Sunday, April 5, 2009

All About Support Groups

I received an email asking for support group advice since I "don't seem to care much for them" "Are there any that you do like?" LOL You know who you are. ::hugs:: It's a good question.

There are often times where you will witness me encouraging people not to listen to advice on their support groups for reasons discussed about one or two posts down. But that doesn't mean I don't think they have merit. They do.

So today I'm going to make a few notes on my views of Fibro groups, how to join them, how to get what you need out of them, and when to avoid them.

-I do not suggest joining every group of Fibro"mates" out there. (A little side note. I am not a big fan of the term Fibromites. It makes me laugh every time. Sounds like a bunch of fleas or something so I'm going with Fibromates. -grin-) It is good to want to be supportive of our condition and the people who suffer from it but at the same time, you need a safe haven: A place to go to relate to others. If you spread yourself too thin between groups you will find it is an all day job of keeping up with every social network you've set up.

-Set up camp. Trust is a huge factor when choosing your favorite support group or groups (I suggest no more than two) so join many...lurk for a while, see if you trust the advice that is being given. (The advice I'm referring to is medical. Personal opinion advice really depends on your personal views. If you're a religious person, you might want to choose groups that are heavy into prayer. If you're not singularly focused on religious aspects, but science, choose a group that is statistic and fact heavy.)

-After you've found a primary group, begin posting so you can become a fixture in that community.

-If your views come under personal attack, you can always change groups. That doesn't mean you should leave of course. Many of you know I'm constantly butting heads with someone and that doesn't scare me off. For me, I try to be diplomatic, recognize what I could have done differently, and apologize if I truly feel I was off kilter. HOWEVER, not everyone is able to be diplomatic and Fibromates are ofttimes hot-headed and unreasonable. (Come on! You know we can be ultra-sensitive. It's part of what Fibro is!) My point is, don't get discouraged by disagreeing with someone. A support group is meant to relate and relax. If you find you cannot do that, move on or lay low for a few days.

-The best function of a support group is to relate to others. Fibro patients have a lot of crazy things happen to our bodies. Some of them are more common than others. (Eye twitching, itchy skin, painful skin patches, red bumps, blurry vision, nasal drip...etc.) The uncommon ones are what we need the groups for "Does anyone have...". Posting when you've had the same experience or something similar is a gift you give the person inquiring. I'm sure we've all felt the relief that comes with someone saying "yes, I've had that and this is what I've done about it". This is what support groups are for.

-Secondary to relating is the "venting". It needs to be done but for me...I hate this aspect of the groups. Others find it invaluable and I can't blame them. But let me explain why I hate it so much. Let's say you're having a bad day. You've got so much pain you just want to scream so you go on a rant about how your husband(or someone) doesn't help you when you're feeling down, you can barely move, you hate your life, and sometimes you just want to scream and wait for it to all be over. The responding posts can go either way but OFTEN it goes down hill. Fibro patients are frustrated! We hate that we have this and there are times where we just want to ...GRRRRRRRR. So as I was saying, often the responses aren't... "Hey, you'll get through this, we're here for you, we know how you feel."

Instead it becomes. I know how you feel. I hate my life, I wonder why I have to have this, I don't understand what I could have done to deserve the constant pain. I wake up and can't move, can't get out of bed, my mother hates me, my dog pees on me...

Okay you can probably sense my agitation building. For me this is the OPPOSITE of help. I've jumped in on 3-4 threads like this asking everyone to reel it in. Always to extreme backlash so lately I've stopped doing it to give people a little break but something tells me, I'll get mad and do it again. And the reason I get mad is that this isn't helping anyone! It's okay to rant but wow! People need support groups to feel good, to relate and loooooong threads of everyone lamenting about how much their life sucks is frightening. Not just to me who sees all of these women and men give up but...too the recently diagnosed who read this and panic.

-So...for me, My Friends, I suggest avoiding these threads when you notice them pop up. It's okay to be supportive but the negativity will truly bring you down. I also suggest you listen with a careful ear to medical advice and alternative medicine inventions. Take note of people who make good comments, cautious comments, comment often, and are in general nice to others. Create a small list of those you trust instead of listening to all.

There's my advice! And truly, this is only my version. I'm sure many would disagree with me on a few points but for me, support groups in small doses! LOL

All my best wishes for 98% days,

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