I live in chronic pain and I have, for the most part, for more than a decade. I suffer from an acute degenerative condition throughout my entire spine that has resulted in half of my spine being fused and the other half severely degenerated. I have also had three major joint replacements, each of which has had its own measure of acute pain. There is never a moment when I am pain-free. But I am not alone! Studies have revealed that as many as 1/3 of Americans suffer from chronic pain due to a plethora of medical conditions costing as much as $635 billion dollars every year.
It has been my experience that about all the medical profession has to offer to deal with pain that is covered by insurance are narcotic drugs. Things like massage therapy, acupuncture, biofeedback and other pain management therapies that may be helpful in the management of pain are not covered by most insurance providers and not covered by Medicare. The costs for these alternative therapies can mount up very quickly.
In discussing this issue with others who suffer from chronic pain I have heard several recurring themes:
- Physicians were often impotent in the face of the person’s pain, not knowing what to do or how to deal with it. Generally speaking, the medical community seems to be ill-equipped to deal with the manifestations of chronic pain.
- The person’s pain was sometimes minimized being told they were exaggerating, or their pain was “all in their head” and were often sent away with no real options.
- Some experienced a lack of understanding of chronic pain by even their immediate community. For example, I have had several conversations with others about my chronic pain issues, and have suggested that I would be willing to try medicinal marijuana if my pain became severe enough. Most failed to understand why I would do such a thing, not even to mention it being cost prohibitive anyway. Others with whom I have expressed my situation have sometimes offered cheap advice or dismissive clichés and have not really listened to the depth of my pathos.
- The relentless nature of chronic pain affects one’s entire being: physical, mental, emotional and spiritual.
- The person often ends up confused, frustrated, feeling alone and helpless in finding an effective approach to dealing with their chronic pain.
The Institute of Medicine of the National Academies in a 2011 report said the nation’s health care system has largely failed Americans in pain and calls for a “cultural transformation” of the way in which the United States approaches and manages patients with pain. I agree with that statement, but at the same time acknowledge that the issue is complex and answers are not easy or obvious. But that should not stop us from embracing this issue as one of the most serious health issues facing us as a nation.
A few years ago I wrote this poem when I was at a very dark place in dealing with my chronic pain, a place I sometimes return to. I offer it in this blog in order to share with others a glimpse of what it is like to live with chronic pain.
Like it predator, it stalks me 24/7
relentless in its pursuit to devour me a little piece at a time.
Its goal is to defeat my spirit and distort my being
so that who I once was will be unrecognizable – devoid of the grace that once punctuated my soul.
Most days we battle to a stalemate my foe and me;
but I dare not let down my guard for a moment for fear of being overwhelmed.
Is this the best I can do – fight courageously to neither loss nor victory?
Is my fate to merely cope, half alive, in this pain-riddled purgatory until I die?
Or have I lost already, for chronic pain seemingly exerts little effort in its torture of my soul while I expend every ounce of strength just to hold my foe at bay.
Is surrendering to my antagonist inevitable and the best way out?
If so, why not just give up and not prolong the agony?
What merit is there in my struggle?
Does my noble resistance affirm my dignity – or make me an even greater fool?
I confess I do not know, but I still fight on with every ounce of strength
not knowing why. Is hope of victory a misguided delusion?
Perhaps it is all I have left – just the fight;
for when I fight I know that I am still alive
and acknowledge that I am still worth the fight
and in my foe’s face, affirm my dignity – or then again, maybe not!
Maybe all is vanity.