Linda Crew

This comment showed up on  a blog post I wrote a year ago, so I thought I'd move it to the top where people would have a better chance of finding it. Everything the commenter writes here rings true to me regarding the webside, Benzobuddies.org.

 

 

June 06, 2019 8:27 AM EDT

I experienced the same thing on BenzoBuddies. At first it was a great forum and others on that forum helped me through the toughest times of my withdrawal. After I healed, I thought I would pay it forward. I was doing a good job helping others and then decided to introduce outside sources of hope and encouragement. I was instantly reprimanded and when I complained, they pretty much locked down my account to where I couldn't post anything without moderator approval, nor could I Personal Message anyone. My account was for all intents and purposes...worthless and not usable. I told one moderator in particular that you need people on the site that healed to help and give hope to others. She dismissed it and said I thought I was "special" and "better than everyone else." Because I volunteered my time on the site? Needless to say I don't go on BBs any longer. Their draconian rules are only meant to stifle what they claim they are about, which is giving others hope. Too many rules, too many moderators on a power kick and too political...that's how I would sum up BenzoBuddies. Plus too many hard core people that claim they never heal when they don't tell "rest of the story." Almost all of those cases involve being poly drugged and having preexisting medical conditions prior to any type of anti-psychotic drug use.

- Igotmylifeback

 

 

Like this poster, while I was initially relieved to find the Benzobuddies site and learn that I was not along in the hell I was going through in withdrawal from Xanax, the place quickly became a negative in my life.  The nastiness shown to me by certain members and moderators was hardly conducive to healing when what is so sorely needed is kindness.

 

I right away broke the unspoken Benzobuddies rule that says it's okay to go on at length about the amazing book you're going to publish just as soon as you get well, but you mustn't actually DO it.  Apparently it's hard on the feelings of people who want to tell themselves they're going to write book.  They're enjoying collecting  posts of encouragement and admiration from others for the writing skills they're already displaying.  Actually writing a book makes them face the fact that they are NOT writing a book.

 

I had hoped the story of my eventual recovery would be helpful to others. It certainly wasn't helpful to me.  Okay, it's true, it WAS therapeutic to feel I would have my say and tell what it felt like to sit in each of these doctor's offices, but in writing out and going over and over in editing the most painful scenes of my ordeal, I really set myself up for PTSD. People who just forget may do better. But, I'm a writer; that's what I do.

 

Once my book was published, BB moderators scolded me if I mentioned it on the site.  Occasionally the moderator, Colin Moran, would talk about setting up a thread where books by members or former members could be listed.  Funny thing, that list finally went operative about two days after closed my account. I am not exaggerating.  I assumed my book would be on that list, but a fellow BB whom I'd befriended off the board told me no, it wasn't there.  When she suggested Accidental Addict be listed she was told they couldn't because I hadn't personally requested it.  Ha! How's that for a Catch-22? Because now that I was off the board, I had no way of contacting them anyway.

 

Well, nuts to them. In the end, I doubt people on the BB board are the absolute best audience for my book anyway.  So far, it's probably had more impact on people who start reading it just to check out a trainwreck story of somebody else's problems, only to find that drugs that gave me grief (Oxycodone and Xanax) are the very ones they themselves are currently taking.   

 

So, heads up! If you're taking Xanax occasionally to sleep, you may be compromising your brain.  You won't know how much until you try to go off.  Please, educate and save yourselves.

At the time I finished up Accidental Addict, I had only the kindest things to say in it about Benzobuddies.org, a message board for people trying to get off of benzodiazepines. Now I have a few afterthoughts and, as Rachel Platten puts it in my favorite line of “Fight Song:” All those things I never said, were wrecking balls inside my head.

It’s time to say them!

For me, it was a relief to sign onto the Benzobuddies board, to find that others were suffering from this mysterious discontinuation syndrome that most people could not get their doctors to even recognize. I was not alone! It didn’t take long, though, to clue into the playground nature of much of the discourse, and note how anger at doctors and a person’s situation could quickly translate to anger for others on the board.

Along with the sharing of comforting commiseration, a continual frustration against the medical community is voiced, and everyone laments our seeming inability to get the word out about the dangers of these drugs. Here’s where I thought I had a contribution to make. It seemed clear to me that people still in the throes of withdrawal and recovery from the brain damage done by benzos cannot be taken seriously by their doctors. It’s too easy for them to write everyone off as simply nutcases. My plan was to heal and then tell my story. Since I was already a writer, this assignment seemed like a no brainer. I innocently thought the fact that I had such a squeaky clean record for prior substance abuse made me an excellent poster girl for this issue. How could the plot be anymore straight forward? I was a solid person. Xanax and Oxycodone damaged my brain. I struggled to heal and finally did so, and without the help of any medical professionals. So, beware, it can happen to anyone.

It’s not like I was the only one to consider writing a book about this, though. In fact, it’s a popular topic, the books people on the board will write sometime in the future when they’re finally up to it. People float their ideas and collect endless encouragement. People compliment each other on their writing and say how wonderful these unwritten books are sure to be.

When I posted on the board that I was already writing a book, however, the moderators jumped all over me. I guess it was threatening, somebody going ahead and actually DOING it. I was told, for the first but not the last time, how seriously they take their rules. Got it. But I knew I didn’t need anybody’s approval or encouragement to tell and publish my own story, and that seemed to disturb them.

When I posted that I had indeed published Accidental Addict, the moderators removed my post, citing rules against linking to any commercial sites. Same thing if I ever said I’d done a blog post people might want to check out. Nevermind that there were no links. Never mind that the picky rules they would laborious write out were enforced only selectively, and others were allowed to post links to blog posts, books of interests, YouTube videos etc. When I would speak up about my book, the moderators—one in particular—would swoop in like a pack of the witch’s flying monkeys and disappear my posts, issue stern warnings against me.

I came to feel that the Benzobuddies board has rules, but the moderators have no wisdom in their “rulings.” And it’s not about these stated rules anyway. It’s about breaking the larger, unspoken rules. The consensus on the BB board is that we have nothing to be ashamed about and our story should be told, but people who actually dare to speak up, go out there and take this story public are penalized. I watched in dismay as a fellow BB friend interested in setting up a boots-on-the-ground group to help local suffers was reprimanded. What? She should have been encouraged. Privacy rules were cited, but what if people aren’t worried about privacy? What if some of us truly DON’T feel ashamed of the position we’ve been put in and actually mean it when we say we want to help educate people about the dangers of benzos?

The Powers at the BB board look askance at anybody who actually wants to try to help out in the wider world. This was most evident in their booting off of Monica Cassani, a San Francisoco woman who worked tirelessly for years to offer a website—Beyond Meds—which contained resources for people trying to get off of psych meds. The technical rule she broke, according to BB, was posting a link to her site. It was commercial, they ruled, because she had a button for contributions. Ha! As she put it, she didn’t collect enough for a weekly latte! Never mind. The real rule she broke was that, like me, she refused to kneel before the moderators. As one of the mods put it, “she was such a difficult woman.” Right. Difficult because she never signed onto the idea that the mods were all powerful and all-knowing.

In the end I was thoroughly excoriated for unabashedly using the term “addict” in my title. Reams (if that’s a word that can be applied to on-line posts) are written on the BB board lamenting the misunderstanding in the wider world between the terms addiction and dependence, as if avoiding the label of “addict” will help the slightest in speeding healing. People, I’m here to say that your brain doesn’t care what you call it, the physical effects are the same. I had doctors who treated me like an addict and doctors who insisted I wasn’t one. None were any help at all, so what difference does it make?

Yes, we desperately need the doctors to understand what’s going on here in both the benzo epidemic and the opioid epidemic, but in the meantime, shouldn’t everybody be encouraged to get their stories of iatrogenic addiction out there? My idea, in sharing my story, was to give people a heads up and let them know they better have their own backs in accepting prescriptions of any of this stuff. It’ll be great, someday, when and if doctors understand all this better, but in the meantime, save yourself.

Read all the cautionary stories you can find. The question is not whether you are officially to be labeled an addict; the question is whether the drugs you’re taking might be hurting you without your even realizing it.

Many people find help on the Benzobuddies board, and you may too. But please don't take what you read there as the last word on anything.  Read More