What Everyone Should Know About People Living With Chronic Pain
By John Ptacek
Like a billion and a half other people in the world, I experience chronic pain. It is as unstoppable as the seasons, and I have given up plotting against it. However, the aura of acceptance that surrounds my pain does nothing to block it. It hurts, with varying degrees, nearly every hour of nearly every day. And, to boot, it wakes me up most nights.
If this sounds like a hellish existence to you, then chances are you do not suffer from chronic pain. If you did, hellish is probably not the word you’d reach for – even though this would be an apt description some days. You would have learned that such exaggeration adds an unnecessary layer of pain, a psychological component that can submerge an already floundering pain sufferer. Having experienced this double whammy at the onset of my physical symptoms, I can attest to its destructive power. It is like being knocked to the canvas and then stomped on.
Had someone told me that my life would some day evolve into such a painful enterprise, I might have said my final goodbyes, smoked a deliciously guilt-free final cigarette, and jumped off a bridge. But imagination has little in common with the realities it attempts to touch. I work, I play, I engage in intimate relationships and in general lead a productive life – all while accommodating the continuous presence of my pain. It is like being the parent of a demanding two year old who never ages.
The good news about my pain is that it doesn’t usually knock me completely out of action. I can often still attend social functions, and usually without anyone knowing why I am clenching my jaw and flashing an S.O.S. expression at my significant other.
“Well, then how bad could it be?” you might ask.
You see, that’s the bad news, being cursed with a condition that doesn’t quite make me howl.
If my pain were such that it would hospitalize me or confine me to my home – and my heart goes out to those who have been dealt this hand – no one would confuse my absence at a social event with an unwillingness to be there. But because my condition does not require an extreme level of care, such absences come with an asterisk. “Oh Lord, not that excuse again,” I imagine people groaning between gulps at the hors d’ oeuvres table. “Someone who looks so healthy couldn’t possibly be so sickly.”
This is largely my fault. People are mystified by my faulty physiology because I rarely discuss it. For me it is a pointless conversation. It’s there, it will always be there, I don’t like it, but there it is. And when it does come up in conversation, often the responses fall into two categories: sympathy bordering on pity (ugh), or competing pain stories (grr) meant to establish a common bond. I nod back empathetically, knowing that I’d be yodeling in the shower if I could trade places with them.
On bad days I am thankfully able to sit in a chair and read, usually with Chopin or Brahms leaking on low volume from my tinny iPhone speaker. Sometimes it helps to switch to white noise. It feels like a soft blanket around my shoulders. On really bad days reading is out of the question. It’s too hard to concentrate. I park myself on the couch and try to lose myself in a movie, any movie.
It’s on those really bad days that my coping strategies begin to erode. I am normally fond of pointing out all the joys in my life to those that express honest sympathy for my condition, but when I am redlining on the pain meter, such thoughts are out of reach. I feel isolated and lost. I stare out the window pining for the context that normally sustains me. It doesn’t come. It can’t during those times. I keep a note in my sock drawer reminding me to indulge myself without guilt and to not make important decisions when I am in this gauzy, compromised state. I don’t exactly think of suicide, but I do wonder how long I can ride this bronco and remain satisfied with the shaky view it affords me of the world.
In the same way that I can’t possibly know what it’s like to experience postpartum depression, I don’t expect others to understand what it’s like to experience the same pain day after day after day. But I can ask them to consider that persistent pain has a way of making everything else come in second place, even things that may be of supreme importance to them – holiday dinners, weddings, funerals, business meetings, play dates, court dates, and any other activity requiring sustained presence. Pain makes a person dance to its wicked beat, drowning out all other background noise. It’s not that I don’t want to rise to your expectations, it’s that my physiology doesn’t give me much of a say in the matter.