Internet Support Groups - How to Find Yourself a Happy Home Online

by M. E. Peychers, M.A.

On the Internet, the number of support groups dedicated to specific diseases is expanding (White & Madara, 2002). This is only likely to accelerate, as more specialised groups split off from the larger sites. Although choice is restricted for people looking for help with rare diseases, anyone with a common condition can expect to choose from an ever-widening range of competing groups (Beder, 2005; Silver, 2004).

When making that decision, the most important thing is to get the best possible match between your expectations and what a particular site can offer.

Here are a few very basic pointers:

  • If you're hoping for easy access to professional advice, a patient self-help group might prove to be a great disappointment.
  • If you only want standard medical advice about best current treatments, doctors, and hospitals, steer clear of a group that leans towards alternative therapies.
  • If you're keen to fund-raise for targeted research, try to find a group that will value your energy and enthusiasm.
  • If you yearn for new friends who will lift you in the bad times, laugh at your jokes, and celebrate your little victories, you will never be happy in a group dedicated to scientific discussions.

Doesn't that seem too obvious to be worth saying? Well, a lot of disputes are triggered by resentment over people who join a group that plainly doesn't meet their needs, but who insist on remaining and being very loudly unhappy!

Before joining a group, consider spending a few hours looking back through the group's archives. That should give you a good feel for the way members are treated. Then ask yourself:

  • Is the group generally happy and supportive? Does it give off a good vibe? Are newcomers welcomed warmly, or snapped at for asking boring 'newbie' questions?
  • Is there an in-group or a guru figure dominating all discussion?
  • Does the site appear to be biased? Does it fit with information supplied by reputable medical sources?
  • Are they trying to sell you something? Is the site promoting a product line, or linked to a treatment provider?
  • Is anyone criticising the quality of information provided by the group? Or challenging the integrity of the group itself?
  • Is there a high turn-over of members? If yes, can you see any obvious and worrying reason for this?
  • Do departing members sound angry or disillusioned?
  • If someone takes offence, does the list-owner or a moderator step in quickly to calm things down?
  • Do you feel that the members are being 'babied' emotionally? Would you be happier with a more impersonal approach?
  • If a member makes off-color jokes or tries to bring sexual innuendo into the group, do you approve of the way the issue is handled? (Maheu & Subotnik, 2001)
  • Do most of the members seem the kind of people you'd be happy chatting with?

If the signs aren't promising, it's best to keep searching. If the group sounds right, then dive in and make yourself at home!

References:
 
Beder, J. (2005): Cybersolace: Technology Built on Emotion. Social Work, Vol. 50 Issue 4, 355-358
 
Maheu, M.M., Subotnik, R.B ., (2001): Infidelity on the Internet: Virtual Relationships and Real Betrayal. Naperville, Sourcebooks, Inc.
 
Silver, M. (2004): E-Comfort, Online Help. U.S. News & World Report, 4/5/2004, Vol. 136 Issue 11, 64
 
White, B.J., Madara, E.J., Editors (2002): The Self-Help Group Sourcebook: Your Guide to Community & Online Support Groups. Denville, American Self-Help Group Clearinghouse

10/20/2006

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