Online Support Groups have their own character different than anywhere else. Almost every conflict I have ever seen is because of that perspective. I saw this posted on another community so immediately lifted it for here:
"Some people think of this place as a support group in the light of sharing feelings and experiences. For those people, I think what is primarily wanted is emotional support for the bad experiences we have had along the way.
Others think of this more as an information source, a place to share treatment plans and research and get practical help in dealing with all manner of things.
Some people come from an emotional, humanistic perspective.
Others come from an analytical point of view.
So if someone says "I did x, and y happened," and someone responds, "I'm sorry to hear that. That is very rare and it's too bad it happened, but here's the mathematical perspective..."
Well, in that scenario, maybe half the people reading will nod and say "That makes sense" and half will say "how insensitive!"
And both "halves" are "correct" from a certain point of view.
If you are in a real-life "support group" to deal with an issue, no one would ever try to use statistics in response to someone's sharing of an emotional event.
On the other hand, if you are trying to make an analytical decision, you want the broad numbers and chances and ratios.
If I am in a support group because I nearly died from a peanut allergy, I want to talk about how it made me feel and not hear statistics about how healthy peanuts are.
But if I am trying to decide whether or not to add peanuts to my diet, I want to know how LIKELY a severe allergic reaction is--- 1 in 1 million? 1 in 5?--- and also the benefits of peanuts, so I can make an informed decision.
If I'm the one in a million who something happens to, it doesn't matter to ME that the other 999,999 were just fine.
But if I want to decide whether or not to try peanuts, I want to know what my relative risk is.
Both "sides" have a valid point. And if you try to mix the two groups, hurt feelings or frustration can ensue.
But both "sides" have a valid place here, and perhaps if we just all considered the various points of views of others we would be less inclined to see so many threads devolve into disputes.
Surely I'm not the only one here who can see several valid points of view and appreciate them all?"
Others think of this more as an information source, a place to share treatment plans and research and get practical help in dealing with all manner of things.
Some people come from an emotional, humanistic perspective.
Others come from an analytical point of view.
So if someone says "I did x, and y happened," and someone responds, "I'm sorry to hear that. That is very rare and it's too bad it happened, but here's the mathematical perspective..."
Well, in that scenario, maybe half the people reading will nod and say "That makes sense" and half will say "how insensitive!"
And both "halves" are "correct" from a certain point of view.
If you are in a real-life "support group" to deal with an issue, no one would ever try to use statistics in response to someone's sharing of an emotional event.
On the other hand, if you are trying to make an analytical decision, you want the broad numbers and chances and ratios.
If I am in a support group because I nearly died from a peanut allergy, I want to talk about how it made me feel and not hear statistics about how healthy peanuts are.
But if I am trying to decide whether or not to add peanuts to my diet, I want to know how LIKELY a severe allergic reaction is--- 1 in 1 million? 1 in 5?--- and also the benefits of peanuts, so I can make an informed decision.
If I'm the one in a million who something happens to, it doesn't matter to ME that the other 999,999 were just fine.
But if I want to decide whether or not to try peanuts, I want to know what my relative risk is.
Both "sides" have a valid point. And if you try to mix the two groups, hurt feelings or frustration can ensue.
But both "sides" have a valid place here, and perhaps if we just all considered the various points of views of others we would be less inclined to see so many threads devolve into disputes.
Surely I'm not the only one here who can see several valid points of view and appreciate them all?"
Because I'm me, I just have add to it. We need to respect where each of us are on that spectrum. My perspective in regards to PsA is simply this. PsA is disease that the outcome is largely determined by HOW much we fight back and fight through the pain, attend PT take out meds etc etc..
As far as I am concerned it is war. I understand feelings I even have some. However I am more likely to THINK, (I won't say it) "Group is at 9:00 bring your happy drugs" in response to the feely stuff. I'm old. I was never told to "use my inside voice" or "use my feelings words" so I'm not even sure what those two phrases mean. One I think means "shut Up" the other I think means "I don't care whats going on, I want you to know what ever it is, its about me"
Anyway I just lost a battle in my war. My shoulder is gone. I mean its gone. The ball finally left the building and there is no soft tissue (saved on an MRI) The socket is two bones. It was functioning ONLY because of the PT I had done building up the muscle. (and to think I went in to ask if I could either get it shot up or maybe a rotor rooter job) So now I am trussed up like a Christmas present until I either go to Seattle or the Surgeon from Seattle comes here a$ it i$ bit a more recon$truction than the local$ want to try. BTW this is from a motorcycle injury years ago and less to do with PsA.
So in the next few weeks I'll be disappearing for a while. That means you all will have to be as mean and nasty as I am and keep each other moving forward. I really have to work now to post as I can't operate a tab, and don't use a PC or Lap Top at home (so as to preserve my marriage)
