Friday, January 22, 2016

Internet healthcare 4tw! Sometimes... - On the ups and downs of medical discussion groups

My dog was drastically sick, I made a vet appointment but got in the internet right away and started a change to his feeding regimen based on likely diagnosis and what had worked for others and would not be a problem for my dog.  He was already feeling better the next day when we could get into the vet.  My husband said "Internet healthcare 4tw".  (Although this is an ongoing battle and we're still making adjustments with the help of our vet.)

In my research, I joined a discussion group.  Discussion groups have been very helpful to me in the past, although one must tread carefully when taking advice from random people on the internet.  (Don't ever take my advice, take my information and my experiences and go research what I said for yourself.)  One person can make or break your experience in a discussion group.  There are a lot of different types to look out for:

The good folk in discussion groups:

  • The encourager - This person lets you know you're not alone.  They let you know that there is hope.  They check up on you that you're following your program.  They let you vent when you need to vent and shut you down when you need to get a grip.  They may not solve any problems, but they equip you to stay engaged and take advantage of resources that do help.  This is a role you can fulfill even as a newbie in the group.  You can say "I'm sorry for your loss" or "that happened to me too" or "it sounds like you had a rough week, what's your plan for dealing with this next week?"
  • The Guru - The guru has been around a long time, they've seen fads come and go, they've seen different solutions work for different people, and they're willing to discuss all those potential solutions.  Maybe they're a professional that likes the additional challenge of unique cases he finds in the group, or maybe they are an overcomer who has been where you are now.   Hope this person takes an interest in your story, but don't monopolize their time, as many people need their advice.  Common advice from the guru will circulate and you will end up getting it from other members as well.  Aspire to become the Guru
  • The Nerd - This person may not be very knowledgable yet, but they are very well read in general and they'll eat up every bit of literature they can, maybe even run some calculations for you.  This person is useful for coming up with new ideas, but their ideas may not be well tested enough to try before more long standing solutions the guru offers.  This is usually me.  Butting into conversations I know nothing about, providing reference links that explain what the guru or his follower said in more detail.
  • The sharer - this person may not know a whole lot, but they're willing to add to the group knowledge with what did and did not work in their situation.  An overabundance of sharers with no guru or nerd to wade through the data can be counterproductive, but in moderation they can help you find new solutions or avoid common pitfalls.  I try to include this in my group participation.  Sharers can turn into salesmen.
The neutral folk:
  • The fellow sufferer - These groups stagnate and die without problems to solve, so the sufferer is a necessary member although not a direct contributor.  
  • The Guru follower - Useful for offloading some work from the guru, and pointing out the guru or the nerd when the sufferer has a difficult issue, but often prone to parrot old advice without knowing why it is so or when it is not actually so this time.
  • The true believer - Has an unusual viewpoint and persists in espousing it at every opportunity.  They should not be totally ignored, sometimes they are right, or they at least have stumbled upon something that works for completely different reasons than they believe it does.  To be avoided when crossed with the salesman or the dictator.
The ugly:
  • The salesman - This person is on the group to promote a product or idea, and they don't really care if it is the best idea for you.  The salesman doesn't care what all your protocol entails as long as it includes their product/idea.  To be avoided at all costs when their solution is not supported by the majority of the group and doesn't stand up to a skeptical research binge. 
  • The dictator - This person has a one true protocol for sucess, and they want you to ignore all doctor's advice and all common sense, and all independant research, and listen to them, even though you just met them and you have no references to back up what they say.  Some gurus turn into dictators, the protocol may work but it's still a bad idea to shove it down the sufferer's throat, and the dictator is more resistant to new information and new solutions that may work even better, can't handle special cases that can't follow the protocol, and runs off people that still want to work with a professional that follows a different protocol.
  • The iron mod - Sometimes the moderator is an ally of the bad guy or the true believer, and enforces compliance among the membership.  A good mod may censor heated conflict or salesmen, but the iron mod suppresses reasonable discussion of alternative ideas.
  • The guilt tripper - This person wants to make everything your fault.  They feel superior when you look stupid.  If you don't have the resources to follow the best case protocol, there is no second best option for you and you're just not trying hard enough.  Every time you have a snag they pounce on your mistakes rather than help you stop making them...  Occasionally a useful person with bad bedside manner looks like a guilt tripper, so you might give them some leeway until you get to know them.
Some of these ugly personalities are really hurting themselves.  They are trying to convince themselves that what they are doing is correct for them, and then obviously what is right for them is also right for you, and you not taking their advice is an attack on what they are doing...  Although they are hurting, vocal sympathy is not always helpful in dealing with them, they may lash out if you strike close to that raw nerve.

Besides the people involved, the size and format of the forum matter.  The ideal forum is small enough that everyone gets to know each other, and every thread is seen by some of the good folk before it gets squashed down the list.  This can be done by keeping total membership small, or by having a format that breaks things up into subtopics where different gurus hang out...

So I do encourage you to participate in discussion forums, I wish you luck in finding mentors in cozy environments like I did in Minimalist Runner and Ancestral Running, and avoiding dictators in huge crowds like I encountered at Canine Megaesophagus support group.  

Above all, and always, stay skeptical.  Use the group as a place to get/share research ideas, as a place to ask/answer questions, as a place to commiserate, but don't mistake group consensus for absolute truth, or the viewpoint of someone across the world as more important than your own eyes on the situation...

I don't know at this point if I'm sticking with the Canine Megaesophagus group, I'll at least be abandoning my thread where the dictator is subscribed.  (I usually like to keep as much as is reasonable in on thread so the nerds can get a coherent full story without having to search all my threads, but if she is bothered enough by me to call in a moderator, and won't unsubscribe to the thread, I have to leave the thread to leave her.)

If I get comments on this post I'll share more of my research on Megaesophagus in dogs, but I've mostly kept my dog health stuff off this blog.