ICN Support Forum Guidelines
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. If you are newly diagnosed, we strongly suggest that first read the educational information on our website rather than our forum. Don’t guess about treatments and IC information. You need good, high quality information. You can also find excellent books written by leading IC experts at: http://www.icnsales.com
2. Always remember that message boards are given with the goal of allowing patients to VENT.
You know those days when IC is flaring and your temper is on a hair trigger? You’re sleep deprived and/or frustrated with a family member that just doesn’t get it?? Well, rather than vent inappropriately to a family member (or kicking the dog.. which is always bad!), we want you to come here and vent if you need to. Why?? Because we get it. When you talk with an IC patient, they understand much of what you’re going through. So, feel free to vent but DON’T attack anyone by name, including family members, friends and doctors. Believe it or not, many of them may be reading the boards. Take a deep breath, relax and then reach out.
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. You should not attempt to provide psychological counseling. It is not your responsibility 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. Suicide Mentions / Threats
Patients with suicidal thoughts deserve the best care available and the ICN staff, volunteers and members do NOT provide psychiatric care or suicide intervention support. If you are having suicidal thoughts, you must call 911, visit the emergency room and/or contact your local suicide hotline. For liability reasons, all discussions which mention suicide will be edited and/or deleted to protect both the patient and members who might try, without proper training, to intervene. ONLY TRAINED MEDICAL EXPERTS can and should attempt to help someone who is actively suicidal. If you see a post which mentions suicide, please report that post immediately by clicking on the triangle symbol at the bottom of the post.
6. 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.
7. 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. In some of our boards, such as the “complex cases” boards, you will read pretty awful stories… but these only happen to a small, often very small, minority of patients who have other contributing factors which are influencing their health. Do NOT assume that their experience will happen to you. IC is VERY individualized.
8. 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.
9. If you feel overwhelmed, take a break for a days and catch your breath.
If you’re feeling vulnerable, take a break from the boards. What could be better than sitting in the sunshine or walking on the beach to clear your mind and rejuvenate your spirit. Physical activity is vital to our health and, unfortunately, working on the web just isn’t enough to keep us healthy and at peace.
10. Life doesn’t end with IC.
We have millions of people with IC in the world, most living healthy and productive lives. Judges, military officers, housewives, famous actors, teachers, doctors, nurses, NASA space scientists… the list goes on and on. Yes, their bladder is their vulnerable point but with basic self-help (i.e. such as following the IC Diet) and the use of treatments, most IC patients live comfortably. 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.
11. Please post encouraging messages.
Your goal is to inspire others to take action and move forward in a positive direction. You should never discourage a patient from talking with a medical professional. You should ENCOURAGE it at every opportunity, including getting a second opinion, etc. etc.
12. 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. Be VERY cautious of anyone on-line who suggests that they have a “cure” for IC or that you can be treated by phone. There are scammers on-line and while we do our best to block those from our site, you’ll find plenty of ads on the web promoting false cures. Or, worse, you’ll find sales reps pretending to be patients to get you to buy their products by using a fake “success” story. Be cautious and ask for research which supports what they are saying. If there is no research, we suggest that you walk away!
13. Your real life is always more important than cyberspace.
Family always comes first. Nuff said!
14. Debate the message, not the moral character of its poster.
If someone writes a post which you find hurtful, please report it 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.