(This is the final part of a four part series on navigating health information on the internet. Here are the links to Part 1, Part 2, and Part 3).
As I was researching the information for this series, I found a great post written by Jill Osborne, President and owner of the Interstitial Cystitis Network addressing some of these same basic topics. A few of these things are a repeat of what I said previously, but I thought this was a great summary!
FACEBOOK SURVIVAL STRATEGIES by Jill Osborne, MA
Here are some important survival strategies for ours, and any other, health related web communities, especially the wild wild west of Facebook.
- A message board is a place for you to meet others. It is not, however, a substitute for medical care and consultation. While other patients may have strong opinions about therapies, tests and procedures, they cannot and should not give you medical advice. If you have any questions about your medical care, your physician is the most important person to consult with.
- Be a cautious, educated consumer. Beware of any patients and/or websites (i.e. acupuncturists, herbalists) offering personal consultations and herbal products by phone who suggest that they can heal, cure and help you recover from IC. We have received a growing number of complaints from patients who feel that they have been bilked for hundreds or thousands of dollars. When in doubt, ask for proof, a research study that proves that their product or service works specifically with IC. If they haven't invested their own money in proving their claims, why should you?
- Build your IC knowledge from multiple sources. Yes, patients can have excellent strategies to share but they can also be biased. There are several excellent magazines & books will help you understand IC therapies, pain care, diet and more. These are reliable and excellent resources for your IC information. We recommend the following:
* The IC Optimist Quarterly Magazine
* The IC Survival Guide by Robert Moldwin MD
* Confident Choices: Customizing the IC Diet by Julie Beyer RD
* Confident Choices: A Cookbook for IC and OAB by Julie Beyer RD
* A Taste of the Good Life: A Cookbook for an IC Diet by Bev Laumann
* Ending Female Pain by Isa Herrera PT
* Heal Pelvic Pain by Amy Stein PT
* IC Naturally by Diana Brady, MA, CNC
* The Better Bladder Book by Wendy Cohen RN
* The Happy Bladder Cookbook by Mia Elliot
* The Happy Bladder Christmas Cookbook by Mia Elliot
These are available for purchase in the ICN Shop (Disclaimer: The mission of Confident Choices is supported by a small commission if you purchase these books using the previous links.)
4. 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. We all, however, 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.
5. Your personal safety is important. Do not give out your phone numbers or identifying information freely. Keep your on-line cyber friendships in perspective and do NOT get involved in their personal problems. You should never send anyone money or medications. It is not your responsibility to fix their personal, family, or financial problems. Always encourage patients who are struggling to call their doctors.
6. Under no circumstance should you libel or slander any physician, medical care provider or any ICN (facebook) user publicly. If you do so, you endanger yourself and possibly the ICN or facebook page "owner" 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. 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. If you feel overwhelmed with what you are reading, 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.
8. Your real life is always more important than cyberspace. Family and friends who can be physically with you should always come first.
9. 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 leaders or facebook immediately so that we can review the post and possibly delete it. Please help us keep the ICN forum (and facebook pages) a safe and supportive environment by reporting if anyone is bothering you.
10. Don’t let desperation drive you to rash choices. There are now many therapies available that can help you control and manage your symptoms. If you’re not where you’d like to be, start again with the basics. Are you following the IC diet? Have you tried bladder coatings, rescue instillations, antihistamines, antidepressants?? If not, read up about it, talk with your doctor and explore your options! There is hope!
Once again, thanks to my dear friend Jill Osborne for her tireless efforts in supporting IC patients around the world!
Author, Speaker, Patient Advocate
For step by step guidance for creating your own personal interstitial cystitis meal plan, see: Confident Choices®: Customizing the Interstitial Cystitis Diet.
For some basic, family-style, IC bladder-friendly recipes, see: Confident Choices®: A Cookbook for Interstitial Cystitis and Overactive Bladder
For health care workers: Interstitial Cystitis: A Guide for Nutrition Educators
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