Spirituality, Coping, and Thriving with Home Dialysis

This blog post was made by Jeff Parke on October 18, 2018.
Spirituality, Coping, and Thriving with Home Dialysis

“I am never in control of what happens around me, but i am always in control of what happens within me.” FearlessSoul

I realize that spirituality can be a very touchy topic that arouses countless strong opinions, intellectual arguments, and far too many unspeakable emotional wounds. But, there is nothing more central to my life than my understanding of spirituality. And this is a conversation I think we ought to engage in far more often, especially with those who follow our medical care. Our understanding of spirituality can have a profound influence on our lives. For that reason, one of the most significant journeys I think we can ever embark upon is the exploration of it. Spirituality can be a significant part of our arsenal in dealing with kidney disease and home dialysis. We all have unique gifts of character: compassion, laughter, strength, self-discipline, compassion, empathy, love, etc. Incorporate these traits into your life. Spirituality can be instrumental in the trials we face in life, like kidney disease. You can use this as your motivation to further pursue your understanding of spirituality. Lao-tzu once said, “Simplicity, patience, compassion. These three are your greatest treasures. Simple in actions and thoughts, you return to the source of being. Patient with both friends and enemies, you accord with the way things are. Compassionate toward yourself, you reconcile all beings in the world.” 

When did I find my spirituality you might ask? For years, I suffered from pain, headaches, nausea and a casserole of other issues, but as a young guy, never thought much of it. I always thought it was due to the grocery list of troublesome activities I often found myself partaking in. However, time caught up with me and some of the symptoms got much worse, and so I pushed myself to go to see my local doctor. To my surprise, I was diagnosed with having End Stage Renal Disease (ESRD), and I was just 26 years old.

While this news was devastating, to say the least, I did learn that there comes a time in everyone's life when we are forced to reflect on the meaning of our existence. At times, we feel victimized by the circumstances that present themselves on this journey through life. Somewhere in the drama of living, we are faced with a crisis that turns our lives upside down. Do we seek answers to such troubling questions such as, what went wrong? How could this happen? Why me? I know that chronic illness eats at your dignity and makes you question love, life, and faith. I have learned through my own experience that chronic illness is not something that you beat and fight. It is not a race or a lifelong quest to find normalcy. It is something you try to outsmart.

One crisis for me was the diagnosis of ESRD and the realization that ongoing dialysis treatments would be necessary to maintain life. The day that the doctor tells you that your kidneys are failing is a harsh dose of reality that is hard to swallow. I remember struggling with hearing the words and have talked to many patients who have also struggled. It can be one of the hardest realities to face – and is not something that you want to face alone. We struggle and rage that life is unfair, that this setback was not part of our life plan. The foundation of our lives has been shaken. What was stable, secure, and predictable is gone. Nothing feels right anymore. This can affect you as much as you allow it to. It can be a terrifying realization that your entire world is going to change. But, life is full of change. Change is essential and inevitable. But how do we face these challenges? For me, I found that the ability to accept that there is something that is bigger than myself out there allowed me to not only survive but thrive while having ESRD and needing dialysis – my spirituality.

What is Spirituality?

Spirituality has become a buzzword these days. It relates to transcendent values and relationships and the ways we find meaning, purpose, and hope in life—even amidst suffering. Spirituality is often viewed as the awareness of the universe or a force beyond the material aspects of life that creates a profound sense of unity or a tie to the cosmos.

Spiritual Health and Coping with Kidney Disease:

Spiritual health is a key aspect of health, and can be one of the single greatest resources for coping with stressful life events, such as end-stage renal disease (ESRD), which requires dialysis. Relationships between spirituality and mortality have been investigated in medical populations, and data suggests that there is validity in claiming a marriage between one’s spiritual belief system and quality of life. Chronic kidney disease (CKD) imposes on patients numerous physical and psychosocial stresses that challenge our view of our world, ourselves, and our future. Given the existential nature of our concerns, spiritual factors play a significant role in adaptation to our illness and quality of life. Spiritual beliefs are associated with a perception of less burden of illness, less depressive affect, perception of greater social support, and higher satisfaction with life and with quality of life.

The relationship between spirituality and health care has been receiving increasing attention recently. Importantly, several studies have shown a relationship between spirituality and survival. Patient Care Programs need to address our psychosocial, cultural, and spiritual needs. The World Health Organization even recognizes the vital role spirituality plays in complex and chronic illnesses, such as CKD. Spirituality is inextricably linked with the overall well-being of an individual. It enhances the patient's ability to cope with a disease and accelerates recovery.

After speaking with several patients via social media platforms, such as Facebook, I found that spirituality enhances our ability to handle life stresses. I received feedback such as, “spirituality gives me the ability to stay positive, and focus on the parts of my disease that I can control.” Another stated that “spirituality, gives me a kind of inner peace and helps me focus on the sanctity of life.” Finally, one person stated that it helps him surf the waves of intentionality as he moves through his entire being. I am only a small voice in this world, but I will not be shut up.  Further, I feel that spirituality is not about gratitude for my illness, spirituality is about who I am in the face of it. And who I am is my spirit—which keeps pushing me beyond the limitations of my ability to endure the struggles that ESRD and home dialysis present. And, who I am is my mind and body, which work with my spirit to somehow manage to keep me here on the Earth, alive, present and kicking.” Pretty deep stuff, there I think (wink, wink).

What does this all truly mean? Well, for me, it means that doctors, clinicians, hospitalists, social workers, etc., need to start incorporating discussions about spirituality into each patient’s treatment plan.

References and Photo Credits:

  1. Miller WR, Thoresen CE: Spirituality, religion and health: An emerging research field. Am Psychol 58: 24–35, 2003

  2. Cohen SD, Sharma T, Acquaviva K, Peterson RA, Patel SS, Kimmel PL: Social support and chronic kidney disease: An update. Adv Chronic Kidney Dis 14: 335–344, 2007

  3. Photos by Pexels


  • Lauri

    Jul 18, 2019 9:58 PM

    I have PKD and am nearing the end stage zone. I have been very lucky in this life and am beginning to feel awe at the way challenges have pruned away my dysfunctions and added to my basic happiness, gratitude and spiritual growth. I was a creature composed of fear for most of my life to date (I am 66). I learned of my illness in my 40’s when I still had a young child to raise. Terror ensued! My upbringing with a malignant narcissist mother and supremely passive father had wounded me deeply, in ways I didn’t really understand until after their deaths and my retirement from a 40 year career as a librarian. I am coming into a well of peace and acceptance, joy and transcendence now. How deep is the well? I’ll have to see when end stage arrives! Love your post - very needful and healing in and of itself, thanks for writing. Lauri B.
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