Monday, December 17, 2007

Internet Suport Groups-Hypocrisy, dictatorship, and Learning Who you can Trust

"So, you were in jail. You can't be expected for us to approve"
"You're actions may have even made it more difficult for us. The DEA lumps us together you know"
"Maybe you belong on an addiction website. They help people like you, you know"

This intro would not be complete without the piece de resistance-from my first group, in fact. After I posted my experiences, another group member took it upon herself to warn me. I was banned, after my second post. I answered the leader, telling him, among other things, what I had been told. He brought it to the group, with the question, "Am I Hated", where he says How "some woman" had been "going around" saying how unpopular he was on the group(I cut and pasted one line, which was less than a sentence long, from the warning letter), and how, if he was hated that much, he would delete the group.(A thinly veiled threat to abandon a group of people, many of whom were shut-ins and had no knowledge of other groups.) The person who had warned me forwarded the text to me, feeling that I had a right to know what was being said about me behind my back. When she left, I joined under a different name, using a different email it was worse than I thought. He was saying that I "had been removed" that he didn't know why, and oh! how he was stroked! Things were said about me that I would never imagine about anyone else, and he could do no wrong! The things people would say to keep the status quo. A very small minority posted things like "well, shouldn't we be discussing the group, and what we get out of it, rather than if someone is hated or not" but those came far and in-between...most seemed happy to tear apart anyone who criticized their fearless leader.

Well, that was my introduction to Yahoo Groups, that concerned Chronic Pain…which would lead to my being re-banned (and reinstated) into the same group,which I now hardly bother with, and being given the red carpet treatment into another one, only to be banned within hours of announcing the suicide of a member.

No, I'm not the shrinking, submissive type. On a Usenet group, where I sort of ended up(I went there to answer a post by a doctor, which had been copied by Mr. "Am I Hated"s successor. No, I'm not universally liked there, and even make an appearance on a hate list, I feel more comfortable there than most other places-mostly advocacy groups like the community forum page of the Drug Policy Alliance. it best to hide your real experience? For some, maybe. But, I find it hard to be dishonest about any group's stated purpose, with which I have experience, Plus, it may be of help to those who do have similar experiences-and, are fearful. Or, even if they're not ready to go public, they'll know that they are not the only ones.

I've considered starting a moderated group-but then, would I as Bob Dylan said in My Back Pages, "become my enemy, in the instant that I preach"? Banning those who spam a group, continually, I have no trouble with...but I have found, some people can be helpful one moment, annoying the next. and then, pain aggravates things. It can be a real ego blow to be banned from a group. Would I want to feel responsible for someone's depression? or even, suicide? Pain is a difficult thing to live with...rejection can all-too-often be the straw that breaks the camel's back.

But then, it's not easy to watch people get bullied, abused, and possibly separated from someone who can help them. So-at least for now-leadership is not for me.

I guess it's a good idea to educate pain patients-of all backgrounds, and who have used different ways, wise, foolish, and in-between, in attempts to relieve their pain. My jail time (and those of anyone else) is a definite lesson in how not be assured of getting pain relief...and, also a picture of true desperation, showing how hard it is to live with pain. Of course, that means not keeping silent

Like I have said, I am a radical. And, will bring up things that may make people question things they thought they knew about addiction, pain, and the not-so-thin line that separates them.


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