Finding Support On-Line
Self-help online
As more and more ill people connect through online support groups, the founder of one big website gives savvy tips -- and warnings.
By Peter Waite
Try sharing information, opinions and feelings with others who are hurting.
More than 10 years ago, I was dealing with a medical situation. I went online and was surprised by the lack of an outlet in which ordinary people like me could share information or find an empathetic ear. For those who are hurting, the Internet offers more than the presentation of medical facts; it is an outlet for personal connection.
That's when I launched my site, HealingWell.com, which contains 30-plus forums -- also known as online discussion groups or bulletin boards -- in which hundreds of thousands of people exchange information, opinions and feelings every month. Today, there are many other outlets online that host similar health-related forums.
If you're seeking a discussion forum, keep in mind these simple, useful guidelines to ensure that your online pursuits are heading in the right direction:
Approach with both eyes open. Not all health support sites are created equal. Some sites are more interested in harvesting personal information, such as your e-mail address, to send to mass marketers (spammers). So research sites you intend to use. Read privacy disclosure statements carefully.
Look for sites that are moderated, meaning the conversations are reviewed with respect to appropriateness and tone. At HealingWell.com, for example, we use volunteer moderators who often suffer from the same ailment as the topic they oversee on our boards. These moderators also can sniff out "regular folks" who actually are promoting a product.
It also helps to make sure that a site has been reviewed or accredited by independent authorities, such as the Health on the Net Foundation (www.hon.ch), which verifies that health sites abide by certain principles of ethical and responsible behavior. You also should find out how a site is funded. If it's bankrolled by a drug company, it should be upfront about that.
Find a board that will help you. Every health-related category may have subcategories or highly specialized boards. You need to find the discussion board that deals with your situation specifically; a topic such as heart disease may have subtopics related to diagnosis, surgery, smoking and exercise. Also, make sure that the discussion board is active. Look for daily postings as you scroll down through the contents. If the last posting was a month ago, you may not get prompt answers.
Check your emotions. When you're posting on a discussion board because you're sick or a loved one is suffering, your emotional state is fragile. Most people taking part realize this and are sympathetic. But still, it's best to use a detached, information-seeking "voice." Making liberal, unnecessary use of fuming ALL CAPS letters and exclamation points may keep you from accomplishing your goals -- and alienate you from other users.
Sharing is good. Some people struggling with a disease may receive news that they're making a great recovery, yet they are reluctant to share this because it sounds like "gloating" in a forum used by fellow sufferers of the ailment. They shouldn't. The reason people flock to these chats is because they want to hear from those who are doing well -- and how they did it.
Similarly, some are reluctant to talk about their setbacks because they don't want to dole out bad news to the group or are afraid of being discouraging. Again, the whole point is to share. If you're alone and hurting, don't be afraid to seek out shoulders to lean on. Someone even may have something practical to offer, like a new remedy or just-released study.
Concise is nice. Users should seek to share, but they also should be respectful of everyone's time. So ask direct questions and avoid long personal histories or biographies. Do keep your messages as streamlined and relevant to the group as possible.
Maintain discretion and anonymity. What you post will be online for perhaps years, even decades, to come. Anyone who goes online will be able to call it up. So be sure that what you're writing won't identify or embarrass anyone you know. Never give out information that's private or reveals who you are. Before posting, take a look and ask yourself if you'd be comfortable posting this on a bulletin board at work or at church. Getting information from strangers in a public forum doesn't require you to reveal personal details.
Participate regularly. Make the bulletin board part of the recovery routine by checking in every day. You'll feel more empowered to take control over your own health care and less afraid to consult with your doctor about possible treatments. Which brings up ...
Check out everything with the doctor. Most people on the boards are well-meaning folks who want to help. But such users may offer advice that's not right for you. The forum is never a substitute for sound medical advice. An exercise that helped someone build bone strength may be too strenuous for you, and a new drug may not agree with other drugs you're taking.
Peter Waite launched HealingWell.com in 1996, and the site now averages more than 350,000 unique visitors a month.
