Not a Warrior: The Value of Embracing Chronic Kidney Disease

This blog post was made by Henning Sondergaard on June 27th, 2019.
Not a Warrior: The Value of Embracing Chronic Kidney Disease

Every day when I open up my computer to see what's going on with people around the world living with chronic kidney disease (CKD) I see people calling themselves “warriors.” They may say “kidney warriors” or “dialysis warriors,” implying they are fighting their disease. I know why they like to call themselves warriors. I totally understand the mindset and the temptation to do so. But, I don't buy the premise of us being warriors. In fact, I feel sadness when I see it. So please let me tell you why this is so.

CKD is a chronic condition. There is no cure for CKD, only relief in the form of medication combined with either dialysis or transplantation. Once we have CKD, we have it for life. By its very nature, a chronic condition is there for the rest of my life. That is why it's called "chronic." So by calling myself a warrior I would feel like I go into a battle I am ultimately going to lose. The disease is going to get me in the end.

I know I have to live with my kidney disease for the rest of my life. I have lived with a disability since I was born, and have used a wheelchair since I was 10. My disability has given me an advantage compared to many others living with CKD. I know deep down that I when it comes to my health things are not going to miraculously going to be more normal, for better or for worse. Therefore, there is no need for me to fight it. If I start fighting my disease, I am going to lose. Regardless of what I do.

I have yet to see someone whose kidney chronic disease reversed. Someone who in earnest can say, "I was a kidney warrior and I won!" If I ever meet one (and if any of you out there is him or her, please tell me) I will jump up and down in my seat in jubilance.

I am a peace loving individual. Therefore, I will much rather embrace my disease, just like I learned to embrace my disability early in my life. I want to learn how to live with it as peacefully and harmoniously as possible.

It is an eternal learning process. I want to show others how they can do so as well. I often help others in my situation as a counselor, sometimes also as a friend, an advocate, and a shining light in a world that—admittedly—is pretty dark at times.

My CKD is an aspect of my body—not an aspect that I particularly like—but it's there. It also has an effect on my mind. I have written about that previously here. I just see no point in fighting something that ultimately is part and parcel of my physical existence.

This is not because I walk around in a daze of eternal bliss and unfounded optimism. I get frustrated and angry too. I yell at my body when it lets me down. So, I do fight aspects of my disease. But only verbally. After a good yelling I usually feel much better.

I have dubbed my diseased body Harry. I chose that name because it has a tendency to drag me into hairy situations where I feel like it has control over me when I should have control over it.

And trust me. I have had many episodes where Harry has taken control and led me up a certain creek without a paddle in the past couple of years. I have had recurring infections with more than 20 hospitalizations in 36 months. More than a handful of times I was fairly certain Harry was going to give up on me and I would have to enter the dimension none of us have any idea what is. Yes, I smelled the Grim Reaper in my solitary hospital room on numerous occasions. And had I called myself a warrior, I would have stared defeat straight in the face.

But, I didn't fight, so there could be no defeat. I asked Harry if he really intended to desert me in this, our hour of discontent. Sometimes calm, cool and collected. Other times, I probably raised my voice. No matter what, Harry is the quiet type. And he stayed with me through it all. He was my body and my buddy all rolled into one.

And for that I am grateful.

I am grateful because I am still here to share my story of living with my disease. Of living with Harry. Of living a life to its fullest — not despite but because of my kidney disease and my disability. Because, I learned many years ago when one door closes I turn my back to it in search of the next door. And that is why I will continue to be a kidney advocate, working for better conditions until the day that Harry decides now is the time for us to part ways. As buddies, of course.

Comments

  • Michelle

    Aug 22, 2019 9:34 PM

    Well said Henning xx

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  • Lee

    Jul 26, 2019 6:26 AM

    I disagree. I fight to stay alive. I refuse to give in to this disease. So for that I am a warrior. I have the power to do better to be better.

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    • Henning

      Jul 26, 2019 10:07 AM

      Lee, thanks for your reply.

      I wonder if you read the blog or just the headline. I refuse to give in to my disease, therefore I don’t fight it. It is not going to get the better of me. I want to have a good life so I have no time to fight the inevitable. CKD is part of my life whether I want it or not so I teach myself to live with it by doing what is needed for me to feel as well as possible - that is what I call “making peace with it.”

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  • Steven Turner

    Jul 15, 2019 5:38 PM

    Having spent many years doing martial arts whilst suffering from CKD & hearing the term warrior quite a lot, I would point out that a real warrior spends as much time learning to protect one's own body from attack as it spends learning to strike anything back. Actually the ability to defend your body from attack is the most important part of a warriors mentality. After reading quite a few of your articles Henning I see you as a formidable warrior in defence of what your body needs regards correct treatment, for instance... longer dialysis sessions.

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  • Diane Skiffington

    Jul 15, 2019 5:24 PM

    When I first started to read the comments on this site, I was taken back by the folks calling themselves warriors! It was not a term that I could relate to. I have had Chrons's for 47 years so I am no stranger to chronic conditions. However, I have always striven to rise above and not identify myself by my disease. We are all so much more than that: wives, mothers, career enthusiasts--the list could go on. Labels are limiting; fence us in, allow others to think they can define us. I would much rather you be amazed when/if you discover that I go to bed each night with a tube in my tummy!

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  • Leong Seng Chen

    Jun 28, 2019 4:18 PM

    Birth ageing sicknesses & death is part & parcel of our humankind's journey that no one can escape in face. It is just a process or procedures that we mankind have to face it accept it & manage it in its reality as per our mankind growth & development on earth. This is LIFE-JOURNEY!

    "I am a peace loving individual. Therefore, I will much rather embrace my disease, just like I learned to embrace my disability early in my life. I want to learn how to live with it as peacefully and harmoniously as possible." ~ I like this statement! Thanks for kind & timing sharing & prompt contribution!

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  • Miriam Lippel Blum

    Jun 28, 2019 1:16 PM

    Bravo, Henning. Well said. I agree with you.

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  • Caroline

    Jun 28, 2019 12:26 PM

    Totally agree! I have never called myself a warrior and it drives me crazy when people refer to me as that. I’m just a normal human dealing with a disease in the best possible way I know how.

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  • Ant

    Jun 27, 2019 8:57 PM

    Ah semantics! Sure you are a warrior Henning! Not sure about others but no, the warrior in me is not fighting the disease but the threat of despondency and brain fog dialysis brings about. A warrior despite feeling unwell braves the torrent, the jungle, the icy mountain in the quest to make progress, to live, to survive! I salute the ‘warriors’ who run full-time jobs; who participate in family life and chores; who tackle a range of hobbies and sports; who step above self-pity and make positive contributions wherever possible.

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    • Henning

      Jun 28, 2019 4:18 AM

      Ant, that is a great perspective. But I feel that fight is part of everyday life. Most people I know have challenges they are trying to overcome to live their lives - granted, sometimes our tasks seem insurmountable. But being a counselor I have seen many people who are struggling with all sorts of issues, whether they are well or sick, pensioners or doctors. People nobody would call warriors, though by your definition I would have to call them that.
      Like I said initially, I see your point and I appreciate your input.
      Lastly I want to tell you that it is people like you who make me continue. I know many people are inspired by me. I think we often forget how we inspire each other.
      And this one goes out to you.

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  • John Agar

    Jun 27, 2019 5:16 PM

    Beautifully said, Henning ...

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  • Cathie

    Jun 27, 2019 3:07 PM

    I agree, we who have CKD are NOT Warriors, just individuals, like everyone else, that have been given this terrible disease. We take each day as a gift. We try to live each day in a Positive Loving Manner. We Thank God for our Blessings.
    Thank you for your article.!!!

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    • Cathy

      Jun 30, 2019 1:27 PM

      I like the term living with the disease.
      Having 20 years of DM and Sarcoidosis, and being a dialysis nurse, I’m always living pre-pre CKDone day at a time.
      Im not comfortable with the term Cancer Survivor either.
      I like to just enjoy each day I’m feeling good.

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