This issue has been nagging at me for quite some time. It’s not one I take lightly. Having served as a volunteer administrator for groups before I know what a tough job it is, so my bringing such an issue to light is not a knock against anyone or a job they are doing. Just my own thoughts on the matter.
I often tend to go more “underground” (so to speak) when I’m dealing with something serious. Talk less, support others less. Be less vocal or present.
It’s not because I don’t want to support people, it’s because I can’t. It’s almost like an animal who finds shelter to heal & lick their wounds. It’s just one of the ways I cope with what I’m going through.
Some people do the opposite.
There’s no right or wrong way to deal with a personal hardship. It just is there. How we deal with it varies as much as the symptoms we live with on a daily basis.
That said, I have left some support groups (even in my own communities) at times without sharing the reason for a few different reasons. Sometimes I just need a break. Other times, it’s because I feel that my needs & what I need has changed. Maybe I just need more privacy, less “triggering” feelings or simply just some space.
None of these feelings are directed towards any one person or thing.
The fact remains is that I respect people’s opinions & decisions, even if I don’t see eye-to-eye. I always have.
What crosses a line & breaks my back & sometimes what causes me to leave & then not return is other people’s lack of respect for credible information I find & share.
This was no more evident than with the example I used in yesterday’s blog post talking about drug interactions.
I get some people after I’ve left a public group still disputing the information I found & shared awhile ago that others share as a point of information.
This is information I found after finding credible medical sources & drug databases & cited as such. (After all, as a journalism graduate this is how I approach information. I always consider & share the source. Vet it for credibility & reliability before I share it with others.)
In posting such information I am not passing judgement on people’s decisions. I am simply sharing information why some of us may choose a different way or have decided to not use a supplement or a potential issue that could result from using it. I didn’t conjure this information.
Yet it seems invariably that information sharing triggers some strong emotions that trigger a borderline (almost personal) backlash against the person who found the information & shared it.
When sinking to a personal level & picking a fight over simply sharing & posting such information, that’s not support.
I have & never have offered medical advice or advisement. It’s not my style & I’m not qualified to do so.
I am a person with two rare diseases the same as the counterparts who are picking these fights every so often & repeatedly starting the same conversations in different support groups because they don’t like the information that’s shared in the other.
It happens so frequently even after I leave that’s why I’m addressing it here. It’s a source of frustration. I still get pulled in after the fact because I was the one who found the information that pointed out a potential issue.
This is the lion’s share of what truly keeps me out of support groups for good.
I don’t “blame” anyone for this, organizations or individuals aside. I don’t have an answer for it really.
I just don’t see it as a healthy place for me to be personally to be exposed or to engage in such discourse when it comes up, so I leave instead of kicking up public dander after I’ve shared the information I found. I leave for good & stay out when the same scenario (given above) plays out.
It’s a decision I make to avoid losing precious energy on arguments that aren’t even true arguments. Picking my battles so to speak.
I’ve never understood how providing objective & credible information on a potential problem causes people to become so angry, simply because they don’t like or agree with the information.
It is this type of dialogue that keeps me out of many support groups because it happens more frequently than people realize & it’s draining to combat. I don’t have energy to waste on it.
I’m sure I’m not alone in this, but with 800 pound gorillas being what they are, it’s worth bringing attention to.
I have found similar things on support groups. I also find that a lot of “support” groups is a place for people to just whine and not do anything productive. but that’s a different topic.
I recently shared some information about something on a group, that is normally supportive and more mindfully based, but the information was met by someone siting “facts” they found on another facebook page. I looked it up, it wasn’t fact is was opinion.
I know what I am talking about or I don’t say it.
But I didn’t argue.
I just walked away.
and I haven’t been back.
another group the people were giving out medical advice. It really bothered me, so I wrote to the admin. I never received an answer. I don’t go there anymore either.
support groups … well I go there when I need, but for the most part, I have found that they aren’t that supportive.
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