icnmgrjill
08-16-2005, 12:03 PM
About once a month, we have someone who gets angry that they have a post deleted in our message boards and suggest that they have the right to free speech. I agree in general.. but, hey, this is no place for personal attacks nor can we have any postings that can place us in legal jeopardy.
So, I thought I'd take a shot at updating our newbie orientation and board guidelines. This is what I've got so far.... and the first five are new and kind of rambling. Any comments, suggestions or additions??? I'd greatly appreciate your thoughts!
--------
New Visitor Orientation & Board Guidelines
Welcome to the IC Network message boards. Our definition of online support isn't about IC patients talking endlessly about pain or misery. The goal of the ICN is to encourage patients to take action and get involved in their medical care. We want you to leave this (and all of) our activities feeling happy and hopeful.
Just like IC support groups, our message boards present a variety of challenges because of the many needs of our participants. The great majority of visitors are newbies, who are looking for basic information and support. On the other hand, there are other IC patients who may ask for help during a personal crisis that may, or may not, involve IC. These do not always work well together which is why we have so many diverse boards.
We hope that the suggestions and guidelines below will help you, and help us, keep our boards and chats in perspective AND a wonderful support environment.
1. Don't rely on the message boards for your IC education! They are ONLY a place for you to meet others. Please take the time to review our patient handbook and research materials as you learn more about IC. If you are newly diagnosed, we strongly suggest that you purchase the IC Survival Guide and/or our newly diagnosed kit from our shop! You can find that at: http://www.icnshop.com
2. Always remember that some message boards, such as Just Venting, are given with the goal of allowing patients to VENT. Don't take any message personally. Don't READ TOO MUCH into any message. Please remember that some messages may just be someone who needs to let go for a while. (this should probably be combined with the next one)
3. Patients in pain may say things they don't mean to say... or read into messages things that weren't intentioned. We have a motto on the ICN boards. Practice forgiveness when reading postings and don't take any message personally. We all have good and bad days. If someone replies to any of your postings in a negative way, please remember that it may have absolutely nothing to do with you. That patient may have had a horrible day, be in pain and be very frustrated... and have let it out at you. If someone bothers you over time, then you can block their messages in your user control panel. Don't hesitate to block anyone... as this is a very useful tool.
4. Keep your on-line cyber friends in perspective and don't get overly involved in the life of a complete stranger. Cyber relationships can be fulfilling and you might create some good, long term friends as we have. But, the odds also show that you may meet some people who offend you or that you disagree with. You'll notice that we don't have any religion or political boards. Why? Because they created too many fights and conflicts among members. We urge you NOT to get involved in the personal problems of other patients. It is not your responsiblity to fix their problems. You should never send anyone money or medications. Always encourage patients who are struggling to call their doctor and make an appointment.
5. Under no circumstance should you libel or slander any physician, medical care provider or any ICN user publically. If you do so, you endanger yourself and possibly the ICN to legal action. Remember, your experience with a physician may be dramatically different from others. Please do NOT attempt to influence the relationship between a patient and a medical care provider in a negative way.
6. Please remember that IC is very individualized. A small percentage of ICers may have extreme symptoms, while others have none. Most of us live comfortably in the middle.
7. ICers who feel better usually don't post that they are feeling good, yet there are thousands out there who are. Carry that thought with you as you read any sad or depressing messages. Don't let negative posts depress you. There are many more positive stories beneath the surface, if you just look for them.
8. If you feel overwhelmed with what you are reading in any internet board, take a break for a days and catch your breath. It is okay to leave and then come back. Remember, it's JUST people talking.
9. Life doesn't end with IC. Keep it in perspective! What happens to someone else is NOT your reality, nor should you worry about that. We are all unique individuals, with very unique IC experience.
10. Please post encouraging messages. Your goal is to inspire others to take action.
11. No patient on-line is a medical authority nor can they, or should they, give you medical advice. Always review any medical information you receive online with a trusted medical care provider. Only they can give you medical advice.
12. Your real life is always more important than cyberspace. Family always comes first.
13. Remember the on-line theme of "debate the message, not the moral character of its poster." If someone writes a post which you find hurtful, please contact ICN Donna or ICNMgrJill immediately so that we can review the post and delete it, if needed. If you receive unwanted e-mail from an ICer, or recurring mail which annoys you, you can block the e-mail and/or delete the posts. Please help us keep these boards safe by telling us if anyone is bothering you.
So, I thought I'd take a shot at updating our newbie orientation and board guidelines. This is what I've got so far.... and the first five are new and kind of rambling. Any comments, suggestions or additions??? I'd greatly appreciate your thoughts!
--------
New Visitor Orientation & Board Guidelines
Welcome to the IC Network message boards. Our definition of online support isn't about IC patients talking endlessly about pain or misery. The goal of the ICN is to encourage patients to take action and get involved in their medical care. We want you to leave this (and all of) our activities feeling happy and hopeful.
Just like IC support groups, our message boards present a variety of challenges because of the many needs of our participants. The great majority of visitors are newbies, who are looking for basic information and support. On the other hand, there are other IC patients who may ask for help during a personal crisis that may, or may not, involve IC. These do not always work well together which is why we have so many diverse boards.
We hope that the suggestions and guidelines below will help you, and help us, keep our boards and chats in perspective AND a wonderful support environment.
1. Don't rely on the message boards for your IC education! They are ONLY a place for you to meet others. Please take the time to review our patient handbook and research materials as you learn more about IC. If you are newly diagnosed, we strongly suggest that you purchase the IC Survival Guide and/or our newly diagnosed kit from our shop! You can find that at: http://www.icnshop.com
2. Always remember that some message boards, such as Just Venting, are given with the goal of allowing patients to VENT. Don't take any message personally. Don't READ TOO MUCH into any message. Please remember that some messages may just be someone who needs to let go for a while. (this should probably be combined with the next one)
3. Patients in pain may say things they don't mean to say... or read into messages things that weren't intentioned. We have a motto on the ICN boards. Practice forgiveness when reading postings and don't take any message personally. We all have good and bad days. If someone replies to any of your postings in a negative way, please remember that it may have absolutely nothing to do with you. That patient may have had a horrible day, be in pain and be very frustrated... and have let it out at you. If someone bothers you over time, then you can block their messages in your user control panel. Don't hesitate to block anyone... as this is a very useful tool.
4. Keep your on-line cyber friends in perspective and don't get overly involved in the life of a complete stranger. Cyber relationships can be fulfilling and you might create some good, long term friends as we have. But, the odds also show that you may meet some people who offend you or that you disagree with. You'll notice that we don't have any religion or political boards. Why? Because they created too many fights and conflicts among members. We urge you NOT to get involved in the personal problems of other patients. It is not your responsiblity to fix their problems. You should never send anyone money or medications. Always encourage patients who are struggling to call their doctor and make an appointment.
5. Under no circumstance should you libel or slander any physician, medical care provider or any ICN user publically. If you do so, you endanger yourself and possibly the ICN to legal action. Remember, your experience with a physician may be dramatically different from others. Please do NOT attempt to influence the relationship between a patient and a medical care provider in a negative way.
6. Please remember that IC is very individualized. A small percentage of ICers may have extreme symptoms, while others have none. Most of us live comfortably in the middle.
7. ICers who feel better usually don't post that they are feeling good, yet there are thousands out there who are. Carry that thought with you as you read any sad or depressing messages. Don't let negative posts depress you. There are many more positive stories beneath the surface, if you just look for them.
8. If you feel overwhelmed with what you are reading in any internet board, take a break for a days and catch your breath. It is okay to leave and then come back. Remember, it's JUST people talking.
9. Life doesn't end with IC. Keep it in perspective! What happens to someone else is NOT your reality, nor should you worry about that. We are all unique individuals, with very unique IC experience.
10. Please post encouraging messages. Your goal is to inspire others to take action.
11. No patient on-line is a medical authority nor can they, or should they, give you medical advice. Always review any medical information you receive online with a trusted medical care provider. Only they can give you medical advice.
12. Your real life is always more important than cyberspace. Family always comes first.
13. Remember the on-line theme of "debate the message, not the moral character of its poster." If someone writes a post which you find hurtful, please contact ICN Donna or ICNMgrJill immediately so that we can review the post and delete it, if needed. If you receive unwanted e-mail from an ICer, or recurring mail which annoys you, you can block the e-mail and/or delete the posts. Please help us keep these boards safe by telling us if anyone is bothering you.