Internet Health Support Groups
Coping With "Problem Posters"
by M.E. Peychers, M.A.
The internet is a great place to look for help with problems. Family and friends can advise from their own experiences, but that's a small pool compared with the ocean of advice on the internet. With a username, you can say things in front of thousands of strangers, yet still protect your privacy.
Many of the health support groups do have thousands of members. As a general rule, the bigger the group, the greater your chances of finding the information you're looking for. Unfortunately, the larger groups tend to attract 'problem posters'. That means people who create difficulties for others, whether they mean to or not.
Groups dealing with issues that are mentally or physically painful are often highly-charged with emotion. People who write in with their worries may be very sensitive and easily upset. At the same time, other members may be naturally abrasive and have no idea that their words are causing distress. In most cases, everyone gets along, with a little goodwill. The real problems start when the goodwill is absent.
An internet group is like any other gathering of people: good behaviour keeps things pleasant, but aggression and dishonesty spoil the atmosphere. When things go badly wrong, members may be insulted, attacked, robbed, even stalked. That is the last thing you would expect from something set up to assist people who are ill, but it happens.
It is possible to belong to an online group and never see any sign of trouble. That is more likely if you just dip in and out for information. The more fully you want to participate, the higher your chances of meeting "problem posters." To get the maximum benefit at minimum risk, it helps to know the kind of hazards most likely to crop up. Avoiding them will help you to keep safe.
People join health support groups for many different reasons. Some want more information than their doctor provides, especially about new treatments. Some want practical advice on coping with symptoms. Others mainly want contact with people who share the same problem and know what they're going through. This is especially important for the newly-diagnosed and for incurable conditions. Knowing that someone will respond with kind words, or even a cyber hug, can mean so much.
The difficulty is that some of your fellow members may be looking for very different kinds of support. Amongst the warmly caring people, there might be some who are dishonest, destructive, or even deranged - just as in real life. If you don't want to get caught up in their schemes or dramas, here is a guide to some of the people and situations best avoided:
Health groups are often targeted by dubious people, more interested in helping themselves than the members. These are the types you are most likely to come across:
- Vendors and sales reps hang around many boards. It is common for them to lie about their products, and who they are.
- Experts posting in online groups may have mixed motives for being there. Sometimes the help they provide isn't worth as much as it seems.
- Wanna-be professionals, such as untrained counsellors or life coaches, often use health groups as a step up the career ladder. Building a list of potential clients is one common aim. Without relevant training, these people may do more harm than good.
Computer games don't always come packaged in boxes or on disks. You might be surprised at the ways people can use their computers to play with the minds, or the emotions, of strangers. Your group might be hosting people whose real aim is to toy with the genuine members, including:
- Trolls, who stage games across the internet for their own bizarre kind of fun. Some trolls are playful, but most are ultimately disruptive.
- Hoaxers, playing mean tricks on genuine people.
- Drama queens choosing your group as the stage for their performances.
Groups set up for one particular illness or condition will naturally include members who also happen to have additional problems. Hidden psychiatric conditions may seriously affect other members, or even damage the whole group. Major complicating factors include:
- Severe depression, which can lead to a group becoming unbalanced, with talk of suicide as a desirable option.
- Munchausen syndrome by internet, where people milk a group for sympathy, particularly by pretending to have a fatal illness.
- Obsessive compulsive disorder and body dysmorphic disorder, where no amount of reassurance can ever be enough.
For a fuller discussion of each of these groups, please read on.
Beder, J. (2005): Cybersolace: Technology Built on Emotion. Social Work, Vol. 50 Issue 4, 355-358
Rich, P., (1999) Self Help and Psychotherapy: A Layman's Guide
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
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