Human beings are social animals. We live in “tribes,” as the latest terminology labels our habitual social connections.
We all know the power of the call to conform to our tribes’ social norms. Especially in younger years. Many of us feel compelled to see the latest film, whether it matches your preferences, because we don’t want to feel left out when the particular movie is discussed by our friends.
Feeling left out is one of the worst feelings that can be felt. Remember the high school shootings?
And it doesn’t matter what age we are when we feel left out. It’s a terrible experience.
So when a PKD patient experiences symptoms either directly from the disease, or as side-effects from treatments, and must limit his/her engagement with his/her tribe, the feeling of being left out often begins to be experienced.
Initially, members of your tribe will inquire about your health status, and show concern. But, all too often, that “tribal concerns” fades away.
At best you may feel “marginalized.” You make such an effort to experience the sense of belonging, and, although you may achieve it for a brief time, the feeling often fades, and you feel isolated again.
You may “push” yourself onto your tribe, kind of “shaming” them to keep you part of them, but that often leads to resentments and you may end getting exactly the opposite of what you were trying so hard to achieve.
Consider PKD patients as a “tribe.”
Since every case of PKD is unique, it would very difficult for the “PKD Tribe” to “establish” social norms.
We each have our stories, our Odysseys, our triumphs and our setbacks. And members of our tribe would understand!
Case in point:
At my local PKD Foundation chapter, one gentleman got up to go to the Men’s Room. He got a big cheer! And he appreciated it!
I don’t think that would happen in his usual “tribe!”
Perhaps it’s time to seek methods of developing a “PKD Tribe” that goes beyond local PKD Foundation chapters, which, quite frankly, are not really structured as a “Social Tribe,” or on-line forums and message boards,which, though very useful, don’t provide (in my opinion), the level of connection that many people are seeking.
Right now, I don’t know what technology is available to create a more “real-time” community experience.
I don’t particularly like “Chat Rooms.”
Any thoughts?
No PKD patient should feel disconnected, or feel “left out.”
There’s enough “life energy” in the “PKD Tribe” to accept every PKD patient!
What do you think?
Please comment below on the blogsite or write to me at:
I’d love to expand our tribe!
Peace and Blessings!
Coach Richie Perl
Certified Professional Coach
Certified Trainer of Neuro-Linguistic Programming
Thanks, Richie!
A great article that helps with what I’ve been experiencing lately.
Hey Richie,
YOU HIT IT ON THE NAIL ALL THE WAY THROUGH THIS ARTICLE!!! This is very much what I hope changes. That there is better network of support Kind of like AA, or something along those lines. Not necessary a 12 step thing, but, a support system that is accepted nationwide. One that is kept a float by those who WANT AND NEED the understanding and acceptance.
I do not mean a place to necessarily just dump, of course that would be I believe both necessary and helpful. However, the focus would be on finding an answer or a means to self motivate, and group motivation. Start a PKD or Kidney support network that meets for meetings anywhere and everywhere. Get the word out, and bring attention to our needs and desire to BE A PART OF!
GREAT ARTICLE!! I am sure MANY IF NOT ALL renal and PKD patients can relate to these feeling and emotions. I know I DO!
Yes, Christine!
That’s what I’m talking about!
It’s not a simple concept to bring to reality, because each of us have different “stories” that they “tell.”
It takes an “ambience” of safety and trust which, these days, may not be easy to establish.
But it’s not impossible!
If nothing else, there needs to be “political will” for something like this to manifest.
As I often say,
“Keep the Conversation going!”
Peace and Blessings!
Coach Richie