June 30, 2010

The Pros and Cons of the Virtual Hepatitis Community

From Charles Daniel, former About.com Guide

Updated June 22, 2009
About.com Health's Disease and Condition content is reviewed by the Medical Review Board

Joining a support group is a good way to learn about hepatitis (or any chronic disease) and to find out how other people work through the same problems you're probably having. Living with a chronic disease often requires lifestyle changes that seem overwhelming at first, but learning how other people handle them can make your life easier. Unfortunately, regularly attending a group may not be possible because of work or childcare schedules, or maybe there's just not a good group nearby. In this case, you could consider joining an Internet support forum. Are they just as good as a group that meets in person? As with most things, there are pros and cons.

Pros of Internet Support Groups

Anonymous. If you're uncomfortable letting others know you have chronic hepatitis, the virtual communities of the Internet offer relative secrecy and anonymity. For hepatitis, and any of the other stigmatized diseases, support forums can be places to post your questions and find information without revealing your identity. However, even though forums can be private, a good rule of thumb is never to post anything you absolutely wouldn't want to say aloud publicly.

Convenient. Even if you live in the biggest city that never sleeps, you can't find a support group that's always meeting. Traditional groups just can't compete with the 24/7 schedule of a virtual forum: they're always available. When you also take away the need to drive and park your car, the convenience of the online experience is unsurpassed.

Size. Traditional support groups tend to get difficult to manage if too many people attend. However, the Internet forum often thrives when hundreds participate. When more people log on, this means more eyes to read your posts and, hopefully, more responses for you.

Specific. Forums can be very specific. For example, there are online hepatitis groups for just women, or veterans, or Christians. Whatever your interests or identity, you can probably find a forum devoted specifically to that group. Of course, there are plenty of general forums, too, but at least you'll have the option. Maybe, you'll even consider joining several!

Cons of Internet Support Groups

It's Virtual. While anonymity is a benefit of the online forum, it's also one of its weaknesses. If you're like many others, you value personal interaction with people and you'll probably enjoy a higher quality of life if you get regular opportunities to meet with others.

No Oversight. Most support groups have an identified leader who is able to help guide the conversation and keep the conversation civil. While there are good moderated forums online, there are also many sites that have very little oversight and can quickly get out-of-hand. It's rarely helpful to participate in a forum where anything goes and people can say whatever they want or feel without regard to others.

No Affiliation. Many support groups have some affiliation, usually with a medical, community, or nonprofit organization, which helps to provide a level of credibility. These groups may follow a proven therapeutic model and have access to specially trained professionals. While virtual communities can have all this, too, it's likely that many don't.

Misinformation. Perhaps the greatest problem with Internet forums is the potential for misinformation. The above problems (anonymity, no oversight, and lack of affiliation) can easily lead to an environment where people can post all kinds of half-truths, misunderstandings, and flat out lies. While some forums have professional oversight, many have nothing that prevents someone from posting bad information. This puts a greater burden on you to choose a good forum with good qualities.

Ready to Join?
 
If you've made your choice, the next step is to find a good site and sign up. Here's a good place to start looking for Internet support groups. However, many people do both: participate in a regular group and an online site. No matter which you choose, here's help in finding the perfect support group.
 
If you've made your choice, the next step is to find a good site and sign up. Here's a good place to start looking for Internet support groups. However, many people do both: participate in a regular group and an online site. No matter which you choose, here's help in finding the perfect support group.
 
Suggested Reading
What Makes a Good Support Group?
How to Find the Perfect Support Group
Four Good Hepatitis Support Forums
 
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