Living with chronic pain is a constant struggle. It affects every aspect of life- emotional, physical, and mental. Some think they understand or know what it means to exist every moment in pain. A friend meant well when she told me years ago, “It must be difficult, I know when I get a headache it just ruins my day.”
She meant well, but having occasional pain and living with it isn’t the same thing. Episodic pain, as bad as that is, has an endpoint. You know at some point in the future it will go away. Those of us in chronic pain don’t share that reality.
I try to explain it’s like having a toothache… forever.
Or a better analogy that everyone can experience, try holding a glass of water in the air for 10 minutes. Sounds easy, but it’s not. After a couple of minutes the fingers in the hand start to cramp and the muscles in the arm spasm. By five minutes, it’s progressed to the upper arm and chest. By 10 the entire arm is shaking and in pain, impossible to continue. And that was just a few minutes!
Accepting we will never be pain free seems impossible. But in order to have a fulfilling life and learn ways to manage it on a daily basis, we must. Searching, asking, believing there must be, has to be, a fix that will end the suffering is all too often a way of life for some. That imperative pivot from “ fix me” to “ help me learn ways to live my life with pain” is crucial. It’s about accepting lifting the glass of water isn’t the hard part, it’s keeping it in the air.
As shared in last weeks post over 50% of those who responded to a 2021 CDC study stated they had suffered from some type of chronic pain in the past three months. Add in all those affected by someone who lives with chronic pain e.g. a spouse, family members, friends, co-workers… there are few untouched by the emotional, physical and financial impact.
Yet with all these widespread issues we rarely discuss, let alone acknowledge, its existence.
Because it’s seen as a weakness and we’re told to suck it up or put on a happy face. In order to survive, many of us perpetuate that attitude by making sure our pain is never seen or heard. Others think it’s “in our heads” and not real or we wield it like a crutch when it suits our purpose, diminishing the devastating personal cost. Yet last weeks post clearly proves this isn’t accurate. Pain, even in the absence of a specific source is still pain.
I have been attacked verbally by strangers who were sure I stole a family member’s handicap card and parked in that spot when I “don’t look handicapped.” The worst is when family members or friends, those who know better, have shamed me when I missed an event, spent it in a spare bedroom lying down or had to call an early end to an outing because the pain was too much to bear.
Chronic pain affects every aspect of our lives. Before the last five level fusion in my thoracic-lumbar spine, just standing up straight and walking more than a few feet was more than I could imagine attempting. I remember sitting in front of a pharmacy at the end of a particularly long work day wondering how I’d make it through the store to pick up a muscle relaxant that had been refilled. The thought of one more step brought tears to my eyes. Often the option of a cart to grasp onto was the deciding factor. Other times nothing could get me out of the car.
After that momentous surgery my life returned to the baseline I’d learned to live with for decades. Still in chronic pain, but able to function.
But moment to moment decisions are still a constant part of my existence.
Is this activity worth doing now for the pain I may feel later?
Can I make it just a little longer because I really want to see the end of an enjoyable play or movie?
Can I get up and walk, even if it’s to the bathroom, to ease the pain of sitting too long in order to extend the outing?
There’s always an internal barometer that tracks when I’ve reached the middle ground, something I’m usually very good at guessing, so I’ll be able to get back home. I’ve learned I have just so many steps in me. Once that limit is achieved nothing I do will change the fact I have to stop. Listening to my body and heading home at that point is the challenging part. Especially when faced with what others want.
Living with chronic pain means not just accepting, adapting and moving forward for ourselves but making sure we encourage those closest to us to do so as well.
Realizing certain activities are gone forever- skiing, jogging, long distance car rides, lifting items at home without a second thought, climbing a ladder and reaching for an extended period of time to change a lightbulb. I felt dependent and limited. Until I put it in perspective.
Everyone has limitations.
Every age group.
From the 20 year old who has debilitating anxiety, the 30 year old who always knows where the restroom is located in case his gastrointestinal issues act up, or the 40 year old with newly diagnosed diabetes. They’re just different from mine. We all struggle to accept them and live within the confines they set daily.
Life returned to “normal” after my last surgery. I can now work a long day, walk for an hour or two at a time, finish a play, drive comfortably city wide. Too many, these accomplishments may seem trivial. To me, they are life changing.
Being able to enjoy all aspects of our lives requires a safe environment as well as acceptance from ourselves and others.
Next week I’ll share some insights everyone should know about chronic pain.