The internet has opened up a whole new avenue for peer support networks. Natasha Wallace reports on the benefits and pitfalls of going online to seek solace.
Shortly after attempting suicide, Genevieve Bailley* wrote a farewell letter to her friends who regularly hang out in the depressioNet (www.depressionet.com.au) chat room. The message saved her life.
"When I overdosed, I logged on and someone guessed what had happened, because I was so close to this person, and they talked me into going to hospital," says Bailley.
The 18-year-old psychology student has battled depression since she was 12 and, despite having seen several counsellors, feels the only people who really understand her are the online friends she has made during the past two years.
"It's like living down in Antarctica and not realising that there's anyone else in the world, and then finally discovering that there are people like you and you're not alone," she says.
"It was depressioNet that was keeping me alive ... I had no other support," says Bailley.
"If I had really bad insomnia and I couldn't sleep until four or five in the morning, I used to jump online and there would always be someone there to talk to."
Group therapy and peer support in cyberspace is a complex issue. Its benefits are obvious - helping people overcome emotional, social and geographical isolation (particularly if face-to-face counselling isn't an option), providing free access to professional advice and the latest research and allowing for candid, anonymous conversations between people with similar problems.
In Australia alone, there are thousands of dedicated self-help websites. Type "eating disorders support groups" into Google Australia, for example, and you get 5100 web links, "drug and alcohol addiction support groups" brings up 4450 and "sexual abuse support groups" a whopping 17,000.
But the vast majority of such websites act as an information referral service, with links to local support groups, research, case studies and information on treatment options. Many host bulletin board discussions, where people can post their thoughts and wait for a response, either from a peer or from a professional working in that particular field. Most allow users to publish their email address, usually under a pseudonym, and a short message, in an effort to bring people suffering the same problems together.
However, when it comes to chat rooms - which enable 24-hour, spontaneous, anonymous, peer-group support - it really is a jungle out there in cyberspace.
Government bodies, and indeed some NGOs, shy away from hosting chat rooms, fearing consumer-to-consumer advice may lead to potentially harmful misinformation. The problem can be overcome by having 24-hour moderators, who scan messages for their suitability before publication, but such chat rooms are pretty rare on the web, largely due to a fear of lawsuits.
Mitch Messer, chair of the Consumers Health Forum of Australia (www.chf.org.au), says the peak NGO consumer body recommends users avoid chat rooms that are not moderated by professionals. Likewise, the Federal Government's online health service, Healthinsite (www.healthinsite.gov.au).
"We, of course, recognise that some of them are not moderated ... and people going into these really need to know that and they shouldn't rely on information that they're given," Messer says. While neither the Consumers Health Forum nor HealthInsite actively promote chat rooms, Messer says they can be beneficial and cites depressioNet as a shining light in the online self-help world. "With some conditions there are no answers, but that doesn't mean that people don't have a need for support," he says.
DepressioNet, a not-for-profit site started two years ago by Leanne Pethick, is staffed around the clock by people trained in the prevention of suicide.
Pethick says a fear of consumer-to-consumer advice means the group is unable to get government funding. It was knocked back by the Federal Government's depression initiative beyondblue (www.beyondblue.org.au) which, ironically, lists the organisation on its website's links page.
But Pethick believes the mental health industry is beginning to recognise the benefits of online peer support. "Certainly we have received nothing but positive feedback from health-care professionals, whose patients have been members of the depressioNet forums, as well as many other leading health-care professionals who have always recognised the need for peer support in the healing process for many people with depression and related conditions," Pethick says.
Paul Kidd, editor of the magazine Positive Living, started his website OzPoz (www.ozpoz.org) in 1996 to support people living with HIV and AIDS. Kidd, who has been HIV positive for 17 years, says OzPoz has an over-representation of members from rural and regional areas.
"One of the most effective ways that OzPoz works is for people who are geographically or socially isolated," says Kidd.
"I've had messages from people who say, 'I've just come back from the doctor's and he just told me I'm HIV positive and I don't know what to do and I'm completely adrift'.
"That's where OzPoz really works because you instantly have access in quite an anonymous fashion - which is quite important because HIV is very heavily stigmatised - to a support network, and particularly at that moment when you have not had an opportunity to establish a real-world support network," he says.
The site is a "100 per cent HIV positive environment", he says.
"So you don't have to deal with any kind of judgementalism from people whose experience is different to us. So, for example, when we need to talk about things like safe sex and how we deal with rejections and disclosure, it makes it a lot easier to discuss," says Kidd.
He doesn't know of any HIV/AIDS chat rooms that are monitored 24 hours a day (neither is OzPoz).
"They're terrified of defamation ... If you host a message board, you're the publisher and you can get done for defamation."
Hogne Sandvik, a Norwegian doctor who conducted one of the world's first studies into interactivity on the net (Q&A support groups, email lists, news groups, chat rooms, etc), says HIV/AIDS is a subject that often attracts "charlatans" - which means people may be misled by so-called "experts".
He has mixed feelings on the benefits of chat rooms and other interactivity tools on the net. His research, in which he posed on the internet as an incontinent woman, "Molly Jones", shows that chat rooms provide a unique opportunity for contact with experts when sufferers are too embarrassed to go to a doctor or seek face-to-face counselling.
Molly received 32 responses within 24 hours of posting a message on the internet about her condition, says Sandvik.
"Taken together, these postings provided comprehensive, and correct, information about several treatment options for urinary incontinence," he says.
"Many women find it embarrassing to talk about incontinence to their family doctor and some may prefer to discuss it on the net. The possibility of meeting fellow sufferers on the net is also useful and Molly's experience indicates that a suitable news group is a good place to start."
But users must be wary, he says: "Forums without the support of professionals are at greater risk of being deceived by charlatans.
"I didn't find any examples of this in my incontinence study, but then incontinence isn't a condition that attracts charlatans, in contrast to cancer and AIDS.
"In fact, I think that a supportive environment can make you less critical and more susceptible to making harmful choices."
Sandvik cites an example of "harmful emotional support" at the news group (alt.suicide.holiday).
In 2000, a Norwegian male posted a message to the news group (groups.google.com/groups? oi=djq&selm=an_583449550), expressing his desire to find a suitable companion with which to commit suicide.
His message reads: "It's not just some impulsive decision.
"But, and this may sound a bit bizarre to some I guess, I would like to do this together with someone else ... I live in Norway, so it would be best if you live somewhere near -
by this I mean Northern Europe. I am willing to do some travelling/alternatively pay for your ticket to get here, if funds are tight ..."
Ten days later, he thanked the news group, announcing he had found a willing participant:
"I haven't really met any people in 'real life' before with the same attitude to suicide, so it was liberating to be here and read the posts," he said.
"Some of you might remember my post some days ago about a suicide partner, well now this wish has come true, and we are meeting tomorrow to have our biggest wish come true also.
"Hope I won't be able to respond to any replies ..."
Dozens of people wished him luck and a "safe passage" on his journey to "the other side". Others were abusive, shocked and disgusted by such open encouragement of suicide.
Just days later, he and an Austrian girl jumped together off a cliff to their deaths.
* Not her real name.
Touched by the net
Mykl Lozin, who has chronic fatigue syndrome (CFS), says he has largely withdrawn from society over the past 10 years, frustrated at a lack of understanding of his condition.
After suffering a mild stroke in October last year, the 43-year-old violinist moved in with his sister in country Victoria, as he is unable to walk far and suffers excruciating pain. His sister has internet access at home, which prompted Lozin to log on a couple of months ago and seek others grappling with CFS. He found an online support group (www.unlimitedweb.net.au/cgihtml/contact_list.html) that is linked to The ME/Chronic Fatigue Syndrome Society of Victoria (home.vicnet.net.au/~mecfs/about.html) and other state branches.
The society's website also has a Pen Friends link, where users can leave their email address, and hosts a chat room event each Sunday from 2-4pm.
Lozin says the contacts he has made while using the website service have changed his life.
"It has definitely opened doors for me to a whole new world. Most people with CFS are very housebound. It's not that we want to be, we hate it ... I was ostracised so much I moved away from the city and I lived a double life."
Lozin chats daily with other CFS sufferers he has met over the internet. After years of isolation, he says, he has finally found support and understanding.
"The internet has helped me because I've learnt that I'm not alone in the world," he says. "Everybody seemed to be suffering a very common thread within the disease.
"How it affected their lives, broken-down families, understanding relationships and the isolation and feeling like an outcast.
"People need communication and they have to understand that they're not alone in this."
Suitable, professional chat rooms tend to be hard to find. They are usually not-for-profit, low-profile outfits, run by dedicated volunteers. Begin by contacting a local association in the area in which you wish to seek help. For example, for alcohol addiction, contact Alcoholics Anonymous, or check its website, and ask for a list of local support groups and their email addresses. Most likely, they will be able to point you in the right direction.