Ankylosing Spondylitis: Navigating Fear and Resilience

I've been on a weighty journey—a journey characterized by declining health and disability. It is undeniably cumbersome. Chronic illness has disrupted the life I once treasured, reshaping it in unexpected ways. It's been an oppressive jaunt as well as revealing at times. And it is unarguably a dispiriting experience. This journey cultivates and maintains the presence of fear and unrest throughout the arduous experience. My spirit, burdened and oppressed, is weighed down by its constant presence of reminders and manifestations of my condition.

Each day brings new challenges and uncertainties

I endure as best I can, moving slowly onward toward wellness, only to be drawn back unprovoked. Each day brings new challenges and uncertainties, testing my resolve and pushing me to my limit. Here, I am broken and bruised. Yet, amidst the confusion and fear of the unknown, I pick my head up. I reach for healing; a healing that is not just about procuring physical recovery, but that of profound inner strength - to continue to forge a path forward, courage - to confront my disabling fears, and resilience - to endure the uncertainties that lie ahead.

I'm tempted to say I'm back in the game, but...it's been quite a struggle. I stand and push forward on this path amidst declining health. It's all but impossible you see and once again I am knocked down. The ups and downs of my health condition are persistent. It is a burden for me and I'm hesitant to get back up. I wish I could claim I'm thriving, but the notion of truly being "well" is a rather ambitious goal, and particularly over-zealous for someone dealing with a chronic illness like inflammatory arthritis.

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The grip spondyloarthritis has on me is quite significant

It has proven to be one of the most challenging of health struggles to get in front of. With its unyielding grip, it has an unnerving presence. Easily, this disease demonstrates its imposing strength and squeezes the light and last breath you have from your body. It impairs, and it exhausts. And you discover all too late there entails a steep learning curve - one involving acceptance, adaptability, and resilience - all the while navigating through unfamiliar terrain of pain, debility, and uncertainty.

My cognitive abilities and physical functioning have been under fire for some time now. What started years ago as a slight weakness, a hint of pain, a touch of melancholy has transformed into quite a destructive affliction. I am increasingly overwhelmed and saddened by this disability. Amid grappling with it, I've found myself dependent more than once on surgical intervention to maintain stability and functionality. And once more, I am heading down this path, gripped by fear.

Feeling fear and dread

One thing I fear is not waking up from surgery, but also feeling like it's "okay" if I didn’t wake - as if I have finally accepted the gravest of consequences. Though tough to admit, saying this out loud, I know that I'm simply drained and exhausted - of course I want to wake up. I wrestle with my thoughts, haunted by the fact that I've been through this before. I instinctively wonder, "How many surgeries will I need?"

I also dread the possibility of not experiencing relief or finding the outcomes of surgery more debilitating. Despite repeatedly acknowledging and consenting to the orthopedic surgeon's warnings of potential adverse consequences, I harbor a mountain of anxiety - fear of being maimed, being paralyzed, or developing more nerve damage. The possibility of deteriorating health after surgery constantly occupies my mind and persists in my thoughts.

Additionally, I am quite apprehensive of being "put under," of the effects of anesthesia during and after surgery. Even though I've undergone numerous surgeries without any issues, lingering thoughts of "what if..." continue to weigh on my mind. This fear also extends to my family and their concern about how they would cope if I did not wake up. It's a weighty burden for them, as much as it is for me, and I acknowledge and respect their fears as much as my own.

To alleviate any impending distress, I focus on what is necessary and essential to improve my health. Surgery becomes a possibility when all other treatments have been exhausted. When physical therapy proves ineffective, injections no longer assuage the pain, and medications no longer provide relief, surgery emerges as the final recourse. Ultimately, the decision to undergo surgery rests solely with me. In the end, the decision made is deeply personal and involves weighing the potential benefits against the associated risks. It requires careful consideration of individual health goals, life preferences, and the advice of healthcare professionals.

Living with chronic illness is undeniably unkind and cruel

Heading into surgery with a sense of worry and anticipation is all too familiar; it's a burdensome choice. I do make it through unscathed but am reminded again of the hardships endured - the scarring, decreased range of motion, nerve damage, an extended healing period, possibly never awakening - long after the healing begins. Despite this, I'm determined to stay optimistic about the favorable outcome of my intentional decision to follow this path toward greater health.

If my portrayal of life with chronic illness isn't clear and seems confusing to you, then I haven't fully captured its complexity. The emotional and mental toll inflicted by chronic disease is profoundly crippling. The weight of it extends past the physical, shaping one's mental landscape with its ongoing challenges. Surviving it is about navigating through the complex labyrinth of emotions, fears, and uncertainties that can profoundly impact one's quality of life and sense of well-being.

I'm interested to know, how have you navigated any challenges posed by your chronic illness? Are you discovering methods to manage the daily obstacles and decisions you encounter? Do you have a support system in place to assist you?

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The AxialSpondyloarthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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