What we say here, and how we say it, matters

[[Fl...]]

This will be my last post to this thread. I regret that I started something that has caused more harm than good. What started out is a reminder to not tell people that there is evidence that this damage is permanent, turned out to be a debate over whether or not suffering people should be allowed to speak. That was not my intention. I do not think that the worst will not happen to me. It already has and will most likely continue. Espy

 

There is nothing wrong with your post. You posted an opinion (that I personally don't fully agree with if I understand it correctly) and now we are having a discussion about it. What we need is MORE discussions. That's how everyone learns and grows.

[[Fl...]]

I've highlighted in purple what I'm addressing in 1st above quote.  Take note, I did not report it, as I could have.  The second quoted post is thoroughly inflammatory in nature. 

 

Maybe you could explain exactly how any of these things that you have an issue with are "problematic".

[[Ma...]]

This will be my last post to this thread. I regret that I started something that has caused more harm than good. What started out is a reminder to not tell people that there is evidence that this damage is permanent, turned out to be a debate over whether or not suffering people should be allowed to speak. That was not my intention. I do not think that the worst will not happen to me. It already has and will most likely continue. Espy

 

There is nothing wrong with your post. You posted an opinion (that I personally don't fully agree with if I understand it correctly) and now we are having a discussion about it. What we need is MORE discussions. That's how everyone learns and grows.

 

 

Agree! For example I still remember my little fights with Floridaguy, I just forgot the topic and now I adore him

And you do not know, Espy, if you will suffer long term. You never know!

... sometimes I just want to jump into a plane and visit each member and hug everyone. .. 

[[lo...]]

I agree that what we say and how we say it matters. I would never wish to be given false hope that recovery was assured when no one can guarantee it.  I much prefer being given realistic information. I am very open about my lack of recovery and the fact that I am unlikely to recover taking into account all circumstances that led me to come here in the first place and the particular way benzo withdrawal has affected me. I continue to see improvements, my inability to walk remains unchanged.  We are all different, we have different medical histories and different experiences of withdrawal. I do not understand why this is a problem.  My reality is mine and mine alone and only I know what that reality is, no one else does.  I am not afraid, I simply deal with what is, but I do wish it could have been very different.  I wish everyone the best outcome possible whatever that may be.  I really prefer not to discuss my recovery or lack of it any more except with a few trusted friends online and in real life.

[[ea...]]

I feel sort of sad this thread did not go the way espy wanted it to! She meant so well but for whatever reason several people took offensive and the rifts began. I would guess that every single on of you are good people who meant no harm, but several posts did read as "hurtful" or maybe just angry for o good reason. Yeah, the benzo brain is an unstable one and we often don't think too well during bwd. I sure didn't. Nothing wrong with admitting this, as its the truth!

 

HOW we talk with each other is very important. Forums can be difficult to navigate anyway. When you first join one, it takes a while to get the over all "tone" of that forum. I have been on a few FB groups. NONE are as good as BB but some of them do have some wonderful ideas and definitely some great photos. If rudeness is a forums general tone, I backed off asap. Don't need that! If the tone was all about "damaging, permanent damage, brain damage, illness, sickness" - I was out of there like a bat out of hell. BB has always been pretty rational about that stuff and encourages people to be positive no matter what. One of the BEST things about BB is the wonderful information you can find here without searching the entire internet. If you take the time to read all those highlighted topics at the top of each page, you will become better informed. But you also need to understand that NO ONE on earth knows the total truth about these dreadful drugs. Almost all of the information is based on direct observation (Ashton) or on loosely defined research. If one of you knows of some "real" hard-0core benzo reseacrh please Pm me! I'd love to read it.

How we speak with each other on the forum is delicate as its so easy to misconstrue. You have no facial expression clues, body language clues. I could state "I feel like I am dying" but IN PERSON you might see me smile and shrug, telling you I am NOT really feeling like I am dying.  I know yo guys get this.

Bb has always tended to attract intelligent, educated people, who are usually fluent in English and express themselves well. That always appealed to me.

Annie

[[lo...]]

If the tone was all about "damaging, permanent damage, brain damage, illness, sickness" - I was out of there like a bat out of hell. BB has always been pretty rational about that stuff and encourages people to be positive no matter what.

 

it is interesting because I always found the groups that insisted on positivity a complete turn off.  I was very sick and found it more helpful to be with the others who were also very sick and sharing the struggle was really what I found helpful. We are all different in our needs and preferences and we have to find the place that suits us best and that is absolutely fine.

[[co...]]

Yeah

 

I want authenticity not tired tropes.  And I certainly don't want to bossed around by other forum members.

 

The Tone Police.  Hmmmph.

[[Ja...]]

You know. I agree with the OP on this issue. And at first I was mad at cookienose for her posts complaining about being “policed”. BUT then I went back and read some of her recent posts. She is in a protracted hell and can’t speak out of fear of scaring others. That’s awful too. I know what that is like. I told my therapist today what I have been through on detail. She asked why I never told her any of this before? I said because I couldn’t listen to one more person tell me it was all in my head. I jokingly told her because if one more person tried to tell me about how sometimes stress can cause physical symptoms I was going to punch them in the face.

 

Doctors are starting to push people off their benzos at a much faster pace than before. This is going to lead to more severe withdrawal symptoms and more protracted cases. With more protracted cases will come more doomsday posts.

 

The tone of the forum may be changing because the tone of the benzo community as a whole may be changing. Everyone should be able to speak the truth. However, this is a support group in a sense and I agree with Espy about taking others feelings into consideration. However, we need to take the feelings of the protracted members into account as well.

 

Maybe the answer is to continue fighting the fear with success stories. I don’t know. I just know that shunning the most severely damaged amongst us can’t be the answer. We can’t leave these people behind as we heal.

[Guest [ba...]]

I feel that I should try to be as encouraging and positive as possible with each of my posts.  That doesn't mean withholding the truth, but it might mean choosing words with a deliberate compassionate intention of giving hope/strength or at least sympathy/consolation.

 

For example, I do not use the word, 'permanent'.  I don't think it helps and the word can be misleading or misconstrued.  I think there are more appropriate words that can convey the idea that recovery may take some time (which is actually a more accurate statement than inferring permanence).

[[Fl...]]

For example, I do not use the word, 'permanent'.  I don't think it helps and the word can be misleading or misconstrued.  I think there are more appropriate words that can convey the idea that recovery may take some time (which is actually a more accurate statement than inferring permanence).

 

I'm not going to quote the Ashton manual but she was pretty clear on how long it is possible for symptoms to last. With the words of the worlds foremost expert on benzos in mind, you really have to ask yourself which one of these statements is truly misleading.

 

 

[[lo...]]

 

The tone of the forum may be changing because the tone of the benzo community as a whole may be changing.

 

 

I think this may well be true, I see the discussions / angry exchanges on Twitter about the benzo situation in the US.

[[lo...]]

I feel that I should try to be as encouraging and positive as possible with each of my posts.  That doesn't mean withholding the truth, but it might mean choosing words with a deliberate compassionate intention of giving hope/strength or at least sympathy/consolation.

 

For example, I do not use the word, 'permanent'.  I don't think it helps and the word can be misleading or misconstrued.  I think there are more appropriate words that can convey the idea that recovery may take some time (which is actually a more accurate statement than inferring permanence).

 

I am unsure as to how the word "permanent" can be misleading or misconstrued.  I find the word unambiguous. 

[[Fi...]]

I feel that I should try to be as encouraging and positive as possible with each of my posts.  That doesn't mean withholding the truth, but it might mean choosing words with a deliberate compassionate intention of giving hope/strength or at least sympathy/consolation.

 

For example, I do not use the word, 'permanent'.  I don't think it helps and the word can be misleading or misconstrued.  I think there are more appropriate words that can convey the idea that recovery may take some time (which is actually a more accurate statement than inferring permanence).

 

I am unsure as to how the word "permanent" can be misleading or misconstrued.  I find the word unambiguous.

 

This is just a suggestion regarding a word to describe the period of time that benzo & benzo w/d symptoms may last: Indefinite

 

indefinite

 

adjective

US  /ɪnˈdef·ə·nət/

 

not exact or not clear; without clear limits

[Guest [ba...]]

How do I think 'permanent' is ambiguous/misleading?  Imagine if a person makes a 98% recovery.  Would you say they are 2% permanently damaged?  I'm guessing no, since 98% is an excellent recovery.  How about if a person makes an 84% recovery?  A 62.79% recovery?  Where/how is the line drawn (and by whom)?

 

If a person is left with a 20% higher baseline anxiety as a result of their benzo experience, but has learned techniques to completely negate that additional anxiety, would you say they are damaged?

 

When is the term applied?  I think some people start using the word, 'Protracted', at around 18 months (although a few folks choose to adopt it earlier).  When is 'permanent' assigned?  3 years?  5?  10? 

 

While I'll not dispute the possibility of some level of permanent change as a result of benzo use/withdrawal, I think the phrase, 'permanent damage', is thrown around far too quickly and far too liberally, and it may unduly cause fear for some individuals.  So I don't see why I would use the term. 

 

From a who, what, where, why, how perspective, I find the term comes up a bit short.  So I don't use it.

 

Note that I'm not telling anybody that they shouldn't use the word.  I'm just sharing my perspective.  It'll resonate with some people, but not others.  I can accept that. 

 

I think 'indefinite' sounds much less ominous than 'permanent'.  Good one, Fi!

[[Ma...]]

 

Humans choose their words according to how their reality feels for them.

 

You cannot tell someone not to use a word in order not to scare others, cause that is just how humans react with words.

 

If someone gets scared by the word "permanent", he or she will also get scared by the words "endless", "never ending", "non stop"... and so on, or "indefinite"- and people need to use these words. Otherwise the others would not understand how hard the situation is.

 

If you suffer, you are not able "to dose" the pain, not even with your words. Here is the place where we can let go and tell others how we really feel. Even newbies cry and talk in "endless" and horrible pictures, because this is very often the only place they do not need to put themselves together like for their family or loved ones.

 

 

[[Ma...]]

Quote by badsocref

"I feel that I should try to be as encouraging and positive as possible with each of my posts.  That doesn't mean withholding the truth, but it might mean choosing words with a deliberate compassionate intention of giving hope/strength or at least sympathy/consolation."

 

Just speaking for myself, that was perfect.  Mary

 

[[lo...]]

How do I think 'permanent' is ambiguous/misleading?  Imagine if a person makes a 98% recovery.  Would you say they are 2% permanently damaged?  I'm guessing no, since 98% is an excellent recovery.  How about if a person makes an 84% recovery?  A 62.79% recovery?  Where/how is the line drawn (and by whom)?

 

If a person is left with a 20% higher baseline anxiety as a result of their benzo experience, but has learned techniques to completely negate that additional anxiety, would you say they are damaged?

 

When is the term applied?  I think some people start using the word, 'Protracted', at around 18 months (although a few folks choose to adopt it earlier).  When is 'permanent' assigned?  3 years?  5?  10? 

 

While I'll not dispute the possibility of some level of permanent change as a result of benzo use/withdrawal, I think the phrase, 'permanent damage', is thrown around far too quickly and far too liberally, and it may unduly cause fear for some individuals.  So I don't see why I would use the term. 

 

From a who, what, where, why, how perspective, I find the term comes up a bit short.  So I don't use it.

 

Note that I'm not telling anybody that they shouldn't use the word.  I'm just sharing my perspective.  It'll resonate with some people, but not others.  I can accept that. 

 

I think 'indefinite' sounds much less ominous than 'permanent'.  Good one, Fi!

 

I would leave people to decide for themselves if they are damaged and by how much, I would not be in a position to comment on that.  I am happy to use the word permanent as patients do report being left with permanent damage.  Of course this can only be said with the benefit of hindsight and cannot be predicted for any individual in advance. 

[[Fl...]]

The addiction vs. dependence/damage debate is not one of semantics. "Indefinite" vs. "permanent" is semantics. In the case of the latter I have used both interchangeably.

 

What it comes down to is both could be interpreted different ways and both could be considered scary by some. Maybe "indefinite" is softer, but I don't believe that "permanent" is sensationalistic or misleading in any way. Ashton uses that word in the Ashton Manual. So we can try to tone it down or sugar coat it but it doesn't change the facts, and I would argue that doing this is harmful in its own way simply because it doesn't convey the severity of the problem. That's fine for people who have already been harmed by these drugs but not for people who are deciding whether or not to take them for the first time.

 

We can't have two sets of language for this problem, one for the public and one for the wd community. At some point we have to acknowledge that we are all adults here and although there is no need to create unnecessary fear (which I don't believe happens often), we all deserve to hear the truth in a straightforward manner.

[[Wi...]]

Quote by badsocref

"I feel that I should try to be as encouraging and positive as possible with each of my posts.  That doesn't mean withholding the truth, but it might mean choosing words with a deliberate compassionate intention of giving hope/strength or at least sympathy/consolation."

 

Just speaking for myself, that was perfect.  Mary

 

Thank God for voices of reason, kindness and compassion. Thank you Mary, badsocref, Espy.... It's getting rare on this forum, sadly.

[[co...]]

Maybe we should first get qualified as saints before daring to post anything?

 

I don't think anyone joins this forum to be nasty to anyone.  We join because we are marching thru hell together.  Misunderstandings are inevitable...we are humans!  To expect all of us here, suffering, to be at our best while posting is asking for the inhuman imnsho.  I do not go out of my way to make someone upset (maybe blew it a few times); I do try to encourage people.  But I'm not telling them that their attitudes are keeping them sick, or chant 'everyone heals' over and over like a monkey...we are all different.  We respond to challenges differently, we interpret information differently...we *are not all the same*.

 

I am a big enough person to give someone some slack if they're in a 'negative' space. Their 'negative space' doesn't scare me.  They need support, too.  Of course I "get" what Espy intended; but who here didn't already know that???  People should be allowed to BE WHOEVER THEY ARE as long as they aren't breaking forum rules.  But you all want to institute more rules on top of the rules.  As a life long anti-authoritarian, this 'triggered' (HAHAHAHAH) me. 

 

I trust that all of us here are adults...we are also all fighting for our lives.  It's a lot to expect from this population to be perfectly pleasant at all times and to go forth and soothe newbies.  Some days all I can do is survive.

[[Ch...]]

Good discussion and a much needed one.

 

We have a lot of new members from the Lisa Ling special. The newbies will take awhile to settle in, to learn the established guidelines and find their ‘group’.

 

They will also take our example. We all need to ask ourselves what that example will be.

 

Do we scold and throw rules and dos and don’ts at them or do we gently guide them?

Do they need to know right off the bat they may have a long and/or complicated recovery or to take it as it comes?

 

The team is looking at ‘tone’ as well. It has changed, perhaps due to social media, perhaps societal changes...we don’t know either, but we are experiencing a high incidence of uncalled-for and unsupportive posts. They don’t all come from the newbies, but some of the newbies will take on the tone they are receiving from established members.

 

This is a good time to think about the tone we set.

 

Are we still this: http://mazeguy.net/romantic/grouphug.gif or are we this when supporting others? 

I’ve just come from a year away from the forum and I see a lot more of the latter than I used to.

 

Our purpose here is support.

 

http://mazeguy.net/romantic/grouphug.gif

 

Since you asked, I believe everyone should know right off the bat that benzo dependent people are likely to have long and difficult symptoms when they start to withdraw.

 

It's called informed consent and IMHO truthfulness is the right thing to do.

 

Except this is not always true.

[[...]]

Cookie, great post, it doesn't get more authentic than that! 

 

Fi, I like "indefinite" too.

 

I don't know that anyone can argue that what we say here and how we say it matters (and I'm far from a saint in the tone dept.) but I do find on BB there's far more importance (and policing) placed on the "how" than the "what", i.e. tone vs. context.  And that I do not agree with one bit.  If I were walking blindfolded headed straight for the edge of a cliff, it goes without saying I'd much rather someone yell at me and try and yank me to safety, as opposed to them keep whispering soft, gentle, sweet nothings in my ear as I slowly inched my way closer and closer to the cliff edge.

 

 

 

I feel that I should try to be as encouraging and positive as possible with each of my posts.  That doesn't mean withholding the truth, but it might mean choosing words with a deliberate compassionate intention of giving hope/strength or at least sympathy/consolation.

 

 

What about those who do withhold the truth and post fake, fabricated and intentionally misleading stories and "information" all over the forum?  BB has no rules against this, unfortunately, but I personally find this behavior the most offensive and abhorrent of all.

[[lo...]]

 

People should be allowed to BE WHOEVER THEY ARE as long as they aren't breaking forum rules.  But you all want to institute more rules on top of the rules.  As a life long anti-authoritarian, this 'triggered' (HAHAHAHAH) me. 

 

 

I agree that we should be allowed to be who we are, and this is all the more important after years of being chemically altered by drugs. Having exactly the same conversation on Twitter at the present time. 

[[pi...]]

Cookie, great post, it doesn't get more authentic than that! 

 

Fi, I like "indefinite" too.

 

I don't know that anyone can argue that what we say here and how we say it matters (and I'm far from a saint in the tone dept.) but I do find on BB there's far more importance (and policing) placed on the "how" than the "what", i.e. tone vs. context.  And that I do not agree with one bit.  If I were walking blindfolded headed straight for the edge of a cliff, it goes without saying I'd much rather someone yell at me and try and yank me to safety, as opposed to them keep whispering soft, gentle, sweet nothings in my ear as I slowly inched my way closer and closer to the cliff edge.

 

 

 

I feel that I should try to be as encouraging and positive as possible with each of my posts.  That doesn't mean withholding the truth, but it might mean choosing words with a deliberate compassionate intention of giving hope/strength or at least sympathy/consolation.

 

 

What about those who do withhold the truth and post fake, fabricated and intentionally misleading stories and "information" all over the forum?  BB has no rules against this, unfortunately, but I personally find this behavior the most offensive and abhorrent of all.

 

Well, BB does have rules and guidelines and we do our best to make certain that members follow them.  It is not productive, nor is it proper to make a blanket statement like this with no examples of what you consider to be 'misleading'. As a peer support forum, no one is considered an expert.  Each person will and can share their experience and as well as the reality of their situation.

 

What you call abhorrent and offensive should be reported to the team. We would assess the issue to see if moderation is necessary.

 

pianogirl

[[Zu...]]

Interesting topic of discussion. As a new member still figuring out the do and don'ts of a support forum (this is the first one I've ever been on) I'd like to give my perspective of how BB has affected me since coming here.

 

Not only 3 months ago, I was a perfectly functional adult taking my 1mg of xanax daily without worries or fears about it. I was happy because I thought xanax was my friend, quietly helping me to live life without worries. I have done so for 8 years roughly.

 

Then came the first panic attacks I've had in a very long time. I called the doctor, was told to go to the hospital to make sure I was healthy, and after the all clear was given a prescription for .75mg a day by the hospital. I thought to myself "well, if xanax isn't working anymore and taking more is the only way I can make this go away, I think I'd rather just learn to live without my crutch." So started my week long taper. I went to the doctor for a follow up a few days later and having panic/thyroid/HBP symptoms. After they drew blood the doctor came in and told me he thinks all of this is just my anxiety ramping up, and to take the xanax as needed because they are very addictive. Then a lightbulb went off in my head. I was physically dependent.

 

After a few more days, knowing what was going on, I began looking online for ANY help I could, looking for a way out. I am now getting anxiety because the thought of being addicted to a pharmaceutical both disgusts and terrifies me. I never was the person who thought I was having a drug problem because all my life xanax was considered safe.

 

Moving onto my experience here after laying the groundwork for moving forward. I decided to join BB in preparation for wanting to withdrawl. I've learned a lot about it, more than I ever could using google and the 1000s of medical detox ads. My overall experience on BB has been positive, I love the success stories, I love the benzo free celebrations and I love helping people (though I can only regurgitate what I've recently learned from other members, so I probably shouldn't help anyone other than positive vibes). The dark side of BB however, is the grim reality that it paints a picture that recovery, even though it is 100% possible, is unlikely.

 

Now I'm not saying there isn't plenty of evidence showing otherwise, but my brain is latching onto the single most important fact, I am about to embark on a journey that is going to crumble me inside, and it is up to me to cope with that. It's going to be a long journey of pure misery with no guarantee that I will ever feel normal again, and I think that fact scares me more than anything. If I felt that miserable on a 25% reduction that I still haven't recovered from, what was going completely off xanax going to do to me. Should I even do it and just live my life expecting the worst when I am much other (and selfishly hoping someone manages to find a way to correct what the xanax is doing to my brain).

 

BB is a wonderful place, but I've always been one of those glass half empty types. I find hope and fear here and it has consumed my life. Sometimes I wonder if it was the right choice to come here as I do better being ignorant of things. This bothers me so much that all I can think and dream about is having to go through the withdrawls. I am so scared to do it and that is my biggest hurdle.

 

So for people like me, seeing hope is what helps us. As mentioned before positivity can do wonders for recovery, but after seeing the worst of what I could possibly go through, maybe for the next 10 years of my life, I am asking the question. Is it worth it? Is it worth losing years of my life long after stopping benzodiazepines, or should I just give up and have comfortable life for as long as I have remaining on planet earth. I can't even answer that question.

 

In short, I love this community. Nobody else understands what's going through my head, and I know I have to take the good and the bad, such is life. However I have to agree. If this place was nothing but doom and gloom, I would likely just leave it forever. I don't want to discredit anyones suffering looking for help, but this is a support forum. It has good sides and bad sides, both of which I think need to be validated.