We finished Part 2, talking about using your common sense. This goes for the "relationships" with the people you meet online too! I know, I know, this is the second decade of people having computers online in our homes and offices, and everyone should know to keep their private information to themselves when "talking" to other people online. Common sense, and following a few basic safety rules will keep you and your family safe as you navigate online.
- Make a commitment to anonymity....at least at first. "Lurk" for awhile as you read online message board or facebook posts. Use a masked name and don't use your real picture until you are quite sure the forum is private. Although I used the nickname "Julie B" from the beginning on the ICN message board forum, I didn't disclose too much information right away. Now, of course, I am a semi-public figure because of the books I have written, but I am telling you to do as I say and not what I do. :-) Keep your personal email, phone number, address, and full name to yourself.
- Try to assess the personality not only of the individuals but of the community. Look for positivity and encouragement, even though you know interstitial cystitis/painful bladder syndrome can be a very depressing situation. Remember, people who feel good are not as likely to post frequently, so there may seem to be many more desperate people than there really are in the community of IC patients.
- Carefully research all information you read and advice you get from online forums. For example, I have seen too many cases of patients who whittled down their food choices to only a dozen foods because they refused to eat any food that any one person said gave them a flare. Learn from others, but always discriminate whether the information applies to you or not. Food sensitivities vary so much from individual to individual, that it can be dangerous to limit your food choices unnecessarily. For more guidelines on how diet can help, see the IC Food List.
- Talk about potential treatments with your physician before you try anything on your own. Many patients, myself included, were clued in about various treatments and medications by other patients, but it is important not to act on your own. One person's medication could interact with another condition or medication that you have. It doesn't mean the information you gather is bad, just be sure to check with your physician before you try something.
- Finally, although I don't want you to be afraid to make friends online, I also don't want you to forget the people in your "real" life. I have to say two of my best friends today are people I met way back in 1998 when I first found the ICN forums, but that is a rare situation that is likely precipitated by me being so active in the IC Community. Your family, your friends, your church community, your co-workers, and your neighbors are the people in your life on a daily basis. Real is always better than virtual. It really is.
Author, Speaker, Patient Advocate
Helping Yourself Is the First Step to Getting Well
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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