REINVENTING THE SUPPORT GROUP

For WalkersWeb, the Internet is an important path to mental health

Many people who call themselves “Walkers” refer to their online community as a family, but it’s clear they’ve found something much more substantial. “Spouses and family and friends ‘try’ to understand,” wrote one Walker, “but they just can't know how it feels to be ‘us’. Walkers is an alliance of friends who can truly understand and comfort when no one else can.”

They are participants in a unique approach to mental health, one that relies exclusively on the Internet to provide support for people afflicted by mood disorders, such as clinical depression and bipolar disorder, also known as manic depression. Judging by the messages they post, and the fact that more than14,000 of them are registered to participate in online discussions at WalkersWeb, these Walkers in Darkness have found a formula that both reinforces and transcends traditional forms of therapy.

“This is not a normal chat room,” comments another Walker. “It is people helping people. We are students, mothers, nurses, engineers, we are from every walk of life with one common bond. We see words, no faces, but we trust what we see, because we all feel the same way, in one way or another.”

The strength of their words has unquestionably helped elevate the founders of this online community, Walkers in Darkness, Inc. This once relatively obscure support group is now a reputable non-profit whose presence in the mental health field is difficult to overlook.

“What started out as just a bunch of people sending email to each other has become an entity with a mission and the infrastructure to meet the mission,” explains Mark Oberg, president of Walkers in Darkness, Inc. “I don't know of any other mental health organization that has made the transition from Internet to organization. Most of them started out in the non-virtual world and remain there, even though they have some sort of web presence these days. We are unique in that we are 100% Internet based. Even our Board of Directors holds its discussions in email and meets in a chat room.”

Trumping their own experiment

Walkers in Darkness began as a bold experiment ten years ago when David Harmon, who suffers from depression, started an email list for people who wanted to discuss mood disorders, treatment and other information. It was one of the first mental health discussion groups on the Internet, since few people really knew what email was at the time. For those who had access to it, email provided an immediacy that was very appealing, given the dearth of in-person support groups and the general reluctance of people with mood disorders to attend the ones that did exist. The concept took off, and as the number of subscribers grew over the years – it now stands at 700 – Walkers in Darkness offered specialized lists, including one for those who were further along in recovery.

While maintaining these lists and moderating the discussions remain the organization’s primary activity, Walkers in Darkness essentially trumped its own efforts when it launched WalkersWeb three years ago. The organization received a donation from O’Reilly & Associates for a copy of WebBoard 4.0 powered by an Oracle 8i database, and once Oberg organized a dozen online forums, he witnessed a dramatic leap in participation. Unlike the email lists, though, there is tremendous ebb and flow among members of the WalkersWeb community.

“There are people who I would consider regulars, but even those folks come and go as their needs for what we offer change,” explains Oberg, who moderates the forums on a daily basis. “The top ranked forum user has over 3,000 logins. We have a constant stream of new users. Out of 100-150 daily logins, 10% are new.”

And, for most of them, logging on is not a casual thing. “Where else can we go for support 24/7?” one Walker asks, rhetorically. “Without my Walkers family, I can honestly say I would not be alive today. Yes, that sounds melodramatic, but many times I have come here when I am teetering on that edge – staring death in the face. At those times I am in so much pain that I can't, I won't contact my team of professionals. But here I can find friends who have been in the depths of despair. They do their best and somehow manage to convince me to keep on fighting or at least to reach out for the help I deserve.”

Cutting across barriers

The sentiments of many Walkers underscore the organization’s main message: They may be walking in darkness, but they are certainly not alone. Mood disorders can be isolating and stigmatizing because “family members or friends who have never been through it will just sometimes ask you to snap out of it,” one Walker notes. That’s a ludicrous notion for anyone with these illnesses. WalkersWeb provides a place where people don't sympathize but empathize, a place they can go when they need to vent or just be distracted. “I go to therapy four times a week, but still feel best after coming here,” says a Walker.

And along with the receiving, there is plenty of giving. “To me, it is really amazing when you believe yourself to be so useless and worthless to discover you can actually help someone feel better about themselves,” another Walker offers. “And it might be selfish, but somehow that makes me feel better about myself too.”

The words they post also cut across traditional barriers. The age range of Walkers, for one thing, is quite expansive. While most seem to fall between the ages 20 and 50, some are in their 60s and others are as young as 13 – though Oberg admits that Walkers in Darkness does not reach as many teenagers as he’d like. And gender? “The initial anonymity makes it much easier to open up,” one Walker explains. “I am female, but I think it's easier, especially for the men, to come here and vent, given the way our society is.”

WalkersWeb also attracts some family members looking for information, as well as a few medical professionals. While Walkers in Darkness doesn’t maintain its own fact-filled pages, the site acts as an information repository, providing a long list of links to existing web sites that deal with treatment, medications and the latest mental health news. The links to medications alone is impressive. More than 50 different psychiatric medications listed – antidepressants and mood stabilizers among them – each has a link to a page that explains the medication in clinical detail. “I’ve found out more information here about my medication and my illness than from my doctors,” one Walker admits.

Walkers also educate themselves, as they learn what works and what doesn’t from those who are further along in recovery. As Oberg points out, “Many people do come for information on medications and treatments they are receiving, if only to get some validation that other people are using the same meds and getting good results. Some people use the forums as a kind of reality check and a way to get feedback before they approach their doctors or therapists about a topic.”

Striving for the same thing

WalkersWeb is also a place where Walkers can simply go to be expressive. One of the online conferences invites visitors to post poems and short stories, which often deal with powerful images. And recently, the group initiated a way for visitors to create their own home pages. “I get the feeling that creating a page is kind of a cathartic exercise for many of the people who make one,” Oberg remarks. “The content of some of them is very personal.”

What Oberg has seen in the past three years is very encouraging, given that at least half of the people suffering from mood disorders do not get proper treatment. Although these illnesses do not have a ‘cure’, he points out, treatment can make a world of difference. “We are able to reach a lot more people than we ever have,” he says. “My sense of things is that online support is an area that will see a lot of growth. Many of the organizations that should be doing more on the Net have yet to figure that out, but they will have to face that challenge soon.”

Those who have joined the WalkersWeb community are thankful to have this much. “I came to Walkers in September of 1998,” one of them writes. “I find this ‘place’ to be safe, comforting, somewhere where I can come to in times of sadness as well as times of joy. Where I can share in my victories no matter how small, because even the smallest can mean the world to us. This room is home, I have a huge family and would not change anything for the world. We struggle, yet strive for the same thing... RECOVERY.”

For many, WalkersWeb is an important part of that process.

© 2000 O’Reilly & Associates