Given that this is the age of “Social Media,” I was wondering how Polycystic Kidney Disease patients feel about these sites. Facebook, Twitter, LinkedIn (the general sites) and KidneySpace (for all kidney diseases) HopeSquare (sponsered by the PKD Foundation), and DailyStrength (which covers all aspects of health and has a Polycystic Kidney Disease discussion group).
All these sites perform helpful functions. Yet, I sense that there is something missing.
Maybe I’m going a bit deeper than most people, but…that’s me!
For me, the social sites do give you the opportunity to connect with people that you wouldn’t ordinarily connect with. And, assuming that the other person wants to connect with you (which is not an automatic assumption!), this is good!
The question is the level of connection. I just get the feeling that there are PKD patients out there that may need a level of connection with other patients that the social sites don’t provide. Here’s what I mean:
The social sites correctly provide great privacy. You reveal only what you want to reveal. This, of course, is how it should be. The question for PKD patients looking to have a deeper connection is, what’s NOT revealed? How do you develop the trust so that one patient feels ready for a somewhat deeper connection with another?
It can be done, of course. You can use the “chat” function, and use private messages, and even request personal e-mails for more detailed communication, as the trust develops.
This is fine for individuals. I don’t know about you, but I would like to know as many PKD patients as possible!
Yes, I certainly would like to apply my training to help patients experience the highest quality of life possible for them.
And I’m also aware how positive local PKD Foundation chapters can be when patients and their families interact face-to-face! No social site can provide what face-to-face contact can!
Do you think that weekly conference telephone calls might be useful in bringing the “real-time” dimension in having PKD patients connect with each other?
I’d like to know what you think! Please add your comment below or contact me at
and perhaps we can make something happen!
Let’s keep the conversation going!
Peace and Blessings!
Coach Richie Perl
Certified Professional Coach
Certified Trainer of Neuro-Linguistic Programming
Ten years ago I felt desperate and alone in this disease. Today, I can honestly say that because of the PKD Foundation and the internet I have found both a comfortable niche as well as my PKD voice. From the very first phone call connecting me to others with PKD in my area my life truly began to change for the better. I can’t even say that it was the ‘misery loves company’ thing, as much as my curiosity about PKD that sent me on my quest to find an identity and connection with others in the same boat……I have zero family history of PKD so my desire to learn about this disease and its affects have motivated me to branch out rather than hide. I personally would rather have a crystal ball into my future than be mowed over by unpleasant surprises.
When I attended my first PKD convention I met many, many amazing families, patients, care givers, doctors, researchers, and staffers who all ‘got it.’ I think that surrounding yourself with people who understand your feelings, emotions is very important. I feel sorry for people who chose to hide and not connect with others or face their fears….I see nothing good that can come out of that situation. However, PKD seems to be one of those diseases that lends itself to staying ‘in the closet.’
I would have to agree with you, Richie, when you suggest the possibility of finding a more intimate place for PKD patients to congregate and connect as something worth exploring. Not everyone has a PKD chapter or ‘buddy’ to talk to….not everyone wants to deal with computers….hearing a voice and engaging in real time conversations might be helpful.
Getting such a program up and running could be challenging….perhaps it’s something that can be suggested to the PKDF Volunteer or Education Departments? It would take some coordinating and some expense to execute. The one thing I do know is that for something like this to be successful it would need to be ‘free’ to the pubic.
I feel there are people like myself when I started dialysis had questions to ask but needed answers from someone already doinig it.The same is true for when I started peritoneal dialysis.There are questions to be answered after you have had major surgery like miself when they took my kidneys out(like what it is like not to have to pee anymore and the questions people will ask you) sometimes the best person to answer is someone who has been there and done that and having to keep a positive attutide.
Thanks
Steve
Hi, Karyn!
Seeing as you just joined the Renal Support Network page on Facebook, I’m sure you’re aware that they have somethiong called HopeLine, which is a telephone number which connects Kidney Patients to someone who has kidney disease and offers specific information and I suppose, uplifting support.
I don’t see why something like this can’t be done. There would have to be a bit of training, but I don’t believe too much. There could also be a “network” of folks who could be on an available “buddy list,” perhaps classified by age-range, gender, geographic location, etc. who might be available to be buddies. (once someone has a “buudy,” they would be temporarily off the list.
Anyway, I think you get a bit of my vision!
Peace and Blessings!
Coach Richie Perl
Hi, Steve!
You are absolutely right!
We need to have a community that is more than merely on-line comments on a message board, however good those are.
Keep On Truckin’!
Coach Richie Perl