The Anti-Drama Queen
I used to participate on a lot of different email lists. They were mostly support groups of various sorts.
Online support groups tend to be a lot of drama. They are typically grass roots type things where the people who have X issue get together to share their misery and cry on each other's shoulders.
Health lists tend to be more drama than average because they tend to be full of people who are very sick or are caring for someone very sick. So you have a bunch of extremely miserable, scared, desperate people looking for miracles or merely to vent.
These tend to not be very productive environments.
Cystic Fibrosis is so deadly that one support list I joined for the condition boiled down to a prayer request type thing. "My child is facing X horrible surgery. Please pray for us." because doctors can't fix it and everyone is terrified, especially if it's a child.
I have moderator experience and things changed after I joined.
When left to their own devices, groups tend to revolve around a few popular people and their opinions, opinions about X tend to be either for or against it and groups try to determine "THE BEST answer." This is generally not productive.
My idea of a good support group is that if you get ten replies to your question, you should have at least nine different unique pieces of information. If you have one popular person speak and five jump up to agree and five jump up to shout that person down, you need to try to put a stop to that.
The way you get the good result: You encourage people to tell their story a la "This was OUR experience with that surgery." You actively give push back against the group deciding there is ONE and ONLY ONE right and good answer.
I actively discourage people from doing what people tend to do to me -- or did when I was younger and still figuring out how to be me online: Being very vocal about agreeing with me or being very vocal about disagreeing with me.
I don't want it to be a popularity contest. I don't want it to be about people rushing to curry favor with me because of people wanting my approval or something. I don't want it to be about how I tend to be controversial.
I want everyone in the group to have equal ability to voice their concerns, tell their story, give their opinion without it being drama. I prefer to be the Anti-Drama Queen if at all possible.
So with my presence on list, that began to happen. Instead of saying "My child is facing X surgery, please pray for us." people began saying "My child is facing X surgery. Have you or your child had this surgery? What was your experience? Any pros or cons? Anything you would like to warn people about? Do you regret it? Are you happy with it?"
And then people would tell their story: "We had that surgery. This is how it went for us. This is what life has been like since then."
So the list became a calmer space. People could get meaningful, useful info to HELP them with their problem rather than just hand-wring about how scared they were and how hopeless things were.
But I wasn't a moderator of the list. I was just a member. My influence on the list made me a target of some of the longstanding members who felt I was stealing their thunder, etc. I eventually left because I was too much of a target and I felt some of the culture I had fostered would linger in my wake and that was probably the least worst answer, overall.
If you own a list, you have more power to enforce such expectations. If you are just a member, it's problematic to be the one setting the expectations because you simply know more than other people.
But online forums served me well at one time and played a role in my healing journey. And I do know some things that work well.
If you wanted to work on a particular issue -- say water poisoning in your community a la my last post -- it might be more effective to design an online forum differently. Maybe invite community leaders of some sort to pool their knowledge and experience instead of just a support group for people suffering from their water supply being compromised.
Say, create an invitation-only list for Native healers to share their knowledge of how to treat metal poisoning or an invitation-only list for Tribal leaders to share their knowledge of how to access funding for infrastructure, what kind of infrastructure works well on the Reservation instead of just copying Western-style infrastructure, etc.
That's hypothetical. I don't know exactly what would work and it's possible that invitation-only would give people a false sense of security and lead to problems.
Even if you only tell ONE person via a private email exchange, assume it can and probably will be forwarded to someone. Don't say stuff you wouldn't be okay standing by if it was on the front page of your local paper and your mother-in-law or worst enemy read it.
I do know I love getting the support I need via internet and the internet has been a big deal for making my life work as someone with a serious medical condition. But how a group is designed and managed can make a night-and-day difference between "Some constant train wreck full of drama and bad info" and "Some oasis of useful info where stressed people start to relax and breath more easily."
This goes double for health topics. They tend to be touchy and if you want them to be productive, you need to be very thoughtful about what kinds of conversations you are looking to foster in this space.
Online support groups tend to be a lot of drama. They are typically grass roots type things where the people who have X issue get together to share their misery and cry on each other's shoulders.
Health lists tend to be more drama than average because they tend to be full of people who are very sick or are caring for someone very sick. So you have a bunch of extremely miserable, scared, desperate people looking for miracles or merely to vent.
These tend to not be very productive environments.
Cystic Fibrosis is so deadly that one support list I joined for the condition boiled down to a prayer request type thing. "My child is facing X horrible surgery. Please pray for us." because doctors can't fix it and everyone is terrified, especially if it's a child.
I have moderator experience and things changed after I joined.
When left to their own devices, groups tend to revolve around a few popular people and their opinions, opinions about X tend to be either for or against it and groups try to determine "THE BEST answer." This is generally not productive.
My idea of a good support group is that if you get ten replies to your question, you should have at least nine different unique pieces of information. If you have one popular person speak and five jump up to agree and five jump up to shout that person down, you need to try to put a stop to that.
The way you get the good result: You encourage people to tell their story a la "This was OUR experience with that surgery." You actively give push back against the group deciding there is ONE and ONLY ONE right and good answer.
I actively discourage people from doing what people tend to do to me -- or did when I was younger and still figuring out how to be me online: Being very vocal about agreeing with me or being very vocal about disagreeing with me.
I don't want it to be a popularity contest. I don't want it to be about people rushing to curry favor with me because of people wanting my approval or something. I don't want it to be about how I tend to be controversial.
I want everyone in the group to have equal ability to voice their concerns, tell their story, give their opinion without it being drama. I prefer to be the Anti-Drama Queen if at all possible.
So with my presence on list, that began to happen. Instead of saying "My child is facing X surgery, please pray for us." people began saying "My child is facing X surgery. Have you or your child had this surgery? What was your experience? Any pros or cons? Anything you would like to warn people about? Do you regret it? Are you happy with it?"
And then people would tell their story: "We had that surgery. This is how it went for us. This is what life has been like since then."
So the list became a calmer space. People could get meaningful, useful info to HELP them with their problem rather than just hand-wring about how scared they were and how hopeless things were.
But I wasn't a moderator of the list. I was just a member. My influence on the list made me a target of some of the longstanding members who felt I was stealing their thunder, etc. I eventually left because I was too much of a target and I felt some of the culture I had fostered would linger in my wake and that was probably the least worst answer, overall.
If you own a list, you have more power to enforce such expectations. If you are just a member, it's problematic to be the one setting the expectations because you simply know more than other people.
But online forums served me well at one time and played a role in my healing journey. And I do know some things that work well.
If you wanted to work on a particular issue -- say water poisoning in your community a la my last post -- it might be more effective to design an online forum differently. Maybe invite community leaders of some sort to pool their knowledge and experience instead of just a support group for people suffering from their water supply being compromised.
Say, create an invitation-only list for Native healers to share their knowledge of how to treat metal poisoning or an invitation-only list for Tribal leaders to share their knowledge of how to access funding for infrastructure, what kind of infrastructure works well on the Reservation instead of just copying Western-style infrastructure, etc.
That's hypothetical. I don't know exactly what would work and it's possible that invitation-only would give people a false sense of security and lead to problems.
Even if you only tell ONE person via a private email exchange, assume it can and probably will be forwarded to someone. Don't say stuff you wouldn't be okay standing by if it was on the front page of your local paper and your mother-in-law or worst enemy read it.
I do know I love getting the support I need via internet and the internet has been a big deal for making my life work as someone with a serious medical condition. But how a group is designed and managed can make a night-and-day difference between "Some constant train wreck full of drama and bad info" and "Some oasis of useful info where stressed people start to relax and breath more easily."
This goes double for health topics. They tend to be touchy and if you want them to be productive, you need to be very thoughtful about what kinds of conversations you are looking to foster in this space.
