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How can I please everyone?
I wish that I had just the right answer here. .. but I don't. So, this is what I've observed.
In one board, we were trying to offer support to three very complex groups of patients:
(A) Newbies who are considering a variety of nerve stimulation procedures, from SANS to interstim.
(B) Patients undergoing trials or early treatments.
(C) Patients with positive results from surgery or SANS.
(D) Patients with negative results.
Newbies need factual information. Their job is to gather pros and cons of the treatment.. talk with their doc as they make their decision.
As they undergo trials, they'll want the chance to talk with patients who have also had trials so that they can get the useful, vital support that they need (i.e. for simple issues like can I drive with an implant?"
Patients with success stories are here to inspire patients. Thank god for you. Thank goodness that you found something that worked for you. While we all understand that none of us can predict the outcome of how a patient will respond to a trial or surgery, you can be role models for patients .. and give them hope.. that the procedure can be helpful.
Patients with failures.. or non successful outcomes.. have a completely different set of needs. They don't want to hear about your success stories. They need a shoulder to cry on. They need to know that they are not alone. They need to be able to talk with others that it didn't work for.. so that they know what other options they have. They need to commiserate. They need to work with often very intense feelings of despondency.
So.. this is much like the old newbie versus IC veteran debate. Newbies have totally different needs that grizzled veterans. I know you've already seen this on our boards.
Please.. don't take this the wrong way and perhaps my name choices aren't the best.. and I'm open to suggestions. But this is a complex need.. that's more demanding that one specific board.
Don't look at this as a means to divide. In fact, what it should allow us all is the opportunity to offer heartfelt support to these very different groups of patients... with compassion... with an understanding for their specific needs.. and with true support.
But.. here's an idea. I'm going to make another board.. called "Considering Nerve Stimulation?" This is where newbies can ask questions?
I'm going to keep the other two boards.. because they solve very specific needs in my mind. Let's try it out for 30 days and see what comes of it. If it doesn't work, I'll be the first to admit it.
Jill
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"What do we live for if not to make the world less difficult for each
other." - George Eliot
The Interstitial Cystitis Network
5636 Del Monte Court
Santa Rosa, CA USA (95409)
Voice: 707.538.9442 FAX: 707.538.9444
The information in the IC Network is provided with the understanding that IC Network, its founder, staff, volunteers, and participants are not engaged in rendering medical or professional medical services.
In one board, we were trying to offer support to three very complex groups of patients:
(A) Newbies who are considering a variety of nerve stimulation procedures, from SANS to interstim.
(B) Patients undergoing trials or early treatments.
(C) Patients with positive results from surgery or SANS.
(D) Patients with negative results.
Newbies need factual information. Their job is to gather pros and cons of the treatment.. talk with their doc as they make their decision.
As they undergo trials, they'll want the chance to talk with patients who have also had trials so that they can get the useful, vital support that they need (i.e. for simple issues like can I drive with an implant?"
Patients with success stories are here to inspire patients. Thank god for you. Thank goodness that you found something that worked for you. While we all understand that none of us can predict the outcome of how a patient will respond to a trial or surgery, you can be role models for patients .. and give them hope.. that the procedure can be helpful.
Patients with failures.. or non successful outcomes.. have a completely different set of needs. They don't want to hear about your success stories. They need a shoulder to cry on. They need to know that they are not alone. They need to be able to talk with others that it didn't work for.. so that they know what other options they have. They need to commiserate. They need to work with often very intense feelings of despondency.
So.. this is much like the old newbie versus IC veteran debate. Newbies have totally different needs that grizzled veterans. I know you've already seen this on our boards.
Please.. don't take this the wrong way and perhaps my name choices aren't the best.. and I'm open to suggestions. But this is a complex need.. that's more demanding that one specific board.
Don't look at this as a means to divide. In fact, what it should allow us all is the opportunity to offer heartfelt support to these very different groups of patients... with compassion... with an understanding for their specific needs.. and with true support.
But.. here's an idea. I'm going to make another board.. called "Considering Nerve Stimulation?" This is where newbies can ask questions?
I'm going to keep the other two boards.. because they solve very specific needs in my mind. Let's try it out for 30 days and see what comes of it. If it doesn't work, I'll be the first to admit it.
Jill
------------------
"What do we live for if not to make the world less difficult for each
other." - George Eliot
The Interstitial Cystitis Network
5636 Del Monte Court
Santa Rosa, CA USA (95409)
Voice: 707.538.9442 FAX: 707.538.9444
The information in the IC Network is provided with the understanding that IC Network, its founder, staff, volunteers, and participants are not engaged in rendering medical or professional medical services.