About Kidney Disease, Defiance, Compliance, and Humor
By Fabio’s Mom. Reprinted with permission from https://fabioneedsakidney.com/f/about-kidney-disease-defiance-compliance-and-humor. Originally posted on March 3, 2023.
Having now had kidney disease, and multiple different complications and learning from it, I have found that there are things that only “patients” learn about doctors, and the medical system.
One is: They are out there to help, and almost always (though not 100% of the time) are trying hard to help and doing their best. Almost always (though not 100% of the time) their interventions are well researched and their knowledge is extensive.
But not always.
Transplanted kidneys, for example, are placed not in the waist/back area at the sides of the body, where our normal kidneys live, but are placed surgically right beside the bladder, where they work more effectively. As it turns out, I have learned, you can go into a hospital, get a doctor who actually reads your full history, finds out you have no native kidneys of your own, and that you have one transplanted kidney in your groin area, and who will still tap at your back, where there are no kidneys, ask you if you have pain, and tell you that if you don’t, the issue must not be kidney related. Honest to God. Some doctors have the courage to look a little humble and say, “Oh, right,” and check the correct spot to palpate Fabio the Transplanted Kidney, and admit they made a mistake. But the number of doctors I have had who literally just straightened up and pretended they knew that all along, and “explained” to me that they were just checking that area (where there are no kidneys) because they needed to check there for kidney problems.
(Just a hint: IF there are no kidneys there... no one needs to check there for kidney problems.)
So, as it turns out, in my experience, it is worth using all of my curiosity and concern to research my disease, ask questions and not just take every answer on face value. Get second opinions, check out what other doctors and kidney (or whatever disease you have) support groups and patients say, and then make informed decisions.
Patience and a good sense of humor go a long way in coping with a chronic disease, and I find the ability to both feel the sadness, grief, anger or fear about what is going on with my body, balanced with humor about the absurdity of some situations, to be my best formula for walking day to day with health challenges.
In my life, being willing to ask questions of doctors, and being willing to have a sense of humor about my situation has made all of the difference. And thankfully, in the few times that I was truly in the presence of medical professionals, who, for whatever reason, were literally on the verge of doing harm with their misguided decisions, knowing a lot about my disease, being polite but willing to ask questions, and letting my doctors know that I want to be empowered to partner with them in my care has made all of the difference.
Being in the “patient” role can be really disempowering. Don’t let it cause you to give up your voice or your choice!