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


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For those of us in Benzo world, hope is oxygen. Hope is what makes us sign up to fight another five minutes, another hour, another day. We don’t know when our individual wars will end, but we have to believe that they will. There is a fine line between the right to speak ones truth and the rights of others to make it safely to the other side. This forum is a serious place. Lives are in all our hands. We are not social media. Arguments about whether or not everyone heals are not the same as the political ranting back and forth on Twitter. There are consequences. If you have had the experience of responding to a member in crisis, I think you will agree that this type of conversation can be very dangerous. We all have fears, and do need to express them and ask for support. But, we cannot speak about our fears as if they were facts. I have been a member since summer 2018. Over the past few months, I have noticed more and more posts that begin with a Doomesday thesis statement, followed by cherry picked and questionable supporting evidence. If someone is claiming expertise on magnesium, well, we will survive. What I am talking about is the kind of statement that kills hope. Not everybody heals, permanent damage, Ashton said so (read that more carefully). Someone is reading what we write. We don’t know who they are, or what they are facing. Please, when you post about those fears that plague us all, choose your words with them in mind. It is so much safer, and honest, to say that you are afraid that not everyone heals, rather than that you have concluded. We all are good people and no one wants to do harm. I am proud to be a member of this community. And, I am so very grateful to all of you. Espy
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I literally just edited out something I had posted right after reading this because what I had to say was just so morbid. And so unhelpful. Thank you for the reminder of others feelings, Espy. It's hard to know the line.
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I think hope is important, but not based on claims. Because then hope becomes a balloon filled up only with air, and one day it will be dead. I prefer to support with the good things I have learned the last 8 years (5 years taper + 3 years med-free), like that we never know, that there is this factor X, which can be positive for us. Or I mention strategies and learnings, articles, studies. But I do not lie when it comes to things which did not get better, because it is important, in my eyes, that we do not do the same things doctors do: Saying you will be fine, just do this or that or nothing.

 

The most important thing for me is, when people come to BenzoBuddies:

Inform yourselves and learn how to deal with information. Find your own way to handle information and find your own way how to live life even in horrible times. Learn from people who have already done that, or from even sicker people who have to deal with a disease for their hole life, cause they are wise in it and the real heroes. And also learn a proper conversation, democracy of opinions and tolerance.

And sometimes, appreciate that things trigger you. Why? Cause you will learn. Either to not open topics which might trigger you, or to decide will I wonder about this information or not.

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Quietquiet.. I read your post before you deleted it.  It's totally fine, lovie.  I responded, too.

 

About hope:

 

It's more than hope.  It is belief.  What we believe matters.  It matters more than anything, in my old lady opinion.  Belief is the reason that a double blind protocol had to be established with scientific research.  Researchers began to see that what they 'believed' would happen did, in fact, happen far outside statistical norms.  I'd talk about quantum theory here but our eyes would glaze over with boredom.

 

So, we have to BELIEVE in our eventual return to full health.  We hold on to that like the lifeline that it is.  How do we do that?  I think it's helpful to see that others have gone before us and returned to their true self.  I wish I'd had that when I went thru this hell.  But.. I didn't have you guys.

 

Yes, of course, post about everything you are going thru.  It helps sooo much if you know that someone else has been there,... or even if someone else is listening.  But, find your hope, lovies.  Hug it to your heart and hold on tight.  I have seen so much compassion on this site.  Keep up the great work.

 

Libs

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For those of us in Benzo world, hope is oxygen. Hope is what makes us sign up to fight another five minutes, another hour, another day. We don’t know when our individual wars will end, but we have to believe that they will. There is a fine line between the right to speak ones truth and the rights of others to make it safely to the other side. This forum is a serious place. Lives are in all our hands. We are not social media. Arguments about whether or not everyone heals are not the same as the political ranting back and forth on Twitter. There are consequences. If you have had the experience of responding to a member in crisis, I think you will agree that this type of conversation can be very dangerous. We all have fears, and do need to express them and ask for support. But, we cannot speak about our fears as if they were facts. I have been a member since summer 2018. Over the past few months, I have noticed more and more posts that begin with a Doomesday thesis statement, followed by cherry picked and questionable supporting evidence. If someone is claiming expertise on magnesium, well, we will survive. What I am talking about is the kind of statement that kills hope. Not everybody heals, permanent damage, Ashton said so (read that more carefully). Someone is reading what we write. We don’t know who they are, or what they are facing. Please, when you post about those fears that plague us all, choose your words with them in mind. It is so much safer, and honest, to say that you are afraid that not everyone heals, rather than that you have concluded. We all are good people and no one wants to do harm. I am proud to be a member of this community. And, I am so very grateful to all of you. Espy

 

That was a great post Espy, wonderfully stated.  Cousin Mary 💜💜💜

 

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I literally just edited out something I had posted right after reading this because what I had to say was just so morbid. And so unhelpful. Thank you for the reminder of others feelings, Espy. It's hard to know the line.

 

QQ, your post was very heartfelt, it is hard to know the line, but you quickly realized it when you saw it.  :):thumbsup:  Mary

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This post really bothers me.

 

As a protracted person (apparently second class and *scary*) the truth, while sometimes scary, is what I'm most interested in.

 

People are suffering in some cases for years.  Do not those people deserve support too?  Can you not wrap your mind around being this sick for this long challenges any thoughts of 'hope'???  I totally agree with what Marigold said.

 

I feel this is just more silencing by people who want to wield their power for their own benefit.

 

This is a diverse 'community' and as long are folks are speaking from their experiences and hearts, who are you to insist on 'correct content'?

 

It's not just about you.

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[cd...]

This topic has been on my mind for some time, mostly because of my own issues of bwd. I've had 2 strokes as a result of bwd, one recently where I've lost 80% of my vision and both verified by Dr's that bwd has caused them. I feel if i post my experience it could be triggering for people and I've even thought of deleting my sig for this reason. But this alienates and isolates me and puts my truth under the rug. I try hard not to mention it in my posts but sometimes it's necessary. I feel like a leper in many ways.

 

I do think Espy is absolutely right in what she's saying but Cookie is right too and  at what point does the line get crossed? I also think that this forum is made up of people who are in the biggest horror show on earth, if we have to sugar coat that then the forum loses its purpose imo.

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I have made the experience that the ones who suffered much more than I did - gave me more hope, than others, telling me, it will all be over after the first year.

 

Its about what do I want to hear?

If I want to hear that withdrawal will end soon and will not last forever, anything else will scare me and kill my hope.

If I want to hear different experiences and how people deal with it and cope, and learn new strategies or get an impulse for my own life - then my hope will never die, it will be a candle which I can relight even if it was gone for a minute.

 

That is what I wanted to say - and with that in mind the hole debate of will we heal, will we all heal, shall we talk about the ones who do not heal and so on is not necessary.

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Quote from Marigold

 

"If I want to hear different experiences and how people deal with it and cope, and learn new strategies or get an impulse for my own life - then my hope will never die, it will be a candle which I can relight even if it was gone for a minute.

 

That is what I wanted to say - and with that in mind the hole debate of will we heal, will we all heal, shall we talk about the ones who do not heal and so on is not necessary."

 

I think we can all agree with that Marigold  :smitten: :smitten:

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For those of us in Benzo world, hope is oxygen. Hope is what makes us sign up to fight another five minutes, another hour, another day. We don’t know when our individual wars will end, but we have to believe that they will. There is a fine line between the right to speak ones truth and the rights of others to make it safely to the other side. This forum is a serious place. Lives are in all our hands. We are not social media. Arguments about whether or not everyone heals are not the same as the political ranting back and forth on Twitter. There are consequences. If you have had the experience of responding to a member in crisis, I think you will agree that this type of conversation can be very dangerous. We all have fears, and do need to express them and ask for support. But, we cannot speak about our fears as if they were facts. I have been a member since summer 2018. Over the past few months, I have noticed more and more posts that begin with a Doomesday thesis statement, followed by cherry picked and questionable supporting evidence. If someone is claiming expertise on magnesium, well, we will survive. What I am talking about is the kind of statement that kills hope. Not everybody heals, permanent damage, Ashton said so (read that more carefully). Someone is reading what we write. We don’t know who they are, or what they are facing. Please, when you post about those fears that plague us all, choose your words with them in mind. It is so much safer, and honest, to say that you are afraid that not everyone heals, rather than that you have concluded. We all are good people and no one wants to do harm. I am proud to be a member of this community. And, I am so very grateful to all of you. Espy

 

Espy, this is a really wonderful post to read tonight. I too have been concerned about a strange change in mood I sense on BB perhaps in the last year. It feels as if we are losing faith in what we read on the forum. It seems we have moved off the basic principals OF this great forum. Many people seem to have lost their manners, their sense of caring for others who might just feel WORSE than you. Criticizing or making nasty comments to someone you do not agree with is NOT a BB thing. None of us will agree on everything! People are allowed their opinions and if you done care for them click off and go somewhere else.

When I first stumbled onto BB back in 2012 I was a total wreck of a woman, I weighted 85 lbs, I had been forced to go into a "rehab" for WHAT? I don't know. All they did was confine me. I wasn't given meds, wasn't advised on what was going on, and no one every ASKED me what I felt or thought! I was utterly relieved when I was abruptly discharged on the 4th day and sent home in full blown wd, hallucinating with all five senses and  paranoid and crazy as a bat in hell. I can laugh about that now but back then, no way. I was utterly terrified. When I managed (after many wrong turns) to find BB my world began to turn around, slowly but surely. I got my REAL education about benzos here. It was difficult to figure it all out and I still don't know some stuff. But I survived, and here I am now, fully healed, healthier than I have been in many years. No longer anxious or depressed. Benzos caused that! Isnt that terrible? How come this old nurse did not know this stuff? Horrifying to me.

What I loved about BB was the non judgemental support I got. Yes, when I first joined, CT people were sort of frowned upon, looked on as maybe "street addicts" and "really addicted" people. Addiction IS addiction even if your drugs were legally prescribed. I ignored that stuff and focused on learning what I cold do or try to relieve my many ugly symptoms. I got SO much wonderful suggestions here, things I STILL use if needed to handle ordinary stress.

Please, people, treat each other gently and kindly even if you do not agree on something. NO ONE knows everything about benzos. We all just try to guess and deal with the results of taking these darn drugs.

Bb should be a safe place for those in big trouble. Lets dedicate ourselves to THAT.

east

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Espy, more people should read this thread. You hit it right on, lady. The Doomsday stuff is such a huge error for people to make. If all you do is brood about it and feel angry, scared, helpless, you will NOT heal as well as someone who forces themselves to remain optimistic no matter what. Call it faking, call it whatever you like, but this stuff really does work and I am living proof of that. While ON benzos I slowly became negative, angry, lost, depressed and ore anxious. Because I didn't know benzos can DO that I assumed I had mental health issues. My self esteem slowly went downhill and so did my overall health. Turned out it was all benzos. Amen to that.

Here on BB it is so important that we all try to upport each other, even if we don't agree on everything. You have a right to YOUR opinions, so does Espey, and so do I. They ARE just opinions, not written in stone.

If you frequently post really negative stuff ('swe never really heal' etc) you are doing a huge disservice to yourself and many others here. The brain in BWD (or ON benzos) is not a fully functional brain. It tends to be highly suggestible and when one reads some "doomsday" post, it sets in motion all the stress chemicals, hormones, etc, in a reaction to something scary. Please try NOT to frighten your fellow sufferers, guys. ALL of you are decent people, caught in the throes of something you never knew cold occur. Well it can and sometimes does. Let your "good person" light shine out, not your sad negative one.

east

Wish I had thumbs up emoticons but I haven't for several years. Weird.

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Espy, more people should read this thread. You hit it right on, lady. The Doomsday stuff is such a huge error for people to make. If all you do is brood about it and feel angry, scared, helpless, you will NOT heal as well as someone who forces themselves to remain optimistic no matter what. Call it faking, call it whatever you like, but this stuff really does work and I am living proof of that. While ON benzos I slowly became negative, angry, lost, depressed and ore anxious. Because I didn't know benzos can DO that I assumed I had mental health issues. My self esteem slowly went downhill and so did my overall health. Turned out it was all benzos. Amen to that.

Here on BB it is so important that we all try to upport each other, even if we don't agree on everything. You have a right to YOUR opinions, so does Espey, and so do I. They ARE just opinions, not written in stone.

If you frequently post really negative stuff ('swe never really heal' etc) you are doing a huge disservice to yourself and many others here. The brain in BWD (or ON benzos) is not a fully functional brain. It tends to be highly suggestible and when one reads some "doomsday" post, it sets in motion all the stress chemicals, hormones, etc, in a reaction to something scary. Please try NOT to frighten your fellow sufferers, guys. ALL of you are decent people, caught in the throes of something you never knew cold occur. Well it can and sometimes does. Let your "good person" light shine out, not your sad negative one.

east

Wish I had thumbs up emoticons but I haven't for several years. Weird.

 

:thumbsup: :thumbsup:, there ya go east  :D

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It's a really different experience when someone recovers before they become protracted, what do you all suggest we do when we are years out? I'm curious. Also, what should I do about the fact that I feel benzodiazepines gave me cancer?

 

I'm just wondering, I remember years ago I didn't see near the amount of member efforts to police other's ability to express themselves fully.

 

Maybe just each to their own, let other people live the way they need to because there are people here who don't match the description of healing by a year, we do exist and some of us aren't perpetually peppy people. There are many kinds of people, histories and personalities here. Who's life is more valuable, a newcomer beginning a taper or someone who has been here for years and isn't recovered who gets blamed and disbelieved on levels and for time periods some of you have and will never experience?

 

That's great if you feel better after a year of being off, what about the rest of us? Some of us have what may actually be permanent damage and we get blamed for our conditions constantly, when in reality we all know that a drug should never have the power to inflict disabling and debilitating symptoms for years.

 

What some of us feel is attack is what other's feel is defense for our even more marginalized conditions. While the OP has a good argument and makes sense in some of the things she is saying, and I have nothing against her, there are equally valid arguments for every stage of healing that would support the freedom of expression for any mood/thought/feeling and the free exchange of truthful and honest information and stories that may not fit neatly into making any sense as "fake it 'till you make it" sentiments. What some here find supportive language and posting, others find intensely aggressive, judgmental, assumptive, dismissive, prescriptive, divisive, controlling, marginalizing and arrogant.

 

The statement that "what we say here, and how we say it, matters" is certainly accurate but it applies both/in all ways.

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I doubt that I would have sounded "positive" summer before last when I decided to drink above the lethal limit of alcohol instead of posting for support, seeing as there is no support but BB for benzodiazepine withdrawal (I am not going to use FB or the like), because of the intensity and severity of my protracted symptoms.

 

Those symptoms flared before relapse, they flared before that night but I was protracted and I doubt I would have had the capacity to sound uplifting and "positive."

 

For the record, I don't even believe the words positive or negative have any meaning unless we are talking about protons or neutrons. The words "positive" and "negative" when used to describe human speech and behavior are intensely subjective, unscientific and wholly ineffective and meaningless in my opinion. If any true depth in application of thought is applied to these ridiculous terms in relation to human expression and experience, nothing at all of any value or in terms of realistic and logically sound and accurate worth could be practically adapted, surmised or found defensible. There are simply too many  layers of complexity in the human experience and human psychology and circumstances, to deem or judge  someone or something they say or do as "positive" or "negative.” To truly be capable of judging one would need to be omnipresent, omnipotent and omniscient.

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Very interesting discussion.  I can see both sides. 

 

Here's the question that I have:  If I am the sum total of ALL my experiences to date in my life including benzos.. and there is no time frame for what comes after benzo withdrawals.. how do I assign something to a long-term or protracted outcome?  For instance, just in the last six months I have found it almost impossible to sleep during the night.. BUT I sleep okay in the day.  I think that's called cicada rhythm? 

 

My husband has it now, too.  He was never on benzos.  He just likes sleeping with me.  (thank goodness!)  I know this seems like a minor thing to some.. and it is minor in my life.  But, still.. it is a change from before benzos.  I've had difficulty with sleep all my adult life, long before the Xanax.  During withdrawals, I went from the maybe six hours a night to no sleep.. sometimes for days.

 

Soo now I sleep in the day.  Big deal.. so what.  Right?  And rather than accept it as a protracted outcome and blame it on the benzo... I think it's maybe just me.  The me that's always been.

 

So.. my uninformed question is:  Is it called protracted if it has a debilitated effect on your life?  Is it something you never experienced before benzos?  And why should I talk about it as if it was a longterm problem for me?  Because it really isn't.  I think it's probably just me. 

 

Forgive my stupidity, please.  It really is an effort to understand. 

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The spirit of hope is good for us all.  I would think it is especially needed for those whose struggles have been the longest and hardest.
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Many people seem to have lost their manners, their sense of caring for others who might just feel WORSE than you.

 

Where are the manners and caring for people who have been dealing with painful, debilitating symptoms for much LONGER than others? This works both ways.

 

If you are in the unfortunate position of still being sick after a few years off you have to deal with the added insult of denial coming directly from the only source of support you have- the benzo community. Then on top of that you are made to feel like you need to shut up or go away because you are scaring people.

 

Imagine how that feels.

 

People are allowed their opinions and if you done care for them click off and go somewhere else.

 

Except when your opinions are scary?

 

When I managed (after many wrong turns) to find BB my world began to turn around, slowly but surely. I got my REAL education about benzos here.

 

A "real" education about benzos includes the possibility of protracted symptoms and some other things that I won't mention because they might be considered "too scary".

 

There are people on the protracted board who are very upset because they feel like they have been lied to or misled about the possible protracted nature of this illness. They feel like they made poor decisions based upon the false hope that everyone heals within a year or two, or whatever.

 

Whenever this subject comes up another thing that is never mentioned is the fact that if we sugarcoat the truth about these drugs that's just more people who will never know how bad it can be when they are first prescribed these drugs. If the public truly understood what these drugs can do to the human body prescriptions would undoubtedly plummet and the problem would be mostly solved.

 

If all you do is brood about it and feel angry, scared, helpless, you will NOT heal as well as someone who forces themselves to remain optimistic no matter what. Call it faking, call it whatever you like, but this stuff really does work and I am living proof of that.

 

This is easy to say when you are completely healed.

 

Here on BB it is so important that we all try to upport each other, even if we don't agree on everything. You have a right to YOUR opinions, so does Espey, and so do I. They ARE just opinions, not written in stone.

 

The things is, this thread seems to be about people not having the right to express certain opinions or even lay out facts, if they are deemed to be triggering by some.

 

 

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IDK but I have a sense that the OP is talking about people who are creating unnecessary drama about this dramatic situation, not trying to tell us how to speak when we talk about how we're doing.

 

There are always going to be people who have a need to dramatize which is ridiculous of course because this situation requires no added drama.  I've seen people screaming and posting and posting and screaming and hollering since forever.  It's just how those people communicate and nothing we can do about it.  It is their choice to do what they do.  Unfortunately for them, they will be avoided because that behaviour just isn't trustworthy.  Most folks are working hard to maintain calm and dignity in this horribly stressful situation and I appreciate that the majority are like that.

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Many people seem to have lost their manners, their sense of caring for others who might just feel WORSE than you.

 

Where are the manners and caring for people who have been dealing with painful, debilitating symptoms for much LONGER than others? This works both ways.

 

If you are in the unfortunate position of still being sick after a few years off you have to deal with the added insult of denial coming directly from the only source of support you have- the benzo community. Then on top of that you are made to feel like you need to shut up or go away because you are scaring people.

 

Imagine how that feels.

 

People are allowed their opinions and if you done care for them click off and go somewhere else.

 

Except when your opinions are scary?

 

When I managed (after many wrong turns) to find BB my world began to turn around, slowly but surely. I got my REAL education about benzos here.

 

A "real" education about benzos includes the possibility of protracted symptoms and some other things that I won't mention because they might be considered "too scary".

 

There are people on the protracted board who are very upset because they feel like they have been lied to or misled about the possible protracted nature of this illness. They feel like they made poor decisions based upon the false hope that everyone heals within a year or two, or whatever.

 

Whenever this subject comes up another thing that is never mentioned is the fact that if we sugarcoat the truth about these drugs that's just more people who will never know how bad it can be when they are first prescribed these drugs. If the public truly understood what these drugs can do to the human body prescriptions would undoubtedly plummet and the problem would be mostly solved.

 

If all you do is brood about it and feel angry, scared, helpless, you will NOT heal as well as someone who forces themselves to remain optimistic no matter what. Call it faking, call it whatever you like, but this stuff really does work and I am living proof of that.

 

This is easy to say when you are completely healed.

 

Here on BB it is so important that we all try to upport each other, even if we don't agree on everything. You have a right to YOUR opinions, so does Espey, and so do I. They ARE just opinions, not written in stone.

 

The things is, this thread seems to be about people not having the right to express certain opinions or even lay out facts, if they are deemed to be triggering by some.

 

:thumbsup: :thumbsup:

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I did not want to write that post. Something happened that made me do it, even knowing it might be misinterpreted. The posts that concerned me were Not made by protracted members. They were made by relative newcomers. They were not about terrible suffering or long healing time. They were opinions disguised as fact. That is all I was talking about. If I invalidated or attempted to silence anyone, then I failed in my attempt to try to protect us all. I know how much people have lost to this nightmare. I lost everything I truly valued 17 months ago. Why would I not believe you? Espy
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I did not want to write that post. Something happened that made me do it, even knowing it might be misinterpreted. The posts that concerned me were Not made by protracted members. They were made by relative newcomers. They were not about terrible suffering or long healing time. They were opinions disguised as fact. That is all I was talking about. If I invalidated or attempted to silence anyone, then I failed in my attempt to try to protect us all. I know how much people have lost to this nightmare. I lost everything I truly valued 17 months ago. Why would I not believe you? Espy

 

I thought you were very clear Espy. 

 

Opinions disguised as fact can, and has been for me, scary at times.  I know you have and are going through your own struggle to heal. 

 

Keep sharing your thoughts and I know you believe everyone else is allowed to as well. 

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