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Long Haulers

What on earth is happening lately??


[jo...]

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[jo...]

It seems like every platform I’m on lately (including this group), whether it be trying to distract or seek out some hope, there is a group of people writing ridiculously negative, coach-bashing, fear-mongering, terrifying, scary comments and posts. 
 

I am all for people being able to express their fears and share their story without judgement or invalidation, no matter how far out they are. However, to go out of your way to bully people about believing that things can get better, who are oftentimes EXTREMELY fragile and holding onto tiny shreds of hope, is downright disgusting.
 

It seems like there is a group of people at the moment, just terrorising people online. I’ve actually woken up today to personal messages on my personal social media videos telling me we are all irreversibly brain damaged and have no hope. Imagine if I was having a day with a ton of SI, this could send me or anyone else for that matter completely over the edge. It’s about the third or fourth time I’ve been seriously triggered in the last week. This is after seeing people write the same kind of things in this group all week, and on the comments sections on various YouTube and Facebook posts that are trying to offer people a slither of comfort. 
 

It’s okay to be scared about not healing. WE ALL ARE. But to go onto sites, posts and peoples personal social media, and purposely try to freak them out or trigger their nervous systems is downright criminal. It needs to stop and be called out. I don’t care if you think the coaches saying we all heal is BS. Keep it to yourself instead of traumatising everybody else. 

Edited by [jo...]
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[Ch...]

100% agree. I've pretty much stopped visiting this hellsite for the most part because it's an angry cesspool of negativity. I've been on here since 2016, longer than most of the people complaining, and it's never been this toxic. It's the opposite of what I need and probably isn't really helping them, either. And having been at this for some time, I have several friends who are no longer here on earth because they were scared and because of crap like I've read lately. I know it sends people over the edge. I know that half the calls the coaches get are from people freaking out from reading this crap. It's next level selfish and sh*tty to repeatedly say certain things, knowing it will make people give up. How dare these people intentionally try and steal people's hope. 

Honestly, it makes me really understand why people get the hell out of here and don't leave success stories here a lot of the time. 

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[Na...]

People get worn down after years of dealing with this stuff. It's understandable that a group for people with a long standing illness will have a certain amount of negativity.

However .... the negativity doesn't help us. Just the opposite. Still you have to let it out now and then. 

I would encourage people though that if you can't be positive (which is really hard to muster sometimes) maybe at least try to limit your negativity. 

Don't feel bad, my wife has to tell me the same thing now and then. :classic_wink:

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[jo...]
Posted (edited)

@[Na...] negativity I completely understand. I have many negative days myself and fears about not healing. Hopelessness, powerlessness, the works. As any of us protracted folks would. I am actually really not one for the toxic posivity some people try and force on us either! 
 

However, the things I’ve seen here lately and on FB and on my own personal videos are things like (paraphrasing)

- this is permanent we don’t heal 

- ask any doctor and they’ll tell you if you haven’t healed yet you won’t 

- this is irreversible brain damage 

- stop listening to the coaches with their fake hope 

- protracted people back in the day are all permanently disabled in wheelchairs 

you get the picture! Totally unhelpful, scary, triggering and fear-mongering behaviour. I’m also not proclaiming that everyone heals or that someone who’s 15 years off shouldn’t feel safe or comfortable here sharing their story without being gaslit. But purposely triggering people with terrifying statements like the above is unhelpful and dangerous 

I felt safe and seen here for a long time, and lately I haven’t been feeling that and have actively had to avoid the group to protect myself. I started my social media for similar reasons and now I might have to remove all my videos to also stop being triggered. We need community in this  

Also, we all need reassurance and reminding. Nothing to feel bad about at all 😌

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[ti...]

I'm not really one for policing what other people post on this group. We've all been badly damaged here.

 

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[Ch...]
26 minutes ago, [[t...] said:

I'm not really one for policing what other people post on this group. We've all been badly damaged here.

Well, things you say affect other people. The vast majority of people in the groups don't want to read that stuff. It might make you feel better, but it makes people panic. We all have moments of despair, but most of us aren't so unkind as to write everything we're thinking in a given moment. I've been around here a lot longer than you and had friends kill themselves partly because of reading posts like yours. I wish y'all would take this stuff private, where you can say this stuff all day long without dragging everyone down with you. No one needs it. It does nothing for anyone, not even you. And in my experience, it's not accurate, anyway. It just takes some of us a long time. 

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[jo...]
1 hour ago, [[t...] said:

I'm not really one for policing what other people post on this group. We've all been badly damaged here.

 

32 minutes ago, [[C...] said:

Well, things you say affect other people. The vast majority of people in the groups don't want to read that stuff. It might make you feel better, but it makes people panic. We all have moments of despair, but most of us aren't so unkind as to write everything we're thinking in a given moment. I've been around here a lot longer than you and had friends kill themselves partly because of reading posts like yours. I wish y'all would take this stuff private, where you can say this stuff all day long without dragging everyone down with you. No one needs it. It does nothing for anyone, not even you. And in my experience, it's not accurate, anyway. It just takes some of us a long time. 

For me it’s also proclaiming things like they’re fact. Instead of saying “I’m really scared I won’t heal, what if I’m permanent” which is completely understandable, as most of us feel this way at times, including me.

The proclamations of “I’m permanent, ask any doctor, if you haven’t healed by now you won’t”. When I am the same time period out as that person and I immediately take that on is very triggering and unfair 

I find it interesting too that these people don’t like the statement “we all heal”. Yet, are more than happy to sling around things like “this is permanent” and “if you haven’t healed by now you won’t”.  Considering the fact also, that there’s thousands of success stories here that prove that is indeed very much untrue. 

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[Sc...]
33 minutes ago, [[j...] said:

For me it’s also proclaiming things like they’re fact. Instead of saying “I’m really scared I won’t heal, what if I’m permanent” which is completely understandable, as most of us feel this way at times, including me.

The proclamations of “I’m permanent, ask any doctor, if you haven’t healed by now you won’t”. When I am the same time period out as that person and I immediately take that on is very triggering and unfair 

I find it interesting too that these people don’t like the statement “we all heal”. Yet, are more than happy to sling around things like “this is permanent” and “if you haven’t healed by now you won’t”.  Considering the fact also, that there’s thousands of success stories here that prove that is indeed very much untrue. 

When many years go by with the same or worsening symptoms one has to wonder and come to reality that if a neurological problem caused by the drugs doesn't heal in a few months up to 2 years its most likely permanent. Regarding success stories everyone is different everyone has different drug history and symptoms and everyone has different bodies. What is factual when there is neurotoxicity it is permanent if it causes neurological symptoms. There is only symptom management.

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[jo...]

“If a neurological problem caused by the drugs doesn’t heal in a few months up to two years it’s most likely permanent” 

 

why is that your decided timeframe? Your body is healing every single minute you’re alive. It is always trying to reach equilibrium. Homeostasis is its natural resting place. It doesn’t get to two years and give up. Countless people have healed beyond two years. Some of us just taking longer for whatever reasons. Again spouting that if you don’t heal in two years it’s “probably permanent” is baseless and triggering. Just look at the hundreds if not thousands of success stories here of people who healed well beyond two years.

Yes we are all different, we all take a different amount of time to heal. Maybe some people don’t heal 100%. But what is healing to you? Healing to me is being functional again, living life, working, socialising, feeling safe in my own body. I might not ever heal 100%, maybe there will be some left over sxs, but if I heal enough to live then that’s enough for me, and that seems to be the outcome eventually for most people I’ve seen. Even if it takes longer for some of us protracted folk, I like to hold on to the fact that I’m not doomed and that this isn’t permanent 

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[Ch...]

That's bullshit. I'm almost as far out as you. I've had several friends who didn't have windows who just started to get better and are healed or mostly healed now. There are loads of success stories that tell the same story. Angie Peacock is a good example. She didn't have any windows and was on loads of meds and she is fully functional now and feeling way better. She jumped 6 months before I did. I've talked to other really protracted people who had similar shifts. Baylissa and Una and others with a whole lot more experience with protracted people than you have said the same thing. I don't really care how you feel about Baylissa, but I've found her to be credible and she's been an amazing support for me and a lot of other people. It never hurts to have hope, but it's a scummy thing to do to try and steal others'.

If you want to believe it's permanent, super. But you don't have to spread your poison to everyone else who is holding on by a thread. It's incredibly selfish and it makes suicidal people follow through. You've certainly been around long enough to know that's true. The fact that you do it anyway speaks volumes.

I think someday you'll heal, too. And you'll look back on all this stuff very differently.

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[ti...]
2 hours ago, [[C...] said:

The vast majority of people in the groups don't want to read that stuff.

Did you take a poll or something? Some people want nothing but positivity and thats fine. Some people believe they'll never heal and want to vent about that. I think that's ok too. 

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[Ch...]

I don't need to take a poll. I've seen numerous posts on several platforms lately referring to your selfish, callous diatribes. A lot of people were really upset. But you only care about yourself.

It's not ok. It's not ok to bait suicidal people with this crap. You've been told that's what is happening, but you are apparently unable to think about anyone's suffering but yours. And you're what...a couple years out? Give me a break. What you know and understand isn't nearly as much as you think. Early days to make these ignorant pronouncements.

No one expects positivity. But the never heal garbage is unnecessary and takes lives. If you were out farther and cared, maybe you would have lost friends, too. Maybe it would have been partly your fault. At least I can sleep at night knowing I didn't intentionally say things that caused someone to off themself. It's messed up.

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[jo...]
Posted (edited)
28 minutes ago, [[t...] said:

 

Edited by [jo...]
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[ti...]

 

12 minutes ago, [[C...] said:

I don't need to take a poll. I've seen numerous posts on several platforms lately referring to your selfish, callous diatribes. A lot of people were really upset. But you only care about yourself.

It's not ok. It's not ok to bait suicidal people with this crap. You've been told that's what is happening, but you are apparently unable to think about anyone's suffering but yours. And you're what...a couple years out? Give me a break. What you know and understand isn't nearly as much as you think. Early days to make these ignorant pronouncements.

No one expects positivity. But the never heal garbage is unnecessary and takes lives. If you were out farther and cared, maybe you would have lost friends, too. Maybe it would have been partly your fault. At least I can sleep at night knowing I didn't intentionally say things that caused someone to off themself. It's messed up.

Are you speaking directly about me? Because what you just wrote is really melodramatic and kind of unhinged to be honest. I haven't said anything other than I don't think everyone heals 100% and I think Baylissa is dishonest about that. I did have a doctor tell me that if I wasn't healed at 2-3 years the chances of healing would go down substantially and I believe that's probably correct. I don't think any of that is particularly shocking. 

If anyone thinks someone is spreading "poison" on the group or baiting anyone into suicide maybe they should take it up with the mods. 

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[Ch...]

I am really just done with this site. I just can't handle the negativity or the bullying. I've been on here a long time and it didn't used to be so bad. I'm not able to feel positive feelings, either, but this garbage makes things worse, even if I know it's BS. BB has caused more stress for me than any other forum. You get ripped for swearing, but it's perfectly permissable to tell everyone they won't heal. I used to know a lot of lovely people on here, but it feels really toxic now.

This is why protracted people aren't on here. I know a bunch of people who are mostly healed and haven't been on here in years. We leave because of this crap. Sometimes this community is just the worst. Bullying, symptom shaming, self-indulgent negative statements crafted to elicit a reaction in suffering people. I'm just so tired of it. 

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[jo...]
Posted (edited)

@[Ch...] I wouldn’t even engage. If unhinged is believing this isn’t permanent based on the thousands of testimonies, and not believing in triggering suicidal, vulnerable people unnecessarily. And the opposite of unhinged is relying on some random doctors who know nothing about BIND to dictate the duration of it and then tell other people they won’t heal. Then call me unhinged :D   

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[ti...]

All I'm saying is even the negative Nelly's deserve a place to vent their thoughts and opinions, and those opinions might be unpleasant to you. This IS the long haulers group after all. 

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[jo...]

@[ti...]you’re really not reading any of the replies and you’re totally missing the point. You’re creating your own narrative based on what you claim we’re saying. Which isn’t that you can’t be negative (I’ve now spelled this out multiple times, even telling you that I often believe I won’t heal). But it’s pointless going back and forth when you can’t even acknowledge what we’re actually talking about or show some empathy/understanding on the topic. I’ll be leaving it there 

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[ti...]
20 minutes ago, [[j...] said:

@[ti...]you’re really not reading any of the replies and you’re totally missing the point. You’re creating your own narrative based on what you claim we’re saying. Which isn’t that you can’t be negative (I’ve now spelled this out multiple times, even telling you that I often believe I won’t heal). But it’s pointless going back and forth when you can’t even acknowledge what we’re actually talking about or show some empathy/understanding on the topic. I’ll be leaving it there 

I agree that bullying people isn't cool, but don't think I've seen that in this group. I could be wrong though.

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[Sc...]

Why haven't i healed?. I am 11 years off with severe crushing tension on my head which has got worse over the years. I don't smoke don't do drugs eat well and take care of myself yet still have crushing tension that i cant function. This in my case is permanent neurological damage to the brain and nervous system caused by neurotoxicity of the drugs.

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[Up...]

Wow just wow! Popped on to check on a few friends.  Found this ?  This is supportive? This is okay to do to others?  Yah I won’t be back until this type of toxicity is taken care of.  Nobody needs this.  I believe those that are that far into a negative hole need to get into a good therapist and accept where you’re at with what you have.  As well as toxic positivity there is toxic negativity and I am no expert but this is toxic.  Try something different besides wallowing in this crap.   
 

 

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[Co...]

Hi all,

@[Na...] has already provided you all with some much needed perspective. I'll try to add a few specifics and thoughts which might help too.

First of all, BB tries its best to be a broad church for those dealing with problems caused by benzodiazepines. This requires us to make some compromises about the content we will allow, sometimes letting minor infractions of the rules go unchallenged, but also adding some restrictions for the good of the whole community.

Swearing:

The actual rule -

Quote

Please do not post profanity or disguised profanity at this forum.

Note how it is worded. We generally do not strictly enforce the rule. Moderators will make a judgement call, and there will be some variability in what various moderators find acceptable. (We are not too concerned about trying nail down full consistency in how this rule is enforced. Frankly, it is not worth the effort.) But we generally let minor infrequent profanity go unchallenged, and will sometimes let more serious (infrequent) examples go unchallenged depending upon the circumstances (if the member is particularly upset, for example). But the reality is that if we did not have the rule, a small number of members would habitually post profanity-laden content and many other members would find this unacceptable. Compromise is necessary.

Negative Content:

I posted about this just a few weeks ago. And @[Pa...] started thread about it last summer.

@[Pa...]'s thread:

Positivity:

We've had a few members in the past post about 'toxic positivity'. I am not at all a fan of the phrase. But we surely understand what it means. I touched upon this the post of mine I linked above. Sometimes members need to vent a bit (and this is OK within reasonable limits), and they might be looking for either reassurance or acknowledgment (or both). My advise is to respond in the way which seems most appropriate to the post.

Personal Comments:

Please avoid using personal comments when arguing with other members. Forcefully arguing your corner is generally fine - BB is a discussion space after all - but if it gets into name calling, it has gone too far. Even mild name calling works against constructive discourse.

The nature of Benzodiazepine Withdrawal:

The reality is that benzo use and withdrawal negatively affects how we interact with people. Most people here are not operating at their best and for very understandable reasons. But we all remain responsible for our actions. And how we interact with other members (who might well find even mild confrontation difficult) is important. Ultimately, although we understand that many members are impacted by benzodiazepine use or withdrawal and this sometimes negatively affects how they interact and behave, practical reality requires that members adhere to certain standards for the good of the wider community. We all sometimes need to compromise.

Do we all Heal?

There is no simple answer to this. It is not known (for certain) if benzodiazepine use causes permanent changes in some people. Practically, we do not know, for example, if an individual suffers from other medical or psychological problems which could be the cause of their problems. They could be a long time user of benzodiazepines and compare their benzodiazepine-free self to how they were, perhaps, 25 years earlier (before benzos) - comparing our older self with our younger self is not a good comparison. They could be traumatized by withdrawal, and this is the cause of their protracted difficulties. Irrespective, even if there are permanent changes for some people, this does not preclude improvement and better management of their symptoms.

Reports/Flagging:

If you feel that another member posts or responses are inappropriate, you should report them. We do not actively monitor content - we generally rely upon members to report problems. Whilst we do not wish to encourage frivolous reporting, if you feel a post is wrong for some reason, you should report it. (Click the 'meatball' menu (...) top-right of the offending post, select 'report', and add a comment.) We would rather have posts reported in error than problem posts going unreported.

Coaches:

I do not believe that coaches/counsellors should provide blanket 'everyone heals' messages. About a month ago, there was even a team discussion about how we should avoid doing this. Firstly, it is a trite message. Secondly, we do not know if it is true. If the client does not improve, this will eat away at trust. However, of course a counsellor should try to be a positive force in their client's life; and help them more forward and reframe their problems.

If your counsellor is an unqualified 'coach', I expect they will regularly fall into all kinds of traps. I strongly recommend that members do not make use of unqualified 'coaches'. And if you feel that your qualified counsellor is lacklustre in performance or is just not a good fit for you (it happens), find another one. A good counsellor (even if not a good fit for you) will understand this and (if possible) will even help you find someone else.

Finally:

Try to step back when you get into an argument at BB (or similar places). Most here are struggling, and we each have differing perspectives. Compromise, and understand that participating at and operating a support space like BB involves many compromises from all of us. BB is not my personal ideal of a discussion space either. Rather, the rules and policies reflect what I think is in the best interests of our wider membership. I must compromise too.

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[Ca...]
On 04/04/2024 at 21:07, [[j...] said:

@[Na...] negativity I completely understand. I have many negative days myself and fears about not healing. Hopelessness, powerlessness, the works. As any of us protracted folks would. I am actually really not one for the toxic posivity some people try and force on us either! 
 

However, the things I’ve seen here lately and on FB and on my own personal videos are things like (paraphrasing)

- this is permanent we don’t heal 

- ask any doctor and they’ll tell you if you haven’t healed yet you won’t 

- this is irreversible brain damage 

- stop listening to the coaches with their fake hope 

- protracted people back in the day are all permanently disabled in wheelchairs 

you get the picture! Totally unhelpful, scary, triggering and fear-mongering behaviour. I’m also not proclaiming that everyone heals or that someone who’s 15 years off shouldn’t feel safe or comfortable here sharing their story without being gaslit. But purposely triggering people with terrifying statements like the above is unhelpful and dangerous 

I felt safe and seen here for a long time, and lately I haven’t been feeling that and have actively had to avoid the group to protect myself. I started my social media for similar reasons and now I might have to remove all my videos to also stop being triggered. We need community in this  

Also, we all need reassurance and reminding. Nothing to feel bad about at all 😌

Sounds like you're siting statements to the negative as opposed to statements to the affirmative (you will heal vs you won't) type of thing. I would suggest we currently do not know either way. Everyone is different so how could we possibly know. On the plus side of it, I'm a survivor so far, which is considerable I would say but that's about it. Has been so many times I've seen something on here over the years, that I can really relate to. And I can empathize with them, which kind of puts a shot in the arm, so to speak. The really positive thing for me about it here is our relationships we form, going through this ordeal together. I think that's usually more the case than a more nefarious motive. But I don't get around much either!

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[co...]

Wow

I now remember why I left this place

The nerve of you all telling suffering people what they can and cannot say

10 years off for me and it appears to be PERMANENT DAMAGE to me...sorry you can't bear it

I HAVE TO

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[Co...]
14 minutes ago, [[c...] said:

Wow

I now remember why I left this place

The nerve of you all telling suffering people what they can and cannot say

10 years off for me and it appears to be PERMANENT DAMAGE to me...sorry you can't bear it

I HAVE TO

Would you say that you have improved over those ten years? I was in a very bad way for many years, but it was probably 8-10 years before I felt it was mostly resolved. And I would say that it has not entirely resolved for me now, even after more than 20 years. But I do not usually think about it anymore.

I cannot be 100% certain that any small(er) lingering effects are definitely due to benzodiazepine withdrawal. I think they are, but I am a lot older, with some other medical problems, so there should be some room for some doubt.

But, again, I do not generally think about it. I improved (a lot), even if it took a long time. And I also adjusted. And we all need to make adjustments over the years, benzos or not.

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