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Thirty years young and navigating a reality that closely resembles a nightmare. Uncovering moments of peace buried within the torture.
Cohabitating with Arthritis
By Kayla Jenkins
Arthritis has seized many aspects of my being, it's tightly clutched every part of my stiff frame and split me open at the seams. During the onset of my disease, I cowardly surrendered and lay down on the raw and chilled road. My near lifeless body vibrating from the cold and from the agony that I felt as I watched this fiend destroy the ‘me’ I had previously fought hard to love and appreciate. My self- confidence, my independence, and my joy (just to name a few) flew out of my ripped open body like a caged bird being let free. The road I trudged to a diagnosis was isolated, desolate, and lonely. The further I staggered toward an explanation and justification for my debilitating symptoms the more secluded I became. Loved ones fell away as they began doubting my experience and the amount of pain that I was feeling.
Initially, I saw several physicians and specialists who were unable to provide an answer or a solution; they were puzzled and some harshly distrusted my word. There was no denying my presentation, though. I was frail, pale, and unable to bear my own weight, or lift my arms beyond shoulder height. At times I found that I was growing sceptical, becoming furious with my ailing body. I wondered if this was just stress, or the result of a bad breakup. Was this something I did, or the product of my past buried trauma? I couldn't understand at the time why I felt the way I did and how the medical field couldn't tell me why.
Now, I recognise how vast chronic illness truly is and how every illness affects every person who lives with it differently. It often takes years to diagnose chronic illnesses, and when you're living with one, or several, you're impatient for the knowledge of what it is that is destroying your mind, body and health. You bring enormous amounts of hope to each appointment, more than you can carry, only at times to be left leaving said appointment with a crushed spirit and very little desire left to fight. I've experienced unbelievable amounts of abdominal discomfort, nausea and fatigue due to my pre-existing inflammatory bowel disease but I wasn't prepared to wake up one morning with the level of pain I now experience and never to have reprieve.
Axial Spondyloarthritis (axSpA) otherwise known as the bane of my existence has weaselled its way into every nook and cranny of my body, created space where there was none and has settled in. Over the course of the last two years this disease has made itself a home within my body; it has forcefully pushed me to the back and taken over. After what felt like surviving a lifetime moving in slow motion, I have a diagnosis. This hasn't changed the opinions of dubious family members, and it hasn't allowed my self-advocacy to be heard any louder. I had hoped that a diagnosis would mean immediate and appropriate treatment, followed by a return to a regular, healthy life but that hasn't been the case as of yet. My physicians and I are often left puzzled after each appointment, scratching our heads over new and unexplainable symptoms or laboratory test results.
I'm drained and stale but I've found solace in sharing my experience and thoughts. I've also learned that this disease does possess the ability to give back to its host. If you're willing to take a deep breath and accept its offerings despite the tormented relationship that you have, arthritis teaches you perspective, a deeper level of compassion, and a mind-body connection that most will never have the pleasure of experiencing.
Living with this disease feels overwhelming and confusing as I balance an enormous amount of gratitude for my body and utter betrayal simultaneously. Although I don't often have control over my own body, I'm learning how to create the space I need for myself within these walls. It's as if I'm cohabitating with a roommate with whom I clash with regularly but I now have my best interests at the forefront and clear intentions. The further I dive into this disease the more my body awareness can expand and the louder my self-advocacy becomes.
Full post reading by Kemi Rodgers