I’ve been noticing that a number of PKD patients have been indicating to me that they are not able to communicate their feelings, concerns and even needs to family and friends.
Even though I have recommended journaling to express your thoughts and feelings, clearly we all need human interaction to keep us in the flow of life.
In this discussion, I will not attempt to “solve” the problem of not being able to communicate with family and friends, but perhaps we can take a closer look.
Our diseased kidneys are part of our physical bodies. The effect of these diseased kidneys are physical, emotional, and social. It’s quite unfortunate when people in our circle don’t want to acknowledge this about us. It is a form of rejection. (And I don’t mean organ rejection! 
)
So, if you feel somewhat rejected, I’ll assume that this is something that you DON’T want.
You want to be accepted as fully as possible for who you are (cysts and all) by your family and social circle.
Let’s turn the tables. Who does a person have to be in order for you to be accept him/her?
You want a person to be friendly, reasonably open, a person who allows a give-and-take, someone who offers some praise for your “good deeds” and accomplishments, someone with whom you feel you have, or can develop a level of mutual trust, and someone who won’t abuse that trust.
The obvious question is: Are you such a person to the people in your circle?
Or, (and not accusing anybody, since I don’t know who reads this) are you abusing your PKD situation playing the part of a helpless victim seeking sympathy, or even pity?
If you were to play this part, it would be clear why people in your circle would push you away. They all have their own problems. Oh sure. Someone may help you with a chore, or give you a ride occasionally, and that’s great. But you’re looking for connection, understanding, and nurturing.
What would it take to be the kind of friend to your circle that you would want for yourself?
You know the answer! Be a friend to the people in your circle! Show concern for their issues. As difficult as it may be for you, be as “regular” a person as you can be, within your capability.
The responsibility is yours for your circle, as it is mine for my circle, PKD or not!
Hint: I’m sure that some of your experiences on your PKD Odyssey may be of some help to someone in your circle. Offer that experience humbly! You have a lot to offer your friends and family!
I hope my offerings are accepted!
Peace and Blessings!
Coach Richie Perl
Certified Professional Coach
Certified Trainer of Neuro-Linguistic Programming
Hi Coach
It’s hard to sit back tho and listen to someone complain about a sore toe or sore back from doing what they want to do.when you know they are going to get better in a few days and the only way we get “better” is a transplant. You want to say I’ll trade youbut you know they don’t understand.When I talk to other pkd’ers I try not to gloom and doom about how bad I feel,I try to give them the answers they are looking for and not candy coat it but be as honest as possable,like when they took my kidneys out is was no walk in the park but not having to eat pain killers all day it was worth it but then the downside side is having to do exchanges 4 times a day or 3 days a week on hemo.I could go on forever but I’ll stop here.
God Bless
Steve Jackson
Hi, Steve!
I understand! In my vision of having PKD “buddies,” the big challenge is for the “buddies” to avoid “one-upmanship.”
Our egos have a habit of wanting to make us feel superior even in suffering!
There is always someone better off than me, and there is always someone worse off than me. As long as we hold that perspective, we can attempt to accept our present situation, without being resigned to it.
Peace and Blessings!
Coach Richle Perl
One of my attitudes has long been that this is my reality, and that is yours. I’ve had people try to guilt me into being less depressed by telling me about abject poverty in India or Africa, or about kids just a few miles away who haven’t owned anything new in their entire lives. And that sucks. But that’s their reality, and this is mine.
I don’t go with the one-upmanship, unless the person I’m talking to starts it. Then, unless they’re dying tomorrow, I usually win. Empty victory, that’s why I don’t pursue it. And if I feel myself having no sympathy for someone, then I examine my feelings about that person. Usually turns out that I couldn’t care less if that person was doing well or not.
For the people I love, the people who do listen to me, the people I try not to burden, I do care what they say and how they feel, and what they’re going through. And no, they generally can’t compete, but it’s never a competition. Well, no, that’s not completely true, but we usually get over it pretty quickly.
In my friends, one of the things I look for is an understanding that their reality is not my reality, and neither is less than the other for the difference.
That, and I have no trouble tuning people out if I just couldn’t care less if their son got a D in gym.
Hi, Lisa!
Your attitude is COMPLETELY realistic!
It’s easy for someone to compare one person’s situation to some abstract, dis-personal situation.
It’s like the person who says he cares about someone with PKD by casually writing a check to the PKD Foundation. The money is nice, but the human connection is absent.
You have the freedom to choose how you deal with people, and whom you deal with.
I don’t know about you, but I don’t seek agreement. Everyone is different. However, I do like to be understood.
When I feel that I am “dismissed” by someone, that’s pretty much the end of that relationship!
Keep On Truckin’ !
Coach Richie Perl