September 17, 2016 didn’t just mark 9 years my oldest son has been breathing in the air of this world, it also marked 8 years that I’ve been writing this blog. Eight years of over-sharing madness. From marital problems to childhood illnesses, mortifying moments to momentous accomplishments- I’ve put almost all of it out there. What I share is actually carefully chosen, much to some people’s surprise.
In the thousands of blogs I’ve posted here, one subject that has only been mentioned a handful of times is my chronic pain. It’s taken over so much of my life that this blog has almost been an escape from it- but here’s a sobering fact: I live with pain every single moment of every single day.
Every day I’m surrounded by a mix of people who know about my pain and understand what I’m going through, and those who look at me and see “normal”, because to most people, I don’t look like I’m in pain.
Like many of those who suffer from invisible illness and/or chronic pain, that is on purpose. What we show you, what we allow you to see is carefully cultivated- much like this blog. We don’t want to be looked at differently. We don’t want pity, or judgment. Even people close to me don’t know the full extent of what I go through on a daily basis.
They don’t know that the pain I experience differs, not just day to day, but hour to hour. They don’t know that, while my pain may be physical, it radiates into my emotional state as well. That I never know if one wrong move can make the rest of my day, or the rest of my week, miserable. That I spend a lot of time worrying that I’m going to do something stupid and set myself back. That sometimes, even though I try hard not to let the pain rule my life, that it makes it so I don’t want to go anywhere, or do anything. Even write. Even get off the couch. They don’t know that I don’t avoid making plans to be a bitch, but because I don’t physically know if I’ll be able to keep them and I hate to say I’ll be somewhere and have to cancel. They don’t know that when the pain gets bad, it makes even the simplest tasks seem impossible, and it makes me dread doing things I normally enjoy. It makes me NOT feel like me- and living in a body that doesn’t feel like it belongs to you anymore, like you have zero control over it, is devastating.
How can you be supportive of something that is nearly impossible to understand unless you’ve experienced it yourself?
“How are you doing today?”- It’s a loaded question on both ends. Do they care? Do they really want to know the myriad of pain I’m experiencing today? Do I really want to explain it? Does it matter? What good will it do?
But as exhausting as it is to explain, because I can’t just say “bad”, “good”, or “okay,” I appreciate that you asked. I appreciate that you didn’t just look at me and assume I’m fine. I appreciate that you know and understand chronic pain exists, even if it’s invisible. I appreciate that you care enough to sit through my explanations, or don’t pry when I just shrug and say “okay.”
Thank you for being you, and for accepting me, and those like me. The world could use more understanding in it.
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