Chronic pain is a world. It profoundly affects our perception of self and reality. It affects us mentally, physically and emotionally. It can break us and make us, and quite frankly, do both. It is suffering and perseverance. It is coping and not coping at all. In this world we have to understand it is a bubble world. It is different than the reality of someone without pain.
And yet, all of that turmoil, change, and adaptation is under the skin. It is an unseen world. Unknown. And perhaps even unknowable. It never ceases to amaze me when I think of the profound impact and raising awareness, how much depth there is to the experience.
I have was writing a fiction piece and the character said chronic pain was like suffocating and choking, like never getting enough air. Choking on the pain and existence. I have myself said it is a life of inches. People move a mile a minute it seems. While we crawl and suffer for inches.
But there is a lot more to the experience of suffering than that. There is a sense of constant ‘overcoming’. A sense of perseverance. A sense of enduring. Of constant survival, if not thriving, then surviving. Not the victim, the warrior.
Then there is the constant maintenance that comes with chronic illness. All the day to day things we do to ‘maintain’ the pain and the disease itself. Not to mention our actual goals to achieve a better quality of life. And setbacks. And small victories.
There is the hefty emotional toll that has to be looked after as well. Constance self-care isn’t just physical it is mental and emotional as well. Not to mention comorbid mental illness that is so very common with chronic pain… because it is Pain and it is a trial to live with.
It is no wonder it is commonly referred to as a war that never ends. With battles, small victories and retreats but never an actual victory or end. No wonder it comes with fatigue… as we are battle worn soldiers.
And out of all that comes a lot of thoughts and perceptions about our disease and the pain. The guilt. The feeling on is a burden. Not a productive member of society. Not pullings one’s weight. A failure. The stigma often is we should blame ourselves for being ill… and then we blame ourselves for being ill. There is a lot of external stigmas but then again we internalize a lot of that stigma onto ourselves, sadly.
And yet, we can explain all of this and still never make it KNOWABLE to someone. Living in a pained body is an experience you have to have to understand. How the pain is a constant presence. How exhausting that is. How it consumes so much that it is hard to think though. How deep inside you may just feel overwhelming tired of the battle. That you may have had suicidal ideation… thoughts about the pain ending. That some days you don’t even know how you made it this far or how you can go on. But you do. But the depth of the pain, its weight on us, the deeper, darker thoughts, the feeling of trying to get things done with pain and fatigue weighing you down… all this is so unknowable.
And it is always a little sad for me when people I thought had grasped my suffering say something that tells me they really don’t. And maybe simply can’t. Maybe you can’t cross the line until pain is chronic and daily. When it is severe and it presses against you constantly, steatling your capacity, functionality and productivity.