| HN Mirror

Thank you.

I have a form of cystic fibrosis, so a chronic fatigue group is unlikely to serve me well. Though I've "joined" and will keep my eye out for good ideas.

Many years ago, I joined an email list for parents of people with CF (yes, I also have a child with CF) and when I joined it was mostly prayer requests: "My child is facing X surgery. Please pray for us." and then outpourings of sympathy because people were so paralyzed with fear (because CF is really deadly and doctors can't fix it).

Under my influence as just a member, things gradually morphed into something more like "My child is facing X surgery. Have you or your loved one with CF had this surgery? Any pros or cons I should be aware of? What were your experiences?" and it was vastly better.

I managed to get this group to follow the principle that if you reply, you should tell your story and add new info and absolutely not get mired in the usual internet forum pattern of everyone arguing either for or against X. So if you had ten replies, you had about eight or so different personal stories and you could glean new and useful information of some sort from most of the replies without people competing over some sort of nonsense.

But the fact that I was the driving force behind that change helped make it really problematic for me to participate at all. Old timers who wanted to be the center of attention were jealous of me. I didn't want to be the center of attention and didn't yet know how to really successfully pull that off and being the person who had orchestrated those changes also made it very problematic that I had an explicit goal to not become some local "celebrity" and have everything revolve around me.

So I have firsthand experience with what works well for a health discussion group, I just don't know how to attract people to a health discussion group or how to position one from the get go as "We are here to talk in this way about health stuff rather than the usual BS for how online support groups usually work."

Most online support groups, whether health-related or not, are environments where it's really hard to talk about what actually works for fear of "blaming the victim" because, inevitably, some of the people with the worst problems are people who are their own worst enemy and it's never acceptable to in any way suggest or even imply that "maybe you should try not doing X." And that piece is something I don't have a solution for.

Health groups suffer the additional burden that pretty much everyone there is cranky and short tempered and feels awful. It's a pot constantly on the verge of boiling over at the slightest excuse and it's really hard to manage that element of it in a way that is fair and humane for all parties.

Plus there is inevitably a few people who are largely housebound and are trying to get their ego needs and social needs and so forth met through being "important" in some way to the group and these people inevitably need everyone to defer to their wisdom and agree with their ideas and they are often talented at gaining allies and so forth and the entire discussion ends up really revolving around this social nonsense and not really being about discussing health topics.

I set up a site called r/HealthWorks ages ago. I've tried repeatedly to figure out what to do with it and I remain stymied and that may never change because the truth is that I have spent nearly two decades getting healthier while the world calls me a liar and a teller of tales and accuses me of being mentally deranged, so there is no place it's really acceptable for me to talk about health stuff.

I've spent a lot of years trying to not end up like Semmelweis, who -- unlike me -- was an actual physician with actual studies to back up his crazy claim that doctors should sterilize their hands before delivering babies. Nonetheless, he ended up committed to an insane asylum where he was basically beaten to death in short order.

https://en.wikipedia.org/wiki/Ignaz_Semmelweis

I'm a former military wife and homemaker and had an entry level job with Aflac for a few years. The world is vastly less willing to listen to me than it was to Semmelweis to the point where I have been told that it is my fault people attack in me forums in violation of the supposed rules and I am the problem and I have been banned from more than one forum for the crime of just trying to talk about my life and trying to find some means to discuss health topics because my life literally depends upon my ability to seek out good information.

Hacker News has been the least worst place for that and even here I have had people attack me and tell me I deserve to be attacked for talking about "my cockamamie ideas" and that sort of thing. So it's not like it's some kind of safe zone for me, it's just a place that tolerates my presence to some degree and I can occasionally talk a little bit about health stuff, but it's really not adequate to my needs and the burden of this whole thing has taken a tremendous psychological toll on me.

I have a lot of baggage over the whole thing and I often feel like I am losing my marbles and that only makes me all the more unable to find some means to engage effectively in discussion of health topics.

So I don't have a solution, but I'm actually a talented moderator and I actually know a lot about fostering good discussion on health topics, I just have no means whatsoever to establish a group of people anywhere on planet earth who actually want to talk with the likes of me about health topics.

Most people have made it abundantly in-your-face super clear that if they must choose between slow, torturous death or being polite to me, they would much prefer slow, torturous death and I left all the CF lists I was on years and years ago.

I know exactly one person with CF who sometimes talks with me (edit: Other than my son, obviously). She hunted me down after I disappeared from all the lists because her number was up and she didn't want to die. As far as I know, she is still alive, though I haven't heard from her recently and she's now past the age of 40 -- which is quite old for classical CF -- so it's possible she's passed on and I'm just never going to be notified by anyone if/when she does die. ¯\_(ツ)_/¯