Advocacy and Recovery Using the Internet
National Mental Health Consumers’
The many attractive features of the Internet make it a powerful recovery tool. The worldwide web has thousands of sites that provide information about diagnosis, treatment, traditional mental health providers, and alternative treatments. We consumers can use newsgroups, message boards, chat rooms, and e-mail lists to communicate with others who can share their experiences and offer us their support. We can also use the Internet to simplify tasks that we might find more difficult than others do, such as finding housing or looking for a job.
Every day we hear that the Internet is a revolutionary communications medium, but for us consumers, it is truly revolutionary. At the Clearinghouse, we know first-hand that mental illness can be an isolating experience at times. Our society has made it difficult for us to talk about our conditions even when we do feel like talking about them.
How does the Internet change this? First of all, we have anonymity. When it’s tough for us to talk about our problems, we can look to the Internet as a way to communicate with others without having to reveal our identities. Second, it lets us quickly find others who understand what we’re talking about. Finally, for a monthly fee, we can talk as much as we’d like to people around the world and look for all kinds of useful information.
Finding information on the worldwide web
Using the worldwide web to locate information has the advantages of being quick, fast, and inexpensive. Right from your desktop, you can search for information in thousands of newspapers and hundreds of medical journals, browse the Library of Congress catalog, and of course find information that is only available on the web.
Although the web is an excellent place to find information about diagnoses and treatments, you of course should use this information as a supplement, rather than a replacement, for professional and peer-run services. Fortunately, the web is also an excellent tool for locating these services.
If you are fortunate to have a choice of doctors or health plans, one way to look for a provider or health plan is to look for a compilation of ratings. For example, the magazine U.S. News and World Reports performs an in-depth study of health care providers each year and publishes its ratings at<http://www.usnews.com/>. These ratings cover the best hospitals and HMOs, according to their studies. You can find information about a specific physician, e.g., training and prior disciplinary actions, through search services such as <http://www.askmedi.com/>. Similar information may be available on your state medical board’s web site. To find your state’s medical board, go to <http://www.docboard.org/>.
We at the Clearinghouse certainly recommend that you use the Internet to locate peer-run providers in your area. Thousands of consumer-run organizations serve communities in the United States.
The American Self-Help Clearinghouse (which covers all types of self-help and is not affiliated with the publishers of this Guide) is part of a much larger and very valuable Internet resource, Mental Health Net, which is headquartered at<http://mentalhelp.net/>. Mental Health Net is filled with descriptions of symptoms and treatments, and references to literature, but it is only one of many comprehensive mental health sites. Other comprehensive sites include iVilliage’s <http://www.onlinepsych.com/>, the Center for Mental Health Services’ <http://www.mentalhealth.org/>, Dr. Philip Long’s <http://www.mentalhealth.com/>, and the former Surgeon General’s <http://www.drkoop.com/>.
When using the worldwide web for diagnosis and treatment information, you should look for as many sources as possible. Because the main cost of the Internet is buying the equipment and paying a monthly fee, cost should not limit the number of sites that you visit. Comprehensive web sites like Mental Health Net offer plenty of useful information, but any single web site can have an editorial bias. The best approach is to use search engines to look for different viewpoints and then decide for yourself what to believe and what not to believe.
You might also wish to do your own research rather than look at information that has been prepared for you. Our federal government has spent a lot of money creating Internet resources that allow the user to sift through a wide variety of information rather than reading a prepared presentation. For example, the Library of Congress allows you to search its catalog of several million books at<http://lcweb.loc.gov/>. Using the National Library of Medicine’s MEDLINE service, located at <http://www.nlm.nih.gov/>, you can search several thousand biomedical journals and read the abstracts of articles for no charge.
If we continued to list resources for you, we’d never get to them all, and we’d take away another primary advantage to the worldwide web-that you can look from place to place until you find something that interests you. Start with the resources we’ve suggested, but discover new ones by using search engines and by following links from place to place.
The Internet as a mutual support tool
The Internet helps you to manage recovery in ways beyond using the worldwide web as a passive source of information. The Internet is a revolutionary support network because you can participate from home, can retain your anonymity, and talk to people throughout the world. Remember when you thought that you’d never meet another person who was like you and who understood you? You can get onto the Internet and immediately "meet" people who’ve been through many of the same struggles as you have. Not only can you benefit from their support, but you can also feel good that you are able to help others.
Some of the Internet tools that make such communication possible are newsgroups, message boards, chat rooms, and e-mail lists. Newsgroups, message boards, and chat rooms all are accessible through the worldwide web, and e-mail lists are available to anyone with e-mail.
We’ll discuss how to use these four types of communication to your advantage as a recovery tool and show you how to access them using the worldwide web. No matter which type of discussion forum you choose to use, some basic rules should guide your conduct. First, never make any commercial advertisements. Second, making personal attacks (or flaming) is a part of the Internet, but we don’t recommend that you participate because it defeats the purpose of mutual support. Third, send personal messages by individual e-mail, not in a public forum. There are other rules of "netiquette" that you can learn by trial and error, but following these three will make your life on the Internet much more productive.
Of the various interactive methods of communicating over the Internet, the newsgroup is probably the most effective recovery tool. Newsgroups grew out of the Usenet section of the Internet, which is separate from the worldwide web, and your Internet Service Provider (ISP) might be able to provide you with news reader software that runs more quickly than your web browser does. If that last sentence confused you, ignore it and read on, because you can find the same newsgroups on the worldwide web.
Anyone with access to the worldwide web can go to one of two sources,<http://www.deja.com/> or <http://www.listz.com/>, and locate, read, and participate in many newsgroups relating to mental health topics-and just about every other topic under the sun. We could list some representative newsgroups for you, but you’d be better off going to one of the two sites mentioned and searching for the newsgroups that most interest you using the excellent search tools provided there.
Newsgroups are great both for asking questions and for sharing your own expertise. A newsgroup contains many threads, each of which is begun by a person posting a question or comment. Anyone reading the newsgroup can post a response to any message in the thread. For example, suppose that you have been having a very difficult time relating to people at work because your depression has made interaction difficult. You could go to any of a number of depression newsgroups and ask how other people deal with co-workers. Supportive people who understand and relate to your situation are likely to respond.
Another area in which participating in a newsgroup can be helpful is discussing any medications that you are taking or are considering taking. Often when a doctor recommends taking a particular medication, the consumer is apprehensive about whether the medication will be effective and whether it will have any side effects. The newsgroup is the perfect forum to find out about others’ experiences on a particular medication, as well as to share any positive or negative experiences that you’ve had. In fact, there are newsgroups dedicated specifically to medication, which you can find easily through deja.com or liszt.com.
If you’ve been looking around on general mental health web sites already, you’ve probably seen links to message boards (also called "bulletin boards"). Message boards work similarly to newsgroups but don’t seem to generate as much traffic; this is probably because newsgroups are older and are more accessible by people with slower computers. However, an advantage to a message board is that the person responsible for maintaining it can delete inappropriate postings such as commercial advertisements, off-subject comments, and personal attacks.
Almost every general mental health web site, regardless of who controls its editorial content, offers one or more message boards that allow consumers the opportunity to share their insights with each other.
If you’re looking for a type of discussion that is most like talking to other people in "real life," then you might want to try a chat room. In a chat room, you can talk to others about anything you’d like, but many people enjoy going to chat rooms dedicated to specific topics. Chat rooms dedicated to mental health do tend to be supportive, but remember that other types of chat rooms might be less friendly. As with newsgroups, you can access many chat rooms on the worldwide web, but your own ISP might have software that facilitates participating in chat rooms.
As you might imagine, a problem with chat rooms, as opposed to newsgroups and message boards, is that to get any information or support, someone must be participating in the chat at the exact time you are. This doesn’t always work. As Ed Madara of the American Self-Help Clearinghouse puts it, "While newcomers usually romanticize about having real-time chat meetings, . . . much more mutual help is shared online through message boards than in real-time chat meetings."
You might find some excellent chat experiences, but don’t get discouraged if people aren’t available in chat rooms. One way to increase your chances of finding people with whom to chat is participating in the scheduled chats offered , Scheduled chats are generally moderated by an individual and often have "special guests," similar to a call-in radio or television show.
As with any type of discussion group, you’re better off finding a chat room that suits your needs and personality than just following our suggestions. If you’d like to look for additional chat rooms, go to a search engine likeand type "mental health chat." You’ll be surprised at how many hits you get, but remember that chats are only successful when enough people find them and are using them at the same time.
If you have e-mail, you can "subscribe" to any of thousands of e-mail lists that automatically send messages to your e-mail inbox. Even if you rely on the library for Internet access, you can get a free e-mail address at Lists vary in their accessibility: some restrict their membership; some only allow messages approved by the list manager; and some allow anyone to join and send messages to the group.
The advantage to joining mailing lists is that you receive messages automatically without having to look for them. However, this very feature can have a downside: as you join more mailing lists, your inbox might fill to capacity with messages that you don’t have any time to read. Therefore, we suggest discretion in joining e-mail lists.
Using the Internet to make your life easier
Most of us know that the "little things in life" can put more of a burden on us when we’re in recovery. If you are lucky enough to have Internet access, you probably already realize that the Internet can make your life easier, giving you more time to concentrate on recovery.
Some of the little things for which the Internet is particularly useful include finding out information from your health insurer, getting tax forms, shopping from home, and others too numerous to mention. You can also have fun with the Internet and use it to follow sports teams, read poetry, learn about dinosaurs, and find out about almost anything you can imagine. On a more serious level, the Internet also simplifies two tasks that have traditionally been a barrier to recovery: finding a job and locating housing.
The Internet has made finding a job much easier and much less intimidating. Although we consumers still have many challenges to face as we seek employment, the Internet can simplify both looking for a job and getting hired.
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