As a kid, I once read the following that was in a list of kids’ jokes:

She: I’ve got the world’s worst toothache!

He:  How do you know that?

She: Because it’s MY toothache!

No one can actually totally feel another’s experience. As much as friends and family empathize and sympathize, we each live our own lives individually. As trite and obvious as that is, it becomes important in the area of communication.

There are clearly times in our “PKD Odyssey” when we feel. like we did as adolescents, that “nobody understands me.”

In the case of living with a disease, this may be literally true for many people who don’t have what is commonly known as a “support network.”

In addition to actually having Polycystic Kidney Disease, the patient has the added stress of feeling isolated. Even in the midst of a group of friends.

Today, with message boards, forums and some Social Media sites, the sense of isolation has decreased a bit. Patients have an opportunity to “vent,” ask questions, and share experiences. This is very helpful. I participate in some these myself. It gives patients a clear sense that we aren’t alone.

Yet, all too often, I detect in some of the postings a longing for true connection. Too often I read how a patient’s family is unwilling or unable to acknowledge and/or assist in the patient’s plight.  It’s so sad.

And often, when such a person seeks “support” from an on-line group, the acknowledgment and acceptance is, by the nature of the impersonal nature of such groups, at a much lower level than is required, leaving the individual frustrated, like having a great entree on a tiny plate.

In-person “support groups” are of course, much better, as long as they are well-moderated and deteriorate into “whining” sessions.

Here in New York City, I was told that such a support group existed for a while and then dissolved. People didn’t want to keep talking about PKD all the time.

What does it take to feel a part of the “mainstream” as much as one can, instead of feeling apart from the flow of “regular life?”

First, know that even with diseased kidneys and with a somewhat modified lifestyle, you are still a valuable human being. You may have to learn to be your own advocate. This means NEVER putting yourself down. It also means to seek support from those you can provide it for you. You NEED a “friend” who accepts you warts, cysts, and all!

You are welcome to add your comments to this post and share your triumphs and tragedies in your quest of being “understood.”

You can be assured, that as a PKD patient myself, that you will be “understood!”

Thanks!

Peace and Blessings!

Coach Richie Perl