It wasn’t the cheery snap, crackle, pop of my childhood breakfast cereal, but the sickening noise of my hip being unceremoniously wrenched out of place as I made my way into the car. Such a deceptively simple movement, transitioning from standing to sitting, had the force of a wrecking ball for all the devastation left in its wake.
This wasn’t the first time.
Pain is not a temporary state of my being but a condition of my existence. A soundtrack stuck on repeat, with every replay, faith is a faint whisper in the wind. After all, faith, real faith, requires bravery. With every wish, with every prayer, we risk heartbreak. It’s us admitting to the universe that we don’t have all the answers but trust that there must be a greater plan.
Just when I’d started to believe I had a grip on my health, it kaleidoscoped into something different. Some part of me had known this was a grim inevitability. For months, I’d been ignoring the warning signs, concealing my steadily worsening pain, my uneven gait, and stoically soldiering on. The prospect of boomeranging back to a place of vulnerability, of having no choice but to ask for help when the penalty would be my self-worth, had dread curdling in my stomach.
There’s a distinct imbalance of power when what you need has you indebted to those who discount your efforts, who deem every aspect of your life unworthy, even the parts you so proudly cobble together.
Chronic illness and disability do not exist in a vacuum where you are insulated from the opinions and judgments of others. Society’s unspoken expectations of how a life should be lived are indelible constraints that limit the discouragingly few choices we’re offered, if we’re offered them at all.
Time cannot erase the moments when I sought help only to find harm, when I reached out for understanding only to face rancor, when I raised my voice only to be silenced. Everything I thought was true and good and certain in the world was nothing more than illusion, fairy tale ideals of a child not yet tested by the ugly underside of humanity.
Even when confronted with irrefutable proof, it takes a catastrophic event for people to validate chronic pain, let alone offer the help that is so desperately needed. Far too often, chronic pain is reduced to a crutch for malingerers, even though being healthy is easier than feigning illness and disability.
There is nothing more humbling than being betrayed by your own body, of having your physical frailty mistaken for weakness of character when all you fight for is the freedom of choice that you lost along with your health. Bereft of options, chronic pain makes unwilling beggars of all of us, subject to the whims of others and forced to accept the meager crumbs begrudgingly tossed our way.
Our path to autonomy cannot be forged by those whose vision is colored by prejudice and whose solutions are divorced from the reality of the challenges faced by those living with chronic pain. The pursuit of personal gain at the cost of the common good inhibits the advancement of chronic pain, cleaves our power and renders us fragile. What we feel when we think of how people perceive chronic pain is misunderstood. Rage that only feels like sadness because it makes a toxic mix with helplessness.
But we aren’t helpless.
Pain may limit how we exert ourselves, how we move our bodies. But what we still have is our indomitable will, the fortitude to try over and over again, to manage our pain, to search for answers, to better our quality of life.
And even more important is that thing we feel every day. That compass inside that tells us to trust ourselves, that we are the experts on our own pain. Capable of making the best choice for ourselves because we live with it every day. That is our secret superpower, our unique perception that only comes from lived experience.
When we are silent, we relinquish our power to others. The terror of risking ourselves, of speaking out, of wondering “what if” is overshadowed by what we can accomplish when we save ourselves. When we choose our own
solutions. When we harness our own talents. When we leap into the unknown.
I have found purpose in the chronic pain community, with people like me, whose tomorrows stretch out into the vast unknown, a question only answered with their fluctuating health. Truly frightening and adversarial situations are the sieve through which real bonds are formed, where the watery and weak are washed through and away, and those left standing beside you are the solid units you can count on for life.
For our community to be more than a castle in the sky, to plant roots that span continents, that deepen with every generation and withstand the passage of time, its foundation must be built on the backs of our convictions, from a shared vision, our untainted desire to bring chronic pain into the light. To fight for a level of care that restores a quality of life. To break down the untruths about chronic pain that are barriers to our success.
Success for those with chronic illness and disability does not always mean achieving key life-stages at the same time as everyone else or even achieving them at all. It means being given tangible opportunities to use our talents and fulfill our potential, carving out the life of our choosing. What truly empowers us is having the privilege of choice placed back in our hands, enabling us to transcend mere resilience to a state of anti-fragility where we thrive and grow.
This is our life, our battle to win. Our community is our troops, made up of
people like you and me. Everyday heroes whose courage to try, whose efficacy of action is our greatest gift.
The magnitude of our actions is only as great as our clarity of purpose. It’s stories like ours that change the world. Every revolution begins in the heart and when our hearts and our actions are united, any dream is made possible.