Negativity in the Long Hauler's Group

[[Na...]]

It's been noticed that the Long Hauler's Group has become more negative as of late. I've gotten a few PMs complaining about that and I don't disagree with the sentiment. Here's a reply I made earlier tonight to one of those emails:

 

There is an inherent conflict in the Long Hauler's Group - how do we have honesty about the reality that people are dealing with in their struggle with post benzo issues without things getting too negative?

I don't have an easy answer to this.

If I start censoring or shutting down people that are in despair then at some point I feel like I'm sugar coating the situation. On the other hand, all the negativity doesn't help anyone. 

I made a reply this evening in that thread to give my opinion, but it's just that - my opinion. I don't feel like I have any special insight.

The only thing I can do is to encourage people with a more positive outlook to make their voice heard. And I'll tell you from experience that if you try to convince others to be more positive you will find that your own positivity will increase as well.

I don't think there is a long term solution to this conflict in this particular group - I think it will always be here. You've got a lot of people here that have been ill a long time and long term illness breeds negativity. But I agree things have swung too far in a negative direction and that we all need to improve our outlook as best as we can.

I mean that part about there being an inherent struggle in this group. We want to be honest about what we are dealing with. And for some people what they are dealing with is not pretty at all. 

But, relentless negativity will only drag you and possibly others further down. It will help no one. In fact, right at this moment it's probably the worst thing you can possibly do. 

So what do I do? Do I start censoring the group to make this a "safe space"? That just isn't in my nature. I don't feel like that would be honest.

But, we are getting more negative than this group should be and I know that some people are hurting themselves with the negativity and probably hurting other members as well.

So I'm just going to ask everyone to try to curb their negative posts. It'll be better for all of us. I understand there will be times when we need to vent - but let's try to get out of the habit of relentless negativity. 

Feel free to talk about ideas or thoughts on this situation you might have in this thread.

 

 

[[de...]]

Sadly, the protracted group used to be a fairly safe place, but that is no longer the case for me.  Actually most of the negativity seems to be coming from people who are less than three years off. Anyway, I really don't want to say too much or the "Never Healers" will begin to weigh in with their unfounded and unscientific claims.   Good luck with this Nathan! 

[[ti...]]

3 hours ago, [[d...] said:

Sadly, the protracted group used to be a fairly safe place, but that is no longer the case for me.  Actually most of the negativity seems to be coming from people who are less than three years off. Anyway, I really don't want to say too much or the "Never Healers" will begin to weigh in with their ridiculous claims.   Good luck with this Nathan! 

I haven't seen too many people in the group claim that no one here is ever going to heal, and should a mod really be calling people who are obviously suffering mentally "ridiculous"? 

Edited April 9 by [ti...]

[[Ga...]]

I guess I am confused about one thing in particular; for those buddies who feel strongly and unequivocally that they will never heal and have given up hope, and who believe that the benzo coaches are only out to get money from them…..why are you still on benzo buddies?   I am not trying to be rude or unfeeling, but I am really puzzled as to why you continue signing in?  Just a simple question!

GG

[[de...]]

@[ti...] I am not going to get into a back and forth with you.   I changed the word from ridiculous to unfounded and unscientific.       Yes, I am a moderator, and I am also a fellow sufferer.   I am in my 49th month, and very symptomatic.    I believe without a doubt I will heal completely.   Is that misplaced belief?  Who knows, but for me it is better than walking around thinking I will never heal.    Will I be exactly as I was 4 plus years ago when I started this journey?   There is a good chance I will not.   I am that much older, I have some other medical things going on, etc.     Those who think they will never heal, will probably get exactly what they are looking for.  

[[Na...]]

So, my position is that people should be able to vent now and then. There has to be some honesty about this situation and the truth is that this situation really sucks.

That said - every single person here needs to think about the other people in this group. This is difficult when you're feeling so bad. I know I can get pretty focused on myself just because I'm paying so much attention to how lousy I'm feeling sometimes. But we need to consider how our posts impact the other members of the group. If you're in the group constantly posting "I'll never heal", "This will never end", "Abandon all hope ye who enter here", etc. etc. it's guaranteed that you are dragging down a lot of other people that are already in a bad situation. There are people here in a very fragile state. And I think no one here would ever want to be the person that influenced someone in a negative way. So think about that. Think about what you're saying and what it's doing to other people here.

If someone just becomes relentless with the negativity I will take steps to moderate that. If you see that occurring please drop me a PM and I'll look into it. 

So, please everyone be reasonable. I'm not asking anyone to put a happy face on a bad situation. But don't just keep beating the negative drum over and over again.

[[ti...]]

I don't blame people who have had the same symptoms day in day out for many years with zero improvements for feeling like they aren't going to heal. For saying that they won't heal. It gets to a point where you're weary of having hope. Hope almost feels silly. It's one thing if you get some windows or if your symptom/symptoms have improved even tiny bit over the years. It's easier to have hope and potentially see a light at the end of the tunnel if that's the case, but that isn't the case for everyone. Everyone here is in different situations. Different personality types. I don't look down on those people at all. 

But I do understand trying to keep a balance on the forum.

 

 

[[ti...]]

On 09/04/2024 at 14:14, [[G...] said:

I guess I am confused about one thing in particular; for those buddies who feel strongly and unequivocally that they will never heal and have given up hope, and who believe that the benzo coaches are only out to get money from them…..why are you still on benzo buddies?   I am not trying to be rude or unfeeling, but I am really puzzled as to why you continue signing in?  Just a simple question!

GG

I guessing because they're still suffering from BIND. What does the long haulers group have to do with benzo coaches?

[[Na...]]

22 minutes ago, [[t...] said:

I don't blame people who have had the same symptoms day in day out for many years with zero improvements for feeling like they aren't going to heal. For saying that they won't heal. It gets to a point where you're weary of having hope. Hope almost feels silly. It's one thing if you get some windows or if your symptom/symptoms have improved even tiny bit over the years. It's easier to have hope and potentially see a light at the end of the tunnel if that's the case, but that isn't the case for everyone. Everyone here is in different situations. Different personality types. I don't look down on those people at all. 

But I do understand trying to keep a balance on the forum.

I don't blame them either. It's entirely natural to feel like you're never get better with any prolonged illness. How could you not think that after so long?

But, if you're in the group constantly talking about how you'll never heal, what good are you doing? It's not helping you and it's certainly not helping the other members that are here. Particularly those new to the group.

On the other hand some would like to see this group turned into a safe space "where never is heard a discouraging word". We can't do that either because it denies the reality of what many are going through.

Like you say, it's got to be a balance. We can talk about the hard times and the difficulties. Have your vent now and then about how bad things are. But, just don't become a broken record.

[[Ga...]]

Tired girl I mentioned benzo coaches in response to many buddies lately trashing them along with their parroting words of negativity as regards healing!   That’s it in a nutshell!

[[ti...]]

 

 

5 hours ago, [[G...] said:

Tired girl I mentioned benzo coaches in response to many buddies lately trashing them along with their parroting words of negativity as regards healing!   That’s it in a nutshell!

I've really only seen posts saying that coaches shouldn't tell people that everyone will heal 100% no matter what. Which matches up with the sites stance on the matter. This is from the site admin.

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.

 

[[Ga...]]

Agreed…all I can muster today as I had an injury that has me now lying in bed for a couple of days!!!

[[mo...]]

Believing in healing is crucial. Part of me believes it which sometimes takes me by surprise - and then I feel grateful. Wish me luck dealing with breast surgery tomorrow. I'm really scared of losing control of the little bit I have left. Can't mention I already feel terrible and I must protect myself from the sometimes cold, callous remarks made by the medical profession. Hope I wasn't too negative here.

[[Na...]]

On 14/04/2024 at 16:28, [[m...] said:

Believing in healing is crucial. Part of me believes it which sometimes takes me by surprise - and then I feel grateful. Wish me luck dealing with breast surgery tomorrow. I'm really scared of losing control of the little bit I have left. Can't mention I already feel terrible and I must protect myself from the sometimes cold, callous remarks made by the medical profession. Hope I wasn't too negative here.

I'm shocked that you are doing as well as you are with all the things you're currently dealing with. You are an amazingly strong person.

I really take my hat of to you mowgli. 

[[Co...]]

On 14/04/2024 at 23:28, [[m...] said:

Believing in healing is crucial. Part of me believes it which sometimes takes me by surprise - and then I feel grateful. Wish me luck dealing with breast surgery tomorrow. I'm really scared of losing control of the little bit I have left. Can't mention I already feel terrible and I must protect myself from the sometimes cold, callous remarks made by the medical profession. Hope I wasn't too negative here.

Apologies, my response is a bit late - I have only just read your message. I hope the surgery went well for you yesterday.

[[mo...]]

Colin and Nathan

Thank you for your responses. Got through the surgery okay - now just dealing with my loss of something(s) else and the fact that there is something more my surgeon wants to talk to me about next week. Anyway my intake nurse in pre-op room took me seriously when I told her about my previous "addiction" to benzos and actually wrote it in my chart. Then the anesthesia person did not give me the xanax  she had in her pocket.

[[Co...]]

18 hours ago, [[m...] said:

Colin and Nathan

Thank you for your responses. Got through the surgery okay - now just dealing with my loss of something(s) else and the fact that there is something more my surgeon wants to talk to me about next week.

I am glad that the surgery went well for you.

18 hours ago, [[m...] said:

Anyway my intake nurse in pre-op room took me seriously when I told her about my previous "addiction" to benzos and actually wrote it in my chart. Then the anesthesia person did not give me the xanax  she had in her pocket.

Good. I am glad to hear that they followed your instructions. I am of the general opinion that one-off doses in these situations will have no lasting effects. But I surely understand the fear. I would not ordinarily take a benzodiazepine, but I had at least one dose administered to me a couple of years ago in medical emergency, and without ill-effect. But to be fair, it is over 20 years since I quit benzos, so there is that.

[[Ca...]]

On 14/04/2024 at 14:28, [[m...] said:

Believing in healing is crucial. Part of me believes it which sometimes takes me by surprise - and then I feel grateful. Wish me luck dealing with breast surgery tomorrow. I'm really scared of losing control of the little bit I have left. Can't mention I already feel terrible and I must protect myself from the sometimes cold, callous remarks made by the medical profession. Hope I wasn't too negative here.

Yeah, that's seriously rough going, so so sorry. My version of that story went down today, surgery on my broken ankle. I didn't do well at all. Was on a crying jag last night and today. My wife was out of town during the week and I honestly felt I was losing it. As did it feel like sanity was seriously falling before my eyes. But I stopped taking Baclofen and Seroquel. Gotta try, letting go of those and live a more civilized life of which I've become demoralized. So there really needs to be some other way, please.

 

[[mo...]]

9 hours ago, [[C...] said:

Yeah, that's seriously rough going, so so sorry. My version of that story went down today, surgery on my broken ankle. I didn't do well at all. Was on a crying jag last night and today. My wife was out of town during the week and I honestly felt I was losing it. As did it feel like sanity was seriously falling before my eyes. But I stopped taking Baclofen and Seroquel. Gotta try, letting go of those and live a more civilized life of which I've become demoralized. So there really needs to be some other way, please.

You did do well if you are here to tell us about it. Crying jags help us heal and I actually welcome mine which are usually daily. We are hurting.

Glad you stopped meds. Don't know much about Baclofen but I imagine Seroquel might slow you down too much and cause depression. My son was on it and gained a tremendous  amount of weight. Just saying. I had to stop opioid I was taking for pain which I was actually enjoying because it helped me sleep. Can't take a chance on another addiction. It's been hard to withdraw from it but so very familiar if you know what I mean... Good luck healing from your surgery and cry as much as you want. We are hurting.

[[re...]]

And so it goes with benzo recovery as well. In one story, you look forward to complete healing. In the other story, you are convinced you will never heal. Neither story is proveable. Both are unfounded and unscientific - because there is precious little science done in this area, because no one stands to profit from doing such science.

So which story do you prefer?

 

[[Wi...]]

3 hours ago, [[r...] said:

And so it goes with benzo recovery as well. In one story, you look forward to complete healing. In the other story, you are convinced you will never heal. Neither story is proveable. Both are unfounded and unscientific - because there is precious little science done in this area, because no one stands to profit from doing such science.

So which story do you prefer?

Wow. Thank you so much for sharing this. This touched me deeply this morning. Not only is this movie beautiful in every way, your insight was very profound.
 

I remember reading a peace written by you some time ago about eating alone or with company - you certainly have a way with words and a very soulful way of expressing yourself. 

[[mo...]]

Every morning I get to choose my own story - either I am blessed (I am not swimming in the waters of Gaza trying to get the food that was dropped to feed my starving children - at the brink of drowning) or I am cursed because my life has been stolen from me by my benzo experience). Most days I feel blessed.