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Online Communities: Helpful If You're Careful
Last reviewed by Faculty of Harvard Medical School on January 14, 2013
By Alice Y. Chang, M.D.
Brigham and Women's Hospital
I was pregnant and feeling some squeezing sensations in my uterus. I wondered, are these what Braxton-Hicks contractions feel like? How do I tell them apart from real contractions? Even though my obstetrician reassured me that my symptoms were normal, my feelings did not quite match what I had been reading in pregnancy books.
Despite being a physician, I craved some community reassurance about my pregnancy symptoms, so I began visiting chat rooms to find answers to my questions. Throughout my pregnancy, I checked out an online bulletin board to see what others were going through and what I might expect with each month.
We probably all have done it at some point peered into a chat room or read through postings on a bulletin board. For me, it was comforting to read the experiences of other women. I learned a lot about what feelings were common or "normal" as well as warning signs of potential problems. In fact, I was impressed by the chat community's quick response whenever someone reported concerning symptoms. Within minutes of a posting, you would often see several messages encouraging a person to call her doctor thus validating the woman's concerns.
Benefits and Cautions
However, despite what online chat rooms and bulletin boards have to offer, there are still a lot of inaccurate diagnoses and misguided advice to be found there. Throughout my pregnancy, I made note of a few potential dangers of relying too heavily on such online advice. As you consider the potential benefits of joining an Internet community listed below, make sure you also heed the cautions included:
- Community support In a way, it's like having a group of instant friends or girlfriends to consult. I have heard of many patients and parents who have found special comfort by sharing information with others who are going through the same thing.
- Caution No. 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.
- 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 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 No. 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.
- 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 it work.
- Caution No. 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.
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Additional Safety Tips
- Advice online should never prevent you from calling your own health care professional. If your initial instinct was to call about a symptom or you were instructed to call for certain symptoms, do not let anyone convince you out of doing this.
- Listen if someone advises you to call a health care professional. While you don't want to be convinced out of contacting your health care professional, you should listen to someone who urges you to seek professional advice. It can't hurt and is safer to call.
- Beware of advice regarding alternative medicine or herbal supplements. Just because you can get it without prescription doesn't mean it's safe. For example, on a pregnancy health website, I have seen recommendations for herbal therapies. But most herbal remedies have not been tested in pregnant women and their effects on the fetus are unknown. Review herbal and alternative therapies with your health care professional before trying them.
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The Bottom Line
Having the online support from people who have similar health concerns or a shared medical problem can be very positive. But in the same way you wouldn't rely solely on the health advice from a stranger in a supermarket, you should make sure to consult with your health care professional whenever you consider changing a treatment or trying something new.
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Alice Y. Chang, M.D. is a former instructor in medicine at Harvard Medical School. She is currently associated with University of Texas Southwestern Medical Center. Her clinical interests and experience are in the fields of primary care, women's health, hospital-based medicine and patient education.