different aspects. In my head they each have their own little character that all look like me but with different details. They fight with each other. Sort of like Jane from Doom Patrol, though not nearly as useful since none of mine have the typical comic book superhero powers. The two that most often seem to battle are “hopeful me” and “chronic pain me.” Those fun little conversations generally go something like this:
CHRONIC PAIN ME: “Why do you still bother? You know you can’t do anything.”
HOPEFUL ME: “I CAN still be useful. I just have to find different ways.”
CHRONIC PAIN ME: “Oh yeah, all those ways that people could really do without if they had to. You don’t make any money or material goods, you can’t do any physical labor- basically nothing REAL.”
HOPEFUL ME: “Would you stop being so negative? Things are bad enough without making them worse. Look for the good things.”
CHRONIC PAIN ME: “Kinda hard to be positive when your body HATES you and there is so much bad.”
HOPEFUL ME: “Hard, but not impossible. Yeah, there is bad. Always will be. Get over it and MAKE some good. And SMILE!”
CHRONIC PAIN ME: “You’re so cheesy and positive all the time. It makes me sick. Open your eyes. Everyone is always mad at us for things we can’t control, and they think we’re just a failure.”
HOPEFUL ME: “Better than being hateful and grumpy all the time. At least I have a sense of humor. And my eyes ARE open. Open enough to see that we gotta put good into the world regardless of whether we feel good or not. Otherwise bad will take over.”
CHRONIC PAIN ME: “Bad HAS taken over. And why would I want a sense of humor when it hurts to laugh?” *withering look*
HOPEFUL ME: “Then just smile. Takes less muscles than frowning anyway, so should be easier.” *angelic smile*
CHRONIC PAIN ME: “No thanks.”
Sometimes the chronic pain me wants to be really violent and just outright angry. Like, really angry:
CHRONIC PAIN ME: “That person just looked at us. Throat-punch them.”
HOPEFUL ME: “What?!? Are you crazy? You can’t be acting a fool. Especially not over someone just looking at us.”
CHRONIC PAIN ME: “Why are they looking?!? I don’t wanna be looked at.”
HOPEFUL ME: “Well you’re just gonna have to get over yourself.”
CHRONIC PAIN ME: “Ha. No, I don’t.”
HOPEFUL ME: “Uh, yeah ya do. Just calm down.”
CHRONIC PAIN ME: “How am I supposed to be calm when everyone else gets to walk around all normal and I’m in tears with each step?”
HOPEFUL ME: “You just…….do. Deal with it.”
CHRONIC PAIN ME: “YOU deal with it. If I get a chance, I’m punching people.”
HOPEFUL ME: “Well, good thing you’re not in control then, huh?”
CHRONIC PAIN ME: “Good for YOU. Hrmph.”
Or sometimes it’s not so violent, just mean:
CHRONIC PAIN ME: “You better tell this guy my patience is wearing thin before I decide to take over and strangle him.”
HOPEFUL ME: “Patience, evil one. He is clueless.”
CHRONIC PAIN ME: “So? Why is that my problem? He won’t be clueless anymore once I flip out and bring it to his attention.”
HOPEFUL ME: “Remember our talk about patience and understanding? We want people to have that with us, so we have to do the same for them.”
CHRONIC PAIN ME: “Well, WE wouldn’t be bothering them with stupid things knowing they felt like we do.”
HOPEFUL ME: “Maybe he doesn’t understand what it’s like to feel this way.”
CHRONIC PAIN ME: “I can help him out with that.” *cracks knuckles*
HOPEFUL ME: “Or we can just be mature and patient and explain politely to him.”
CHRONIC PAIN ME: “HE WON’T CARE, or he won’t believe us.”
HOPEFUL ME: “Then oh well. We move on.”
CHRONIC PAIN ME: “Still say we should teach him a lesson.” *pouting*
HOPEFUL ME: “We are. Just not the way YOU think we should be doing it.”
CHRONIC PAIN ME: “One of these days…..”
Sometimes, the chronic pain me wins, and I react to someone in a way I shouldn’t because I’m having a bad symptom day. It happens. More than I’d like. I mean, it happens to perfectly healthy people, too, so I have to say I’m pretty proud that I’m able to resist the bitterness most of the time.
The point is– I have all the bad thoughts, too. You aren’t alone, and it doesn’t make you weird if you give your body, and different parts of your brain, little imaginary personalities if that’s what helps you cope. We have to find any little way we can to cope with these conditions that want to torture us every day. Doing whatever you can to survive the day doesn’t mean you’re weak– in fact, it means you’re a warrior because you aren’t giving up.
The only way we fail is if we choose NOT to try to see the good in people and situations that arise, or if we just give up, or take advantage of situations. When we do that, we rob ourselves of all the experiences that make life worthwhile. Ignore any toxic people who make you feel like you aren’t good enough, or try to make you feel like your conditions aren’t legitimate issues. YOU know what you feel like. YOU know what symptoms you experience. They don’t, and if they’re not willing to learn about, and understand, your conditions, they aren’t worth you stressing yourself over. You deserve the same respect and consideration as anyone else. Just remember to check YOURSELF for negative behavior, too. Yeah, we go through a lot everyday, but we don’t have a right to treat people badly because of it. If you have to, argue with yourself like I do. It’s actually been pretty effective at keeping me from snapping at people, or just generally being hateful. Although, I have not quite yet learned to control my facial expressions as well as my actual actions. Yet. Maybe one day. Until then, I’ll just keep trying to stay as positive as I can, and keep arguing with my body and “bitter” side.