Remembering to LIVE with Chronic Pain

Chronic pain. It’s a polarizing subject. To those who have it, it’s a lifestyle. To those who don’t, it’s at best a mythical beast, and at worst an overused excuse for laziness.

As someone living with chronic pain, I have often fallen into a trap that many people don’t realize they’re setting for me. The trap of surviving, instead of truly living.

And it’s not for the reason you think.

Like many others, I find myself holding back on the days I could actually be out experiencing life, and sometimes this is because I’m worried about doing too much and triggering a flare. But far too often, it’s because I’ve been judged so harshly in the past for daring to have fun.

People seem to have this misconception that living with chronic pain means being bedridden 100% of the time. That I should be barely able to move off the couch, and certainly not ever leave the house to go shopping or take my child to Chuck E. Cheese’s. And many who have seen me do those things on days when my pain was manageable, use that as evidence to tell me bluntly that I have imagined the pain. That it comes and goes when it’s convenient for me. That I use it as an excuse to get out of things.

I should have been livid. Every single time, I should have stood up and told those people the way chronic pain REALLY works. But I didn’t. I began to live my life the way people said I should. I chose to survive instead of thrive.

Well, screw that!

I’ve recently found my voice, and it’s helping me in ways I never imagined. More than anything, it’s helping me to LIVE. I live for my husband, my four year old daughter, but most importantly, I live for myself!

Yes, there are days when I’m bedridden. There are days when every single joint in my body aches so deeply I can hardly breathe. Some days, I’m stricken with muscle spasms so strong I can’t eat, drink, or sleep. But there are also days when the muscle spasms are minimal, and only one or two joints hurt at a time. Do I still have chronic pain on those days? Yep. I have chronic pain every day. It’s chronic. That’s what that word means. But can I also do simple things, like take a walk or watch my kid play at the playground? You bet!

And I will not feel guilty for that.

Neither, my sweet friend, should you.

Your pain and your illness are going to get you down. You’re going to have bad days. And sometimes, the people around you may break your heart with thoughtless words about how you should be living. But no one gets to decide what your life looks like, except you.

So, whatever LIVING looks like to you, on the days you are able, go do it!

Today, living means homeschooling my daughter and maybe baking some quick cookies. Because I want chocolate. And I’ll probably share some with the kid. But I also know that once the cookies are made and the kitchen is clean, I will be out of spoons for the day. This isn’t one of my best days. But it also isn’t one of my worst. And I am done hiding out because people think I’m supposed to. I’m taking back my life.

Who’s with me?