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Important Considerations for Online Support Groups
by M.E. Peychers, M.A.
If members with a serious psychiatric condition try to keep it hidden, an online support group may be harmed, even destroyed. If the problem is declared, sometimes it can be defused, allowing the members to remain within the group.
Severe depression
This is a particular risk for people suffering from chronic illnesses, or a lack of self-esteem. (Yapko 1997). Groups for bodily health problems, such as arthritis or acne, cannot be expected to advise on acute depression, panic attacks, or obsessive disorders, yet this happens.
Demands are made for more than any non-psychiatric group can provide. It's good to be sympathetic and supportive, but encouragement should be aimed at securing more appropriate help.
If people say, "I can't live like this," they should be taken at their word, not babied. They should be helped to find treatment to put a stop to that anguish. They should not be urged to go on and on writing about it.
One man announced that he had decided to gas himself. Diagnosed with a disfiguring disease, he couldn't live with a changed appearance. In fact, a doctor had said that his condition should be controllable with one painless annual treatment.
Reminded of this, the man apologized for having upset people. He admitted that he was struggling psychologically and promised to do his best not to "do anything stupid."
In or out of groups, we all have our own issues that we bring to the table and want to discuss. Even so, something one person wants to reveal might be deeply distressing for others.
If you feel that inappropriate messages are making your group unpleasant and stressful, please report it. The board-owner might be equally unhappy with the situation and be keen to get things back on topic.
Munchausen syndrome by internet
In this condition, someone dishonestly claims to be suffering from serious illnesses, particularly potentially fatal ones such as cancer. As Dr. Marc Feldman has explained in his excellent articles, these people can cause great distress within groups, even destroying them (Feldman 2000, 2004).
One woman's posting history began with an appeal describing herself as helpless and suicidal. Members rushed forward with advice, begging her not to lose hope.
In her messages, desperation and agony alternated with a certainty that members could solve her problems. Although they tried very hard, nothing brought any relief.
Then she mentioned that the top specialist at a medical college had said she was making it all up for attention. Two people wrote privately and received bright, excited replies nothing like the "normal" voice of the woman so ill she could hardly type.
Pressed to see a counselor, she suddenly stopped writing. No one criticized her, or ever mentioned her again. Everyone understood that she was seriously ill.
Online Support for OCD/BDD
People who are obsessive worriers may wrongly convince themselves that they have a particular illness. The next step may be joining a support group, hoping for confirmation of their self-diagnosis.
A board can easily be overwhelmed by one person firing off hundreds of messages. At first, other members try to help, but frustration sets in when all of their advice is ignored.
The whole group needs to understand that the poster isn't "being difficult." The nature of OCD is that someone panics over minor issues and has worries that balloon out of proportion (Hyman & Pedrick 1999).
If a new member shows signs of OCD, don't be drawn into specifics about the group's shared illness. First find out if there has been a definite diagnosis from a doctor. Posts should not be answered without that diagnosis.
A teenager, who described herself as grotesquely ugly, posted obsessively about scars and said she would kill herself. Severe depression was obvious, but BDD was only confirmed when her photos revealed an attractive girl (Phillips 1986).
All advice on medication and counseling was rejected. When she joined a second group, someone posted a link to her messages on the first board. It was agreed that she had already received excellent advice, and should follow it.
A man with severe behavioral problems, including OCD and anger management issues, bombarded group members with emails demanding advice. One person was asked the same question for three years.
People who stopped replying were insulted and threatened. It came as a relief when moderators told them he did this with many others and it was "nothing personal." A policy of only answering questions in public might have prevented this situation.
One of the hardest things to cope with is being targeted by an angry and abusive stranger. In the unlikely event that this happens to you, ask the board-owner to help.
If there is any suspicion of stalking, contact the police (Jaishankar & Sankary 2005). Don't try to reason with unreasonable people. Online support groups should be safe for members.
References:
Feldman, M.D., (2000): Munchausen by Internet: detecting factitious illness and crisis on the Internet. Southern Journal of Medicine, 93, 669-672
Feldman, M.D., (2004): Playing Sick?: Untangling the web of Munchausen syndrome, Munchausen by proxy, malingering, and factitious disorder. New York, Brunner-Routledge
Hyman, B.M., Pedrick, C., (1999): The OCD Workbook: Your Guide to Breaking Free from Obsessive-Compulsive Disorder. Oakland, New Harbinger
Jaishankar, K., Sankary, V.U., (2005) Cyber Stalking: A Global Menace in the Information Super Highway. The Online Quarterly Review of Crime, Ethics and Social Philosophy (ERCES) Vol 2, Issue 3
Phillips, K.A., (1986) The Broken Mirror: Understanding and Treating Body Dysmorphic Disorder. Oxford, Oxford University Press
Yapko, M.D., (1997): Breaking the Patterns of Depression. New York, Doubleday
Revised 3/15/10 by Marlene M. Maheu, Ph.D.
If other moderators or respondents come across this comment I would be interested in their feedback.
A moderator walks a fine line and tries to not only facilitate the needs and purpose of the group but of its' policies. As they work to meet the demand of running an online group, they can feel overwhelmed, ignored, and taken for granted. For example, moderators that not only give their time making sure posts and memberships are approved but offer support by responding to members posts for a sense of belonging and mutual support when interacting with members of their group as a group member themselves.
Something that is almost never mentioned in the study of online support groups is how Moderators themselves can become the center of a silent campaign of rejection by members of their own group.
Moderators can easily see when some members posts go unanswered or ignored while other posters are consistently responded to. This kind of list favortism is not unlike what one might experience in a real time group situations at school, in the office or in some other group dynamic.
What it can mean for this person is a general or personal feeling of rejection. It's likely that the ignored member would stop posting or leave a group if they don't feel a sense of connectedness with other members. This same behavior can occur and be directed at moderators themselves. When a moderator also contributes primarily as a member, seperate from their moderator status and they receive little if any responses, this can make a moderator feel unappreciated and isolated.
It is thought, perhaps, that members of online groups view moderators as being intimidating even when there is evidence to the contrary the moderator of a group displays an even tone, friendliness, consistency and support.
Other evidence might show that more popular members of a list hold sway over the tone and direction of postings between members and regularly respond to selective members while consistently ignoring posts or declining to answer a certain member.
What if any would be their bias? Some members may not be as prolific or robust in their writing styles and will not endure if they have not received responses from anyone on the list. But a moderator doesn't have the luxury of leaving a list, one they may have built from scratch as just any other member might.
Online list or group behavior that appears to be duplicating certain real time environments can cause a person feelings of dejection and frustration at being devalued by their fellow online group members with seemingly no reason or explanation as to why and can be extremely wounding to an individual who uses online groups for vital support or a sense of belonging within a community.