| Internet Support Networks: Suggestions for a Safe & Sound Experience Elizabeth A. Pector, M.D. Spectrum Family Medicine |
| I'll be the first to admit that Internet groups can offer valuable empathy, information, and insights to help you cope with a difficult illness or challenge. I've leaned heavily on several online groups to get through complicated situations in my own life. The tips and links on this page will help you get the most out of your own experience on Internet support networks. 1. There are both pros and cons of online support. Groups can offer 24/7 interaction to help you cope with rare illnesses or caregiving difficulties. Writing about stressful issues has been shown to improve health for people with chronic illness or mental health problems. Going online eliminates prejudice based on your age, race, gender, appearance or disability, and some people feel more comfortable disclosing private concerns online than they do in person. If you have a rare condition, you're more likely to find help online than down the street. However, it pays to be fully informed of your options (and of the possible negative aspects of online groups) so you can pick the right forum for your personal needs. 2. Know the limits of Internet support. No online group can substitute for personal attention from a physician or mental health professional. Seek a qualified professional to supervise your diagnosis and treatment. Don't delay in seeking help from a practitioner in your community if you feel you have a medical or psychological crisis. 3.There will likely be people with both more and less seriously forms of your condition in a group. You can't rely on advice from a random group of people to predict how you will respond to treatment.Try not to become either frightened or relieved about your own condition until you ask your own professional whether what you read about other people really applies to your particular case. 4. There are thousands of groups for almost every condition under the sun. These include subscription email services such as listservs; newsgroups like USENET; chats sponsored by AOL, IRC, and websites such as WebMD or HealthAtoZ; message boards at websites; bulletin board services; and groups hosted by researchers or hospitals. Some people with newer technology can access online audio- or video-conferencing. If the first group you choose doesn't seem to meet your needs, try another. If you post on a public system, be aware that anyone on the world can read what you write there for time immemorial. Public groups include USENET newsgroups, public bulletin boards and open e-mail lists, among others. To maximize your privacy and the quality of your experience, seek closed, private, and moderated lists. If a moderator is listed as a "doctor" or "therapist," verify their credentials. You might not want a Ph.D. in mathematics or a physical therapist coordinating your psychological support group. Ask private groups if there is a public archive of messages that random web surfers can access via search engines--if so, then you should still be careful what you reveal in those groups. 5. selfhelpgroups.org , American Self-Help Clearing House, Topica, and yahoogroups are good places to start searching for a group. PsychCentral offers a good listing of groups dealing with mental health issues. Cancer support lists are detailed at ACOR . Support groups for parents dealing with their children's disabilities can view a list of groups for a variety of conditions at Our-Kids.org and Disability List of Lists. Patients with rare conditions may wish to explore National Organization for Rare Diseases. Medical specialty society web pages, nonprofit and advocacy organizations, medical Internet sites, and personal web sites built by patients who have the condition you're interested in are other places to look for links to online support. 6. Respect the confidentiality of what is discussed in any groups you join. After all, you want anything you reveal to be kept private, too. 7. Use good Netiquette. Respect the different opinions, experiences and emotions of others. There is no single correct way to face a medical or psychological challenge. If someone criticizes something you posted, try not to take it as a personal attack. The other person may just have a different viewpoint. Avoid flaming people you disagree with. 7. The Internet filters out important components of nonverbal communication, including body language, tone of voice and facial expression. It is easy to misunderstand someone's written post. Clarify anything you find confusing, offensive or inaccurate with the author of the statement. 8. Much medical information on the Net is outdated, inaccurate, or controversial. Discuss any medical or therapy recommendations from online sources with your personal doctor, counselor or therapist. If your practitioner does not know much about the topic that interests you, he or she might be able to steer you to a medical librarian or other knowledgeable person who can help you find information you can trust. 9. There are also frequent stories circulated about needy, ill or missing children who need cards, letters or money, and Internet hoaxes and false computer virus warnings. Check about.com and snopes sites for reliable information about these stories and other "urban legends." 10. Protect your private information online, including name, age, location, employer, family members' names, social security number, credit card information, and personal photos. Be aware that an employer or others in your household could read your private e-mail. Consider setting up a separate account for e-mail with a private password if you are concerned about possible invasion of privacy. If you suspect you have been a victim of identity theft, contact your local police department and report which aspects of your identity seem to have been taken by someone else, and the steps you have taken in response. Contactcredit reporting agencies to report credit card fraud. Equifax, Experian, and Transunion are the main agencies. The Social Security Fraud Division, and the Federal Trade Commission online ID theft complaint form may also need to be notified of identity theft or impersonation. Other useful websites regarding ID theft are: Consumer.gov, IDtheftcenter, Privacyrights, and Identitytheft. 11. Be very careful with any e-mail attachments sent to you, even from online pals that you know very well. Viruses and worms have spread unintentionally through e-mail support lists. Never open a .exe file you didn't request or download personally! When possible, choose lists that forbid attachments. Run virus scanning and protection software regularly. For more information about true and false virus warnings, visit McAfee's virus information library. 12. Report offensive or abusive e-mails and spam to your list's moderator, or to the sender's internet service provider (ISP). See anti-spam for my ISP's suggestions on how to block spam or to identify full e-mail addresses to forward to the moderator, ISP or law enforcement. See Victimization Online for further information about identity theft, cyberstalking and other rare but disturbing Internet threats you should know about. 13. Children and teens are particularly vulnerable to inappropriate sexual solicitations online. A study in the June 20, 2001 issue of the Journal of the American Medical Association found in a survey of 1501 children that 19% of 10- to 17-year-old children who are regular Internet users have received such advances. In some cases, contact by phone, mail or in person followed an online approach by a stranger. Children or teens who participate in online support networks, chat rooms, etc. need to be very careful about what they reveal. Safekids.com gives general background for children and adults on the benefits and risks of childrens' online activity. More information is available at Microsoft's site on online safety, and at KidsOnline. An excellent set of rules for children's Internet safety is sponsored by National Center for Missing and Exploited Children. The same organization offers a service, Cybertip, where you can report online sexual solicitations that have been made to minors. 14. People can sometimes assume fake identities and make up stories in order to fill needs for attention, sympathy, or control. Be skeptical of others' stories. If they sound outrageous, it might be because they're completely untrue. M.D. Feldman in an article titled "Munchausen by Internet: detecting factitious illness and crisis on the Internet," reveals some of the characteristics of hoaxers, and the responses of those who were fooled. You can read some anecdotes from Dr. Feldman's experience at Medsupport.org. A summary of his findings in the Munchausen by Internet article includes the following:: a) Online tricksters often restate material available elsewhere on the Net without adding anything new. Long posts from the "patient" don't seem to match the seriousness of their illness. The details of their story may keep changing. Dramatic crises followed by miracle cures and more crises keep happening to the "patient," especially when another group member starts getting attention. The "patient" may complain he doesn't get enough support from the group. However, he'll resist phone contact or personal meetings, creating strange excuses to avoid these encounters. "Family members" or "friends" who post while the member is supposedly in the hospital or after his/her purported death may have the same writing style, misspellings, grammar mistakes etc. as the "patient." b) When confronted with her lies, a culprit may protest her innocence, get angry at other group members for not believing or supporting her, or suddenly quit the group. Some perpetrators admit their lies but don't apologize. They might blame and make fun of other group members for being gullible. c) Typical reactions of group members who were fooled by a false story include anger, sadness, amusement, embarassment, hurt, fear and/or distrust. Some group members don't want to accept that a story was a hoax. Others want to confront the perpetrator or seek revenge. Some members stay in the group to work through their feelings, while others may quit in disgust. 15. If researchers distribute surveys, or announce they want to study your support group, ask for the name of their institution and verify their identity before revealing private information. Also make sure you understand the benefits and risks to you of participating in their research. Ask if and how your identity will be kept private, how information will be used, and whether you can receive a copy of the information or article after the research is completed. The list moderator for a group should ideally confirm that researchers are legitimate, and that their proposed projects are appropriate for the group. It is possible that employers, housemates or employees at computer networks could intercept your research-related e-mail, or such an e-mail might get misdirected to the wrong recipient. If you are concerned that responding to a survey by e-mail could jeopardize you in any way, ask if you can send a response by snail mail instead. Ethical Internet research guidelines for human subject research have been posted at AAAS. 16. If you decide to meet someone from an online group, it's a good idea to exchange photos, letters and/or phone calls first. Children or adolescents should always bring a parent along to any proposed meeting. Consider renting a post office box to protect the security of your home address if you expect to receive much mail from online sources. If you have any doubts about a person you want to meet, do some background checking if at all posible, e.g. verify their address, employer, school, etc. Meeting in a crowded public place such as a restaurant, shopping mall, school campus, or hotel lobby is wiser than meeting an unknown person at their home. 17. If you are thinking of starting your own group, check the hints at The American Self-Help Clearinghouse (which outlines how to set up a yahoo newsgroup) and PsychCentral. (which outlines how to start a new Usenet newsgroup, along with other very helpful tips). When you start your group, it's important to post a disclaimer that your group is not intended to be a source of professional medical or psychological treatment. It is best to promote it as a place to share information, advice, feelings and encouragement. If you elect yourself as list moderator, be sure you're prepared to handle problems on the list, including anger, hurt feelings, crisis or deception by list members. If you have just recently been diagnosed with a serious illness or have an active mental health condition, check with your personal health provider to see if it is a good idea for you to start a group at this time. Your own mental and physical health must come first. Discussing support group dynamics with the coordinator of an in-person support group in your community will give you some idea of the things that can happen in support groups. Co-moderating with someone else might decrease your burden. For general information about self-help groups, or to find other existing groups, check Mental Health Net. 18. Internet addiction is a recognized disorder that can damage social and occupational aspects of the addict's life and interfere with personal intimate relationships. The more time people spend online, the greater the risk of isolation and/or depression. Visit Netaddiction.com for information about this condition. Real-time communication in chat rooms and MUD's are more heavily used by cyber-addicts than news groups, e-mail and the web. Search for less-addicting forums if you think you're at risk of abusing online privileges. Introverts and teens are at greatest risk. 19. This leads us back to point number 1: recognize the limits of cyber support. Your own personal network--family, friends, neighbors, medical and mental health professionals, colleagues, religious congregation, social clubs, and your community, must ultimately be the most important source of help for you in coping with health challenges. The Internet can supplement these resources, but it can't replace them. Nurture your real relationships, and the virtual ones will take care of themselves. |
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