• Quote of the Day
    "Don't let what you can't do interfere with what you can do."
    John Wooden, posted by David Baxter

David Baxter

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Online Support Groups: Effective Support in Your Pajamas
Friday, April 28th, 2006
by Deborah Gray

During one of our visits to California to see my family (when we still lived in Connecticut) my sister was talking about a couple she knew. She said to me, ?Oh, well you know Jerome, don?t you?? I said, ?Nooo,? after mentally running through the list of people I had met on visits. She said, ?Well, he knows you. From The Well? You play online games together??

?Oh, that Jerome,? I responded. ?Of course I know him. Nice guy.? Actually, despite knowing him for a few years, I had no idea what he looked like, although I could tell you what characters he played on our server in our online game. I think it?s possible that from 3,000 miles away I had hung out with Jerome as much as my sister had in person.

We often take for granted, after years of being on the Internet, how incredible it is to know someone you?ve never met in person. In the past it was possible to communicate with someone who you had never met face-to-face by phone or letter, but how would you meet them? How could you find others to share your interests? And obviously, neither of the aforementioned communication methods would work for a large group of people.

Until the Internet, peer support groups (as opposed to traditional support groups led by a mental health professional) were the only group self-help support available. They usually meet once a week or so in a community center of some kind. They?re often a grassroots organization started by someone with a need to talk to others with the same experience.

I know many people who don?t know where they would be today without those groups. However, there are barriers for other people that keep them from participating. It might be a physical issue: geographic distance for those who live in rural areas, being homebound or not having access to transportation. It could be difficult or impossible for someone, working parents or a caregiver for instance, to fit the group meeting into their schedule.

The barrier may be, for people with a mental illness, a legitimate fear of being seen attending a meeting. If a teacher is known to attend a meeting for people with depression, might it affect how he or she is perceived at work by staff and parents?

Lack of convenience and flexibility are also factors in keeping people from attending in-person support groups. For someone with depression, having the energy to consistently attend a meeting outside their home is extremely difficult. And in many cases for someone with a mental illness, the group needs to be constantly available, not just once a week or so.

The most insurmountable barrier to attending an in-person support group for some people is shyness. For some it?s just the prospect of meeting a new group of people that?s daunting, but for some it?s difficult, if not impossible, to talk to other people face-to-face about very personal issues. Many would prefer to just sit and listen till they?re comfortable with these strangers, but in some groups everyone is expected to participate.

These barriers don?t exist when one has access to the Internet and attends an online peer support group, or groups. Geographic distance is only an abstract concept and you never have to worry about bad weather when you?re getting there. It is always possible to find an occupied support chat somewhere online if you need to talk to someone right away. The group meeting times are flexible and you can attend in your pajamas.

It?s almost always possible to find a mode of communication online with support peers that suits you, since there are so many to choose from. There are email lists and bulletin boards, which allow for thoughtful, deliberate posting. There?s real-time chat, which many people prefer for the immediacy and sense that they are in a room with other people. On my forum members can also have their own blog or online journal, in which they post their thoughts and feelings. Other members can comment on the often intensely personal entries.

The types of interactions you?ll find in an online peer support group are pretty much the same as a face-to-face support group. Some people are seeking information about a disorder or its treatment, many people are giving or receiving emotional support and encouragement and some are venting frustrations about their condition or how it affects their life. Many people are just happy to talk to others who understand what they?re going through.

Although online peer-to-peer support groups are not perfect (I?ll discuss some of the drawbacks in my next blog) they do allow many people to connect with others to share thoughts and feelings about mental illness who would not otherwise do so. Although running a forum for people with depression that is so busy (200-300 posts per day) can be very tiring and time-consuming, I know that it?s filling a need that could not be filled for many members in the real world.
 

David Baxter

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What You Should Know About Online Support Groups

What You Should Know About Online Support Groups
Monday, May 8th, 2006
by Deborah Gray

As I posted in my last blog, I believe that online support groups can be a real boon to someone with depression who is seeking peer support. They, by their very nature, overcome some of the barriers that keep people from seeking peer support offline, in the real world. However, there are still some barriers to overcome and caveats to keep in mind when using online support forums.

Privacy Issues
We have an expectation of privacy in a face-to-face support group. This is generally justified, and it isn?t easy for someone outside the group, like your employer for instance, to find out if you attended a group at any point, and there are rarely, if ever, any public transcripts of groups. However, this is not necessarily the case online.

Newsgroups, forum postings and even mailing lists are archived online, almost without exception. This can be positive in some situations, but when it comes to privacy, it poses a risk for the person who has posted something about their depression that they may regret when they realize an employer or potential employer, an opponent in a divorce or custody battle or anyone else who wants to dig up dirt on them has access to their writing with merely a diligent search. In most cases, this problem can be avoided by using a Yahoo or Hotmail email address when registering and choosing a username both for the email and for the forum that has no relation to their real name (?CalMom? instead of ?DebGray?), for instance.

Communication Failures
Lack of verbal and visual cues are often a detrimental aspect of virtual communication. Almost certainly, what causes problems most frequently is the inability to convey teasing or facetiousness adequately, other than adding an  emoticon or ?lol? to a written comment. Most depressives are very sensitive to real or imagined criticism. I have seen some epic battles start when someone misunderstood a written comment that would have been clearly understood in person or over the phone.

As long as you are communicating online with text-based methods, this deficiency will continue to be problematic. Just be aware of these potential problems, either as the person who is transmitting or the one who is receiving the message. Don?t jump to any conclusions about someone?s intended meaning if you are offended, and always to be ready to clarify your meaning if someone seems to have been offended by something you said. Do not take it personally in either case if there is a mis-communication. Step back and cool down.

Unfamiliarity with the Internet or Online Communities
Most of us are familiar with protocol and rules for face-to-face support groups, but even for many people who are Internet-savvy, an online community is a new experience. Fortunately most groups have posted a list of guidelines and/or a FAQ (Frequently Asked Questions document) that will tell you what is and is not acceptable in the group. If the group does not have this type of documentation posted, ask the administrator if there is anything you should know about etiquette.

Poorly-Run Groups
If an online support group is poorly run, it can be worse than having no group available at all. Lack of moderation is detrimental to any online community, but especially to a mental health support community.

Without an administrator or team of moderators keeping an eye on things and/or monitor messages before they are released, thoughtful discussion can be dominated by a loudmouth (or group of loudmouths), by flame wars or by personal agendas. I have seen a newsgroup completely destroyed essentially due to its lack of moderation. A newsgroup set up to discuss suicidal thoughts was taken over by a group of people (or one person ? it?s hard to tell online) who told everyone who made a suicidal post that they were going straight to hell. Unfortunately, there was no moderator screening the posts. Needless to say, in a short time the newsgroup was abandoned.

If you are looking for an online support group, you will probably have the best luck with one that has clear guidelines against disruptive behavior and a moderating team that is active.

Hoaxes
Anonymity, for many people, is one of the benefits that the Internet offers that allows them to be comfortable talking about their depression. Unfortunately, that same anonymity can be exploited and gives someone the ability, if they so choose, to perpetrate a hoax. The worst type of hoax that has been perpetrated on my depression support forum is the suicide hoax. We will see a post from someone who claims to be the roommate, parent, friend or even landlord of a member (rarely a long-term member). Their post says they?re sorry to have to tell us that the member has committed suicide. Then they say they either knew that the member visited the forum or were browsing through the person?s computer and just happened to come upon it.

This ruse allows the perpetrator of the hoax to see all the nice things other members say about them (as a member) and bask in the sympathy of other members regarding their supposed loss (as the member?s friend/relative). It?s sad that someone needs this kind of attention, and unfortunately this can be devastating for the forum members. In some cases it can even trigger suicidal ideation in some members.

Sadly, the best way to handle this is to take everything on an online support group with a grain of salt. Along those lines?

Take All Advice with a Grain of Salt
Remember that the advice you read in an online support group most of the time is not from a medical professional. Before taking advice about treatment or medication especially, check it out with your doctor. Don?t blindly follow any advice you find online ? do your research. Remember that some people online do have agendas. They may be selling something or in rare cases, are simply malicious. It?s disappointing to have to maintain your cynicism with a group of people who for the most part have your best interest at heart, but your well-being is paramount. Online support groups are a wonderful resource, as long as they?re used wisely.
 

Halo

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I also thought that it was very interesting....food for thought.

Thanks Dr. B. for the posts.
Nancy
 

ladylore

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Fantistic article because online support is really just as important as real life support. Thanks
 

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