Friday, November 18, 2011

pain redux

There's no such thing as cockiness when it comes to a chronic pain syndrome. There's no room for it. Just when you think you're on a good streak, your brain reminds you that there's no cure, there's no real remission, there's just the constantly swinging pendulum of symptoms -- if the pendulum were suspended in the middle of a hurricane, swinging in an erratic 360 degrees with wind gusts sending it into an unpredictable vertical spin.

All those words you apply to someone with a life-altering illness just don't apply in this scenario. Fighting, battling, overcoming, conquering, defeating -- them's fightin' words, and you can't fight the undefeatable. We need a new vocabulary, one that acknowledges the very different nature of an incurable chronic illness.


It's such a different world. Through inspirational stories, we learn that refusing to accept limits is the way to beat an illness. Powering through and maintaining your pre-illness life shows strength and determination. That willpower and hope can beat a terminal diagnosis. Chronic illness doesn't speak this language. Refusing to accept limits results in more pain, more time lost, a longer recovery back to the New Normal. Powering through in an attempt to maintain your previous life does the same thing. Willpower and hope keep you from shortening your own lifespan in an effort to escape the pain but they don't change your diagnosis.

It isn't giving up to accept your new limitations. Acceptance is sanity. Acceptance means not beating your head against the wall. In a Head Vs. Wall battle, the wall will win. The win condition is: Not engaging in that battle in the first place. It takes strength and grace to face down the decades of pain in front of you and accept that you can still have a fulfilling life even with chronic pain factored in. It takes endurance and steadfastness to deal with the pain. Cheerfulness lifts you up, and lifts the spirits of the people around you who want to help you and can't. It's hard to be the one with a chronic illness. But it's also painfully hard to love someone with a chronic illness, to know that you can't slay that dragon for them. And flexibility is not to be underrated. It takes real flexibility to handle the essential unpredictability that a chronic illness brings to your life. When you can't predict if you'll be able to think clearly, move easily, eat without unfortunate consequences, drive, lift, balance, interact, it's difficult to hold down a job, volunteer, make a social commitment, promise your kids anything. Incorporating true flexibility into your mindset will allow you to take advantage of the good moments to their fullest without promising things you can't deliver.

Chronic illness has its own language. My battle isn't beating my illness. It's learning my new language.


  1. Thank you. It sucks that I'm sick. It sucks that you're sick. It helps that I'm not alone.

  2. I'm right there with you. Thank you so much for this post - and for giving me a lot to think about the other day... :)

  3. What a wonderful post. I'm going to print this out to reread on the bad days. Thanks for sharing.