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Online Communities: Helpful If You're Careful

For information and support, many of us turn to the Internet — blogs, social networking sites, websites and chat rooms.

It’s often comforting to read about the experiences of others. You can find out about what feelings are common or "normal.” And you can learn warning signs of potential problems.

Benefits and Cautions

You also can find inaccurate diagnoses and misguided advice. As you consider the benefits of joining an online community, it’s a good idea to do so with caution:

  • Benefit: Community support — In a way, it's like having a group of instant friends to consult. There are many stories of patients and parents who have found special comfort by sharing information with others who are going through the same thing.


  • Caution #1 — Never give out personal information that can identify you or allow someone to contact you. While you may feel like contacting someone in person, you can put your personal and financial safety at risk by posting your personal information on the Internet.


  • Benefit: Information on rare conditions — By joining a bulletin board or visiting websites about rare conditions, you can learn how other people are being evaluated and treated. Since rare conditions are not as well studied or seen as often by physicians, you might learn a lot from someone else going through the same thing.


  • New treatments — Both for rare and common conditions, you can find out about additional treatments that your health care professional might not have discussed with you.


  • Caution #2 — Make sure that you discuss any new treatments or ways to self-treat with your health care professional before you try them at home. There may be reasons why in your case a different treatment won't work or could negatively interact with your other treatments.


  • Benefit: Practical advice — Someone's experience can offer others an excellent source of information. Many health care professionals can give you the facts on treatments but perhaps not the finer points of how to make them work.


  • Caution #3 — Before taking action on any suggestions, call your doctor's office to inform him or her of what you are considering and why. Your doctor will let you know whether it's safe for you to try and may appreciate learning the tip to convey to other patients.

Additional Safety Tips

  • Advice online should never prevent you from calling your health care professional. If your first thought was to call about a symptom or you were told to call for certain symptoms, don't let anyone persuade you not to do this.


  • Listen if someone advises you to call a health care professional. Pay attention if an online contact encourages you to get professional advice. The safe course of action is to call.


Last updated August 30, 2011


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