May 31, 2011

You Are Loved & Important in My World

Photo found here

Trying to maximize my membership in the amazing powerhouse that is WEGO Health, I posted a discussion last night about a particular struggle I'm having in my online communities.  Responses are trickling in ... and the buzz around the issue promises many more in short order.  This is certainly a question I think we'll be kicking around for some time. 

In the meantime, however, I wanted to share with you this struggle the "health community leaders" took on, as well as how we are working to aleviate it.  I want you to know how hard this group works for our communities, so you understand that we are not just writers here to impart our so-called "wisdom" and move on, but that we are listeners, carers, and supporters here for you.  We love to share our experiences - but not as much as we love to INTERACT with you and try to be what you need us to be.  My post is just one type of issue we work on, alongside topics such as providing real value to community members, writing purposeful posts, and finding out what concerns are top for our members.  Many of you are leaders of your own communities, so you understand how much care we put into what we do.

Lately, I'm struggling with how to work with people who bring negativity into groups.  This is a problem I've seen recur in many places, but I'll use my most recent example from Facebook.  In one group, a person asked for some positive things any of us have gained from our experiences as chronic patients.  I was so excited, I quickly jumped in with my two cents.  A few others followed suit...then things took a turn.  A few people shared their frustrations with the world (which are EXTREMELY valid, of course!), but in an overwhelmingly depressing way.  They shared their decisions to simply "shut up", "keep it to themselves", and "stop bothering" everyone else.

To be totally honest, I am a bit unhappy with them for doing this in a conversation specifically asking for positives.  If they really had nothing to add and wanted to share their frustrations, I think it would have been more appropriate to create a new chain.  But, it wasn't my post and it's not my place to say, so I haven't.

What I did, however, was attempt to inject some positive back in.  I wrote another comment, insisting that as real as their bad experiences have been, there are still a lot of people out there who do believe them, support them, and want to talk with them.  I also discussed some options & resources out there for trying to communicate with friends, family, & doctors who are dismissive at best.

The reaction I got was someone telling me they were just trying to share their frustrations and "someday they'll learn to just shut up".  Now I'M so frustrated.  Another person has been commenting to this poster as well, suggesting that she sounds truly depressed and encouraging her to seek help for the depression.  I added one more comment trying to convey that "shutting up" is exactly the opposite of what I'm encouraging.  I said, tell me anything you want including these bad things, but at least feel a tiny bit better having done so knowing that I do believe, care, and am not the only one!  This person has since posted again, sharing a very scary train of thought...but finally ending on the note that perhaps they will try to talk with us more in the group and see if it can help them.  I have no idea where this will go.

I know from past experience that I may have completely missed the mark here.  My best intentions may have annoyed her instead of encouraging her.  I'm sorry if that's the case, though I can't really regret having said what I did because I thought it through to the best of my ability.  But, it still left me confused, frustrated, and out of ideas.  So I turned to my handy-dandy WEGO community, and posted a discussion on this topic.  I must have hit a nerve because by the next morning there were Tweets and Facebook posts flying with links to the discussion.  It makes sense - in that community of leaders, we must all run into this same problem.  The impression I have is that it isn't an easy question for anyone - many people seem to be reading the discussion but are still considering their responses before posting.  I'm really looking forward to what my peers will say.

In particular, I posed these questions:
Do you run into similar problems in your communities? 
How do you balance wanting to encourage positive behaviors without isolating those who really need to vent? 

The worst part of the conversation on Facebook was when the poster felt that I hoped they would "shut up".  People need to vent, to be validated, to be heard.  I believe we, as chronic patients, actually owe it to each other to hear the negatives when people need to release them.  But we also deserve to enjoy ourselves and have a place to turn that provides a reprieve.  Some of us even use a direct approach where we vocalize 'positives' and hope as much as we can.  What are some ways to balance everyone's needs, and support those who are down without letting everyone wallow in despair?

As more replies are posted to my WEGO discussion, I'll try to incorporate them into my activism activities.  I welcome your thoughts on the topic if you have any you wish to share.  Above all, I hope you feel as loved and important and we hold you to be in our hearts.  Everyone needs to know someone's looking out for their happiness:)
Photo found here.

1 comment:

  1. My WEGO site limps along with sometimes no activity for long stretches of time. When people post sometimes I do hear the 'I should just not post cause of the unhappy.' I find that sometimes it is a misreading of what they meant. Without hearing tone something that reads sad, etc when said comes across very different, the inflection making the difference, when written. (best quick example when joking is taken as serious.)
    It did not occur to me to go to the WEGO site for some help with the group. (Strangely when I say I may have to close it due to inactivity those inactive will tell me please don;t, the site is very important to me, just to know it is there.) Thanks


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