Eloquent

[cassandra]

I'm looking forward to send this article to my nefrologist and D nurses or if poss tell them this. I never was eloquent enough to put it so politely.


https://homedialysis.org/news-and-research/blog/285-home-dialysis-an-antidote-to-learned-helplessness

[MooseMom]

I dunno.  I understand the sentiment behind this article, but I have trouble relating to it.

I understand that having a chronic illness means, by definition, that we patients don't have the control over our bodies that we would like.  We have to rely on pills or dialysis treatments or someone else's transplanted organ, along with having to go to appointments and have labs done, etc.

But I've always felt that I'm the captain of my own ship.  I am the one who tells other people what I need. 

I guess it depends upon how one is wired.  I had my annual post tx labs/appointment a few weeks ago, and I was chatting to my neph about something or another, and I said something about "being the captain of my own ship", and she asked me if I could teach a class on that to her other patients.  She explained that too many of them will wait around for her to call them instead of them being "pro-active" and contacting her instead if there is something they need.  That's a mindset that I can't understand.

If what you fear is losing control, you grab back what you can.

Anyway, thank you for sharing this, cass!  It makes me think of my mom.  When she was on dialysis, I half suspected that she suffered from "learned helplessness".

[UkrainianTracksuit]

I agree with a lot of this for so many different reasons.

At the end of the article it states that nephrologists must learn to trust the “mental faculties of their patients.” This is true.

While I understand that in a clinic setting, at least in my case and generally, there are a lot of elderly people that don’t catch on to HD intricacies and the doctors need to speak to them in a more simplified manner. But there are those, middle aged and younger, who could do well with home dialysis, that have the mind to do it, but constantly get scolded about “compliance” if they raise the question.

These people aren’t the non-compliant type so I know they would be.

I’m not a scientific or medical genius but my nephrologist just made me feel stupid. All the time.

On the other hand, I was extremely lucky that staff at my different centres were really nice. They didn’t lead me to feel helpless at all.

In the beginning, they did, though they had no intentions of it and I was overly emotional. To make chit chat, they asked if I had children, my relationship status, work, home ownership... which is easier for patients with ESRD later in life to answer, but it just made me feel like an awful failure.

I did home HD for a short while but with a professional nurse. She did the hook-up and the clean up. It was nice, as I took more power back, in regard to timing and just being in my home. The main thing for me was the temperature: I could have it set at 32 C and no more freezing! My own preferred chair was a huge deal as the ones in Russian clinics were so narrow!

All of that said, I developed “learned helplessness” not because of dialysis but rather, life in general. I feel like there are parts of this illness that I’ll never control, or overcome, or find a solution, and feel buried. Sad, let down, helpless.

On the other hand, I agree with MM in that patients have to be proactive and hang on to as much control as possible. That makes for more empowered patients and a better outcome. For some that is home dialysis.

It’s tough!

[MooseMom]

And I agree with UT.  I have never thought that the emotional and psychological needs of renal patients were adequately met by healthcare professionals.  Your average renal social worker just is not equipped to deal with the psychic stress that comes with this disease.

[UkrainianTracksuit]

Agreed. A lot of agreeing going on, eh? 

Just my personal perspective is that while services are greatly lacking for dialysis patients' needs in general, "social care" or "taking back control" is vastly missing for younger people. There will be some that tell me to shut up, deal with it and move on, that's life.

In all honesty. nothing feels like losing all control to be in those "best years of your life" when you have the concept of life swept out from right under you. One does feel hopeless and have no control over their lives, all the while friends are off "taking control" of their lives, doing what THEY want and boundless freedom. Meanwhile, a patient such as myself has to watch numbers and plan around 1) starting dialysis 2) dialysis itself.

No social workers had any answers for me, not like they could provide any, but they surely had no support. I was well aware that health-speaking, I was much better off than so many other people out there. I did my best to look after myself and live as best as I could but there was always that part of life where I had no control. And that felt like being in a hole, helpless, that I couldn't get out! But no, my social workers were overqualified and seriously overpaid (at least the salaries they received, gov't funded, not saying that is the case for all of them) form fillers.

One patient my age passed away but she was really bullheaded. She missed sessions, ate some pretty questionable foods and generally had a confrontational attitude. A nurse said that the confrontational attitude was a result of the girl losing all sorts of control in her life that she lashed out. That just made me feel really sad but I understood. I would get angry too... not because I was angry.. but because of this feeling of being "unable". But those were moments, and not a lifestyle choice.

The other thing that bugged be to NO END was the fact a highly respected pediatric nephrologist made the assumption I was not taking my medications. She made such an "educated guess" because my numbers were just as bad as before I started the pills. I said over and over that I took my medication but across the medical profession, there is the mindset: youth = non-compliance. In my case, that was not true at all. I understood that this stuff was serious! So, they sent a homecare nurse to my house to watch me take my pills every morning for 2 wks. Talk about a loss of control. The feeling that now I don't have enough faculties to take simple pills!

And this accusation of non-compliance and youth followed me up until last year! Speaking with my nephrologist, he said, "I think we got you over those rebellious years and your healthcare is better." What rebellious years?! I always did as I was told. I just jammed my jaw shut and said yes, sir! So, in the end, I learned some control... to shut my mouth when needed!

Throughout this whole journey, I feel as though I have had very little emotional support. As a result, I've piled it on the people closest to me, and I think they get tired of it! My parents sure have! But, any life is difficult, right? It's more difficult when you have to grow to be an adult and navigate the world with such an illness. And instead of people making decisions for me, the best thing that happened was being able to make decisions for myself. At least that way, I gained whatever control possible on what I can manage.

There are still big clouds, with transplant, that are still uncontrollable, but you learn to accept and deal. Still, I find myself mourning a life that could have been but especially thankful for the life that I have.

Really sorry for turning this into a rant!  But it's something that really gets on my nerves!

[Simon Dog]

My doc had a patient (not me) who was generally non-compliant, late to or missed sessions, etc.

They switched him to home dialysis and suddenly, now that he was in control, became 100% compliant and never missed a session.

[enginist]

The hospital felt like prison to me.  A beeper was always going off, driving me insane.  And they didn't feed us anything.  I was always hungry.  So I left against the doctor's advice.  I imagine that a center would be worse, for exactly the reasons this essay articulates.