Until my physical ailments began worsening rapidly in my late 40s, I was a high achiever, proud of my “kick ass” attitude, thinking I was so competent I could surmount any challenge life threw at me. Life appeared to be straightforward, and I didn’t understand why this didn’t seem to be the case for so many other less fortunate folks.
Though I worked hard for my accomplishments and sometimes struggled, there was never a question of ability, never a doubt I’d prevail if I made enough effort. Looking back now, I can see the consistent achievements that came so easily and so early in life instilled in me a subtle subconscious arrogance.
Though I knew even back then that I was lucky to be smart and healthy, it was a superficial knowing, not a deep understanding integrated into my world view. I couldn’t conceive of my health ever becoming a limiting factor in life.
My attitude was the typical thoughtless “arrogance of good health,” the attitude of those who can’t even imagine what happens when a body stops functioning properly. This arrogance knows only the kind of pain that heals, the kind of sickness that is cured.
Like most other healthy people, I knew nothing of “intractable” and “incurable” conditions.
I didn’t look down on the sick and disabled; I just didn’t see them at all. Of course, I visually noticed, but I never gave a thought to what it meant to be in their situation. In my ignorant bliss, I assumed their lives were much like mine, just with some physical limitations.
But I was soon to learn otherwise.
By midlife, my lifelong mysterious aches and pains were becoming increasingly bothersome. They worsened and spread dramatically, but one doctor after another assured me “there’s nothing wrong with you”, and the invisible pains remained undiagnosed.
By the time I was 52, I no longer functioned well enough to do my job — or any job.
My escalating pains implied that something was seriously wrong with my body, but I still presumed it could be tracked down and cured. In my arrogance of good health, I never imagined my pain would not be “healed” because I’d never heard about permanent chronic pain.
When I was 56, my fantasies of an eventual cure and recovery came crashing down when I was diagnosed with a genetic connective tissue disorder (Ehler-Danlos Syndrome). A flaw in my collagen, the tissue that holds our body parts together, condemns me to increasing pain and disability for the rest of my life.
The prognosis of lifelong permanent pain shattered my assumptions about my health and its impact. Pain is now a primal and profound force penetrating all aspects of my life.
My loss of a “normal” life stripped me of my unwitting arrogance, humbled me. I can no longer earn a living, cannot be self-sufficient, and all the competencies and knowledge gathered over the course of my career are now useless.
My pride has been crushed, and I feel discarded, unneeded, and unwanted.
I no longer fit into a society that assigns value based on achievements and productivity. Without obvious accomplishments to shore up my worth as a human being, I can foresee that I may never again be considered successful in our society.
But being forced to surrender my previous life has led me to solidarity with other unlucky and downtrodden members of society — the invisible ones, those suffering from constant, unrelenting, chronic pain. And they are good people, this new tribe of mine, hurting but honest, stripped of pretense, and exiled from socially validated success.
This tribe of pained people has shown me it is possible to create a new life from the wreckage of the old, to rise above the now trivial concerns of the past, and to broaden my experience in new directions.
From them, I am learning how to leave behind the old days and ways, first with bitterness, then with grudging acknowledgment, and eventually, I hope, with humility and acceptance.
Angelika Byczkowski is a patient with Ehlers-Danlos syndrome who blogs at EDS Info.
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