Ankylosing Spondylitis: Navigating Fear and Resilience

By Rebecca C

4 min read

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.

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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James Hollens Moderator & Contributor
Hey <inline-mention username="Rebecca C" user-id="2106882"/> , Sorry to hear that you have been through so much with your chronic illness journey, I think so many of us can relate to these feelings that you have described so accurately! But I am so glad to hear that you still have the strength and positive mindset to keep going and pushing on - this is definitely the key! One of the things that I usually do to cope is make a to do list of small things that I can do to improve my circumstances and slowly tick through it whenever I have the energy. It keeps my mind busy and helps me stay positive as I know I am making progress albeit quite slow at times! Wishing you the best of luck with your surgery, I hope it all goes well and you make a speedy recovery and see some improvements soon! Sending love and positive vibes, James (Community Member)
1. Rebecca C Moderator & Contributor
 Hi <inline-mention username="James Hollens" user-id="2107776"/> - thanks for your kind and meaningful words. Knowing others understand this chronic illness is in itself soothing and hopeful. We stick together encouraging each other through the day, as good or bad as it is. Your idea of making a list is a refreshing knack I need to put in motion. I tend to look at my situation as if clumped into a huge ball of pain (and misery). Breaking it down, looking at it as small affairs, surely can ease this burden and guide me forward. I've begun to heal, albeit slowly, and find my energy is taking a long time to recover; very tired, and sleeping a lot. I hope my low energy is due to the healing process and not a new normal for me. My positivity is waning most days. But I do get up and get going trying to accomplish something, as little as it may be. I know you understand. And I am glad I have support here to keep me moving forward. Wishing you the best - Rebecca (team member)
LisaMichelle1092 Member
<inline-mention username="Rebecca C" user-id="2106882"/> you've got this. It's always going to be up and down with this disease but you're doing all the right things. I try to remember that the darker, harder times always seem to give way to the better days. And I'm doing better. My rheumatologist took me off of the Humira because after 3 months, it seemed like I was getting worse. I'm now using Embrel and after less than 3 days I'm already noticing a difference. The awful fatigue is better. Fingers crossed this is the right drug for me so that I can get back to living and enjoying my life. Be well, spondy sister.
1. Rebecca C Moderator & Contributor
 <inline-mention username="LisaMichelle1092" user-id="6222695"/> So glad to hear you are doing better on Enbrel. I had a few nights this past week when I felt horrible by the time I hit my pillow. Tossed and turned for a while both nights, but I finally nodded off. This pain is horrendous. I hope my body is not getting used to my JAK (Xeljanz) and helping less and less. Frustrating. Have a wonderful week. Thoughtfully, Rebecca (team member)
LisaMichelle1092 Member
<inline-mention username="Rebecca C" user-id="2106882"/> I wonder how many of us have felt these very same things though not been able to express them as poignantly as you have. I know I have had these thoughts. Especially now because I'm in my 50s and know surgery is in my future. I look back at my lumbar fusion that I had 20 years ago and marvel at the fact that I could survive such a major surgery and then heal and rehabilitate for months afterwards. But of course, I was 35 then. And we had no idea I had a disease then. And we didn't know I would heal for a moment but not for my lifetime. I too have been in a difficult place lately. I've only just realized that my goal of being stabilized for more than a few months at a time, well, this idea...this hope is probably unrealistic. I may have to settle for periods of feast followed by famine. Which is a cruelty like none other. Unless I choose to see the famine, the unwell periods, as temporary and revel in the better health seasons. How do I navigate this? How do we navigate this state of being? I don't know. But I know that having the ability to communicate here with those who understand is a gift. We aren't ever alone. I am remembering a time when there was no internet. No dial up. No way to connect with others. I can't fathom having this disease without a community of spondies to share the highs and lows with. THAT terrifies me more than the disease. My words may not give you new inspiration but I hope it helps to know that you aren't alone in your journey. I'm hobbling and limping along with you.
1. Rebecca C Moderator & Contributor
 <inline-mention username="LisaMichelle1092" user-id="6222695"/> Thank you, Lisa, for your very kind words. It's been tough. You very well understand the fear and unpredictability of spondyloarthritis. I, too, am in my 50s and had surgery back when 35 yo or so. I feel I weathered it so much better back then. I had no diagnosis and believed I would get better and not have to deal with spinal issues again. I didn't believe it would end my pain, but thought betterment would be in my future. I had absolutely no clue as to what my future held for me. My health definitely took a deep dive, then the diagnosis, now ... managing inflammatory arthritis, a devil of a disease riding side by side with me, steering my movements and navigating my actions. Sometimes I am up and moving reasonably well, sometimes crawling through my days. I know surgery will once again (or maybe twice) be in my future. I don't want to think about another hip replacement, ankle surgery, or spinal fusion. I want to feel okay about waking up and going "normally" throughout the day, without pain and exhaustion. I am determined to continue strengthening my mental and physical health, aiming toward a continuance of increased well-being. Good or bad, I will face the obstacle. I absolutely agree; I would never have been able to handle this disease very well should I not have the support and understanding forged by webpages and online sites offering up such supportive individuals and resources such as Axialspondyloarthritis.net.Thanks for taking the time to read my article. I hope you are doing well and managing as best you can. Warmly, Rebecca (team member)