Does Anyone Else Feel Like Giving Up on Dialysis?

This blog post was made by Ant de Villiers on April 2, 2020.
Does Anyone Else Feel Like Giving Up on Dialysis?


Along with daily discussion of technical, medical and logistic issues, the Home Dialysis Central Facebook Discussion Group occasionally posts on the feelings/emotional impact of dialysis. This area is surely worthy of attention as it affects not only our lives but the wellbeing of those connected to us.

A recent query by a member, "Does anyone else feel like giving up on dialysis sometimes?" elicited 71 responses. Widely expressed was commonality of feeling PLUS application of positivity to cope, to accept, and sometimes to thrive!

Poppy, Thriving Mohnfeld, Nature, Close Up

There is no disputing that dialysis is demanding and at times highly oppressive. Some 25% of respondents simply concurred with a "yes" or provided a negative sentiment.

On the other hand, 15% were stoic. Here's a sample of their comments:

  • "Yep, especially lately. Going on 9 years and I get so tired of it all, but I gotta keep pressing on."
  • "Every damn day but you have to push through."
  • "My hubby does sometimes but I talk him out of it. I can't imagine being him, so hard sometimes."
  • "Yes. Every single treatment...Stay strong warrior ❤"
  • "It's an adjustment and an obligation that we are required to do. As humans we don't like to voluntarily give up our freedom. We're forced into this relationship with this machine and feel no joy or satisfaction from it at all."
Traffic Sign, Road Sign, Shield, Street Sign, Directory

Then there were the "silver-liners" - some 60% of respondents:

  • "I have fun when I'm on dialysis, I do it at home, it's a rest time, I can sit and play games with my friends, talk on the phone, and have social time, with people, where I never used to have. Good comes from all this! Think of the people you will meet and change."
  • "I have been on dialysis for a total of 28 years. I'm having more issues along with it now, so it's more difficult now. But keep looking to see all you would have missed if you had stopped. I've decided there is WAY too much to look forward to!"
  • "I'm sure we all have fought about it from time to time. Consider family when that thought comes into your head. Dialysis is our lifeline and should be thought of as that."
  • "Yes, sometimes I think to heck with it and then I look at my grandbabies and think it's all worth it. I do it for them."
  • "It is the courage and strength of people on dialysis that keeps encouraging and inspiring the rest of us. Sometimes you say 'gotta give it one more day,' or 'gotta give it one more minute,' but know the rest of us are wanting only the best for you. All on dialysis are warriors. You have my respect."
  • "But the other key to a positive perspective is to look at how lucky, yes lucky, we are. I have friends and family members with a variety of horrible cancers, autoimmune disorders, strokes and more. I'll take dialysis ANY day!!"
  • "Yes, but remember the glass isn't just half empty or half full...it is refillable. I try to think of dialysis as refilling my joy and health so I can enjoy friends and family."
  • "It's the life-saving process that you love to hate."
Sunflowers, Field, Woman, Yellow, Summer, Blossoms

We recognize too that life's challenges impact us differently. Our emotional strengths are as varied as our physical ones. Someone just coping emotionally with the impact of dialysis may be eliciting more courage from their depths than the happy extrovert who takes dialysis in his/her stride. Dialysis is a great equalizer across the spectrum of temperaments.

"Giving away what we do not have, we create what we need," goes an old adage. Another runs "Energy follows thought." There are countless examples of folk who generate the strength to reach out to others from the depths of their own extremity or illnesses of the most varied kind. So doing, they become empowered in ways they'd not have believed possible. Many go as far as to say "my disease has made me a better person."

The deeper we touch into our own despondency, the more we stir the potential of unlocking empathy towards others. There is no question the flow of compassion is a healing energy, though not necessarily of the physical manifestation of the disease.

Whether from the religious, humanitarian or philosophical angle, most would agree the gaining of deeper understanding of ourselves, one another, and the widespread condition of global suffering may at last provide the defining incentives towards creating a better and caring humanity-one whose mode of living becomes transformed and worthy of our beautiful planet.

We on dialysis have our part to play.

Sunrise, Space, Outer Space, Globe, World, Earth, Flare

Comments

  • Diana Beaumont

    Apr 13, 2020 10:39 PM

    My husband is on home hemodialysis, having lost both kidneys to cancer. I'm his caregiver, take care of all the equipment and place his needles. He uses the four hours every other day to read, work on his laptop, call people, visit, nap. He's been a very good sport, and I thank him often for agreeing to dialysis so I can have him with me. In return, he thanks me for keeping him alive. I say we're a good team, and we continue onwards as if we are still working rather than retired. And during this coronavirus, we are so thankful that we can dialyze at home instead of in-clinic.
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  • Manny

    Apr 07, 2020 9:03 PM

    worth reading it!
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  • Amanda Wilson

    Apr 04, 2020 11:40 PM

    I don’t think we should discount other peoples’ feelings, be they negative or positive. We are all individuals, and for me the feelings changed over time in the 16 years of dialysis following 1st transplant failure, from positive to increasingly negative, to the point of considering hospice increasingly frequently. I was burnt from time on dialysis, and from chronic and subsequent psychological pain. I was about to become an empty-nester as son was about to leave home. The point I am trying to make is that how you view dialysis can be due to the impact of other factors (personal circumstances, physical pain, psychological pain).

    I urge people to never tell people to ‘look on the bright side’, ‘be positive’, ‘pull themselves together etc. to someone who expresses that they feel this way. This is probably the most isolating thing you can say to someone, who is in a dark place, and clinically depressed.
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    • Dori Schatell

      Apr 07, 2020 9:23 PM

      Great point, Amanda. Is there something someone could have said or done that would have been helpful to you when you felt this way?
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  • Leong Seng Chen

    Apr 04, 2020 9:10 PM

    Since young age I had donated my blood & then when I was at 50, out of a blue I donated successfully my bone marrow through my hips bone to save a boy along my life-journey too upon signing with the registration authorities both in Malaysia & Singapore with my organs donation upon my dead body.

    At 67, unfortunately, I got both kidneys failure with ESKD. Since then I had been luckily going through successfully with my hemodialysis (HD) treatment or therapy for my lifestyle moving on. I am mindful & ready to face it accept it & manage it well enough together with my social welfare within the community.

    I feel my physical body is like a car that need constantly for proper maintenance in order to keep moving on. It is simply the positive mental strength of "approach & attitude" is essential & matter the most in my personal genuine life-journey nowadays. Smile & CHEERS~~~
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  • JoAnn Soyka

    Apr 02, 2020 6:42 PM

    I am my husband’s dialyzer and we accept it as a fact of his life, but it is in my living will that I would rather die.
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