Coping with IC is easier if you have a caring network. Many people with IC find this support virtually through a variety of online forums including message boards, chat rooms, blogs, and Facebook pages. In addition to your family, friends, and healthcare team, you can gain invaluable support from other patients who understand the unique challenges of living with IC.
Though online support networks offer an easy way to connect with others with IC, embrace the same internet safety precautions you follow with any online experiences.
Online Safety Tips
WiredSafety, a nonprofit organization dedicated to online safety and education, offers tips for participating in online forums. The following list is from the WiredSafety website:
- Anything you type in a chat room can be seen by everyone who is using that chat room so be careful what you type. In cyberspace the walls don’t so much have ears as eyes.
- Choose an non identifiable, non gender specific screen name (and keep it clean!)
- Never give out any personal information whilst chatting online. That means your real name, telephone or cell phone number[s], mailing address, passwords, banking details etc. Ignore requests for personal information like A/S/L and be vague with responses to questions like WITW.
- Never accept files or downloads from people you don’t know or from people you do know, if you weren‘t expecting them. This includes URLs.
- Never arrange to meet someone offline that you only know through chat room conversations.
- Make sure you know how to save copies of your chat room conversations.
- Make sure you now how to report problems to the chat room moderator. [If you are concerned that a forum member is feeling desperate, alone or hopeless, pass this information along to the moderator immediately.]
- Remember your Netiquette and be nice! Don’t send mean chat messages, get involved in chat room arguments (flaming) or incite others to do so.
Be a Savvy Patient and Educated Consumer
Some for-profit groups sponsor online support forums as value-added services to help sell IC- related products and services. Many online forums also accept paid advertisements. Consult with your healthcare provider about any course of treatment or medicine discussed in the forums, chat rooms, blogs, and other online support forums. Talk with your doctor before trying any dietary supplements or making changes to your IC treatment plan.
Also, be an educated consumer. Conduct an independent review of all products or services before you make a purchase. If you check around, you may be able to find consumer reviews of the product and a better price. Online support groups may ask for “donations” to help defer operational costs. Donations made to for-profit sites are not tax deductible. To find out if your donation is tax deductible, search the GuideStar database of not-for-profit organizations. If the group is not listed, your donation is most likely not tax deductible.
Revised Monday, March 30th, 2015