Hello!
I decided to resume blogging after about a 10 month hiatus!
The question in the title, “What would you say?” is the question I am asking to those many PKD patients who indicated in the various message boards that they have no one to talk to about their disease.
Let’s say you are diagnosed with PKD and your “circle of people,” family, friends, relatives, don’t seem to be inclined to take the time to sit down with you and listen to you talk about what you’re experiencing on your “PKD Odyssey.”
I would guess that a) you would feel hurt that your “people” don’t care enough about you to even be curious as to what having PKD is like for you, and b) you would feel frustrated that you don’t have the opportunity to express your feelings about having PKD.
Obviously, this is not a healthy state of affairs.
We all know what it’s like to “vent.” It feels good! We “need” to vent! Too much of life “sucks,” and the internal pressure of frustration needs to be released!
OK. So if you don’t have a trusted “ear” to listen to you, let’s pretend you do.
What would you say to a trusted friend about how you’re experiencing PKD?
Would you express your sense of being “defective?”
Would you complain about pain and fatigue?
What about the feeling that you might not have the future you were hoping for?
Perhaps you’d be worried about your relationships, or lack thereof.
And you would include complaining about the health care system!
In other words, you would have a whole lotta “stuff” to express!
And then…
How would you want your pretend friend to respond?
I’m sure you wouldn’t want to hear, “You think you got problems? Let me tell you about my [boss, spouse, child, back, sinus, in-law, etc.]”
No.
You want empathy. You want to feel understood, listened to, that you have received the concern that you feel you require from your friend.
It doesn’t sound like that’s too much to ask from a friend or family member.
But clearly, too many PKD patients aren’t getting it.
Perhaps you can get that empathy and understanding here.
I’ve been there.
Please let me know what you would like to express about your experiences on your PKD Odyssey that you haven’t been able to express to others.
info@innergameofpkd.com is my e-mail. It’s “password-protected.” No one else can read it except me.
Hey, it may feel good!
Peace and Blessings!
Coach Richie Perl
Certified Professional Coach
Certified Trainer of Neuro-Linguistic Programming
Hello, I am a student at Manor New Tech High School, and I was wondering if my group and could ask some questions like how does the disease affect the day to day life of a person with PKD, how do people tend to cope with it, and how many people have had transplants over PKD. My group and I would really like to learn more about PKD for our project.
We appreciate any response
Hi, John!
Interesting project!
Your proposed questions are excellent!
Personally, I can’t answer for the thousands of PKD patients.
Every case is unique, because every patient is unique.
What I do is assist individual patients along what I call the “PKD Odyssey.”
I don’t know why you have chosen PKD for a project, or what your intended purpose is, but for information
about how real patients actually experience their disease, I suggest the following:
1. Develop a questionnaire which initially describes the nature and purpose of your project, and how the information asked for will be used.
2. Assure that the answers to the questions will be confidential.
3. Design the questions in such a way that they will be “gentle.” In other words, keep in mind that living with a disease is not easy,
and many people may be sensitive to questions that may appear to be too “prying.”
4. Consider looking at “Survey Monkey” to put your questionnaire on the Web.
5. Go to Facebook, where there are several Facebook groups dedicated to PKD.
6. Contact the “Manager” of the group and introduce yourself and your intentions.
7. Perhaps the Manager will allow you to post your “Survey Monkey” questionnaire.
8. Politely ask the members of the Facebook to respond!
9. Perhaps you could “reward” the participants of the survey by sending them a report of the results!
Here is one Facebook in which I participate: https://www.facebook.com/groups/PKDCYSTERHOOD/
I believe the Manager of the group is Margee Kjelson, who can be found on Facebook!
I hope this helps!
Good luck!
Peace and Blessings!
Coach Richie Perl
P.S. If I can be of further assistance, please let me know!