

During the 20-plus years I’ve been involved in on-line communities (a/k/s “social media”), I’ve been involved in several kinds of “support” communities. Some were technical support, with a simple primary goal – solve customer problems at the lowest possible cost. Others have had fuzzier purposes. After a friend’s son was diagnosed with brain cancer, he and I became involved in on-line cancer support groups, whose intent is quite different. This crystallized for me when I joined another kind of medical support group recently, with the goal of doing some conversation analysis. The signup page asked me to identify myself as a patient, medical professional or former medical professional. I’m not a patient or a medical professional, but many, many years ago I was a paramedic, which gave me some familiarity with the illness in question, so I chose “former medical professional.” In response, I received an email that included this gem:
“Unfortunately, we have had some bad experiences with some who believed they were here to teach or lecture. I would like to make it clear that while we welcome you and your medical expertise as well as your input, we are not interested in a forum where questions are asked and the medical visitors are quick with a medical answer. Such a forum has a tendency to stifle input from those who need to express themselves the most. “
Fascinating – people who are quick to provide medical answers tend to stifle the conversation. This makes no sense in the context of technical support, but it makes perfect sense in crisis intervention. When people go through a trauma, it can be counter-productive to try to make things better. Okay, that probably sounds crazy, but the reality is that trying to “fix” what’s wrong often leaves people feeling unsupported even when it is the “right” answer. What people in crisis also need is a safe place to tell their story, which is very much what crisis intervention is about. ”Safe,” in this context, means that their story will be accepted as it is, with no criticism or quick fix. Trauma changes people; medicine doesn’t change them back. Instead, they need to figure out how to live with their illness, which quick fixes ignore.
So yes, it makes sense that in a support community whose primary purpose is human, not technical, support, the kind of response that is totally appropriate in a technical support community is wrong. Here’s the short version of what I believe this implies: “new” social media – Facebook, Twitter, blog comments – are lousy platforms for emotional support, because they are really not good for story-sharing, at least not the kind of sharing that people do in support communities for serious illnesses and other trauma. Web forums, mailing lists and Usenet (is Usenet still working? haven’t looked in a while) are much more appropriate. Twitter and Facebook are fine for sharing factual tidbits, pictures and videos and so forth, but not for holding conversations that really help people get to know each other in a way that is meaningful to the challenges of illness, etc. Facebook, Twitter, etc., are much more about digitally enabling your existing relationships, not creating new and deep ones.
The new social media also fail to offer the kind of desirable compartmentalization that a support community does. The default behavior is to post items in public. That doesn’t create a safe environment for telling your story, if only because many of those friends and acquaintances just can’t relate to your need for a supportive community. If the topic is my cancer (hypothetically, I’m not sick, thank heaven), I want to talk to other cancer victims and survivors, perhaps some medical professionals and allied health people… but not everybody I know. I may not want my illness to be a complete secret, but there are likely to be people who I’d rather not share it with, even though they are “friends” in social media.
The next time somebody talks to me about a “support” community, I’m going to be thinking, is this a community where people want to tell their stories to get a quick answer, or is is it a one where they mainly want be in a place where the others know what they’re experiencing.
Tags: community, illness, social media, support, trauma







