Abstract
It's hard to describe the feeling of solitude that comes with pain. This solitude is magnified by the sense that only you can advocate for yourself when what you feel is fundamentally unknowable by others.
During my third year of medical school, I suffered an agonizing disk herniation that pulled me from clinical training for substantial periods of time. My clinical training, although empowering me to understand the pathophysiology of my disease process also led me to understand that I had to be my own advocate in the midst of my pain. If I didn't collect all the relevant information for my doctors to consider in their rapid-fire assessment and planning, who would think to tell them? Who would tell them that it took me three hours of limping and moaning to finally arrive at an upright position on my heating mat, let alone to be able to work?
Who would tell them I canceled every social engagement for fear that I would not be able to enjoy the company of others in the presence of the uninvited tenant in my body? How could I tell them any of this when my own voice was trapped by my clenched teeth?
In her seminal book, The Body in Pain: The Making and Unmaking of the World, Elaine Scarry famously writes, “physical pain does not simply resist language but actively destroys it.” She goes on to detail how in its indescribability and in its physical wrestling of control away from the sufferer, pain “shatters” our ability to speak. 1
As a medical trainee, having had medical knowledge while undergoing this painful experience was helpful to assuage my fears and anxieties, but only when I felt well enough to engage with reality. In my doctors' appointments, I often felt at a loss for words, as I could not think clearly because of the excruciating pain. A herniated disk, I knew, is merely an intervertebral cartilaginous disk bulging and compressing the spinal nerve root, causing aberrant signal transmission in areas of this nerve's distribution.
And yet, regardless of the absence of actual pathology in my leg distal to the nerve compression, when the searing pain ripped down my leg, mimicking the pain of a muscle spasm, all I felt was the terror that my muscle was dying. When my low back pleads to the phantom knife to end its deep, twisting, scraping of my bone, I knew that it was merely the powerful effects of overzealous inflammation. But what I felt then was that my spine was being irreparably scraped away, weakened, breaking, crumbling under the weight of my own torso.
People often say that suffering is temporary, which was luckily true in my case. Yet the thing about severe pain is that it so profoundly consumes every bit of your conscious experience that it severs your connection to any past memory of wellness or a future promise of relief. It is so pervasive and arresting an experience that no matter how logical and aware of facts and likelihoods you are, in that moment of boundless pain, your life is not a continuous terrain to navigate but a volcanic eruption, smothering your experience with fumes and ash, stifling your breath, let alone the ability to speak. It is strangely the most centering experience, in your body here and now, and the most abstract, as you are pulled away from your sense of self.
When the veil of pain lifts, it slowly frees the mind to perceive again. Gradually the world regains color. As my pain medications took effect, I wondered out loud to anyone who would listen, as though in a frenzy to hear my own voice again: are leaves always so green? Has this particle board always lined the underside of the bathroom counter, and has it always been so granularly textured? Dust is so large; how do ants feel when navigating it? Relief from pain makes reality more palpable, more speakable, more alive.
Pain management is thus not merely a palliative balm; it is life-giving. It frees the mind from the body's neurophysiological tyranny, allowing engagement and re-entry into the world of others, unfettered by the deep subjectivity of suffering. It gives us the ability to speak again.
I feel immense gratitude for having had a team of pain management specialists and physical therapists and access to pain medications that were essential to my recovery, all allowing me to live a full life again. Yet with this gratitude I feel a responsibility to attend to those who cannot speak through this pain. I think now about the half of the global population who fall into the “global pain divide,” 2 for whom access to consistent pain management and palliative care remains elusive. I think of how alone sufferers of pain in other regions are in their unheeded agony without coordinated advocacy to treat their suffering.
Although it can be daunting to take up the mantle of structural change as an individual medical trainee, I hope that by participating in international collaboration and advocacy efforts, I can take small steps to uplift the voices of those for whom access to pain relief and palliative care are absent globally. By joining the International Association of Hospice and Palliative Care Advocacy Program, 3 I am learning how to be an effective advocate for global access to pain medications and palliative care.2,4
It follows from Scarry's powerful insight that if physical pain destroys language, then inequitable access to pain relief privileges the voices of only those lucky enough to live in high-income countries where pain relief can be easily sought. As my body and my voice have grown stronger in my year of recovery, I want to never forget how a simple pathology such as a disk herniation can cause profound suffering, even with all the privileges of health care access that my life in the United States has given me. I hope to use my own voice to advocate for equity in access to pain relief and therapeutics on behalf of those whose voices have been quelled not only by their ailments but also by the inequities in medication access that silence millions of people worldwide.