What You Need to Know Before Joining an Online Support Group
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.
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.
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.
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.
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.
Deborah Gray wrote about depression as a Patient Expert for HealthCentral. She lived with undiagnosed clinical depression, both major episodes and dysthymia, from childhood through young adulthood. She was finally diagnosed at age 27, and since that time, her depression has been successfully managed with medication and psychotherapy.