Lived Experience Forum

[Willy]

@tyme 

Here is a link to the You're Not Alone (YNA) online community to get you started. It will give you an idea of the sort of facilities these communities have and use. These communities are very flexible in the the way they can be configured. 

YNA is a large community and imo not all that well managed. I don't spend much time there. I am more involved with a much smaller community which is only for people with psychosis and where membership is by invitation.  
To me there is a lot more that can and needs to be done with this style of community.  Most of these communities are run by young people with mental health issues. The MH problems of some of these people are a bit sus but many appear to be quite genuine. It is hard to fake these experiences with someone who has been a part of the MH community for 50+ years.

IMO this approach is the way of the future and a means of providing the social/psychological component that is desperately missing from the Australian mental health system. Again IMO, I think it will require a cultural quantum shift in organisations like Sane to even be able to see it. I would love for you to prove me wrong about this but I am not holding my breath waiting.

Regards

Willy
 

https://discord.me/yna

[Former-Member]

Hi @Willy @I’LL get straight to it, I hope I can work till my late 50’s I’m 34 now and have worked 13+years which I’m beginning to see was difficult. 1.5 of those years I worked unmedicated. I’m not looking for any sort of response but they are just facts.

im learning more as I experience things on my own, I feel strong in facing these challenges and hiding my past life behind, just needed some time to get the ball rolling. Have you got friends IRL, family? I feel these are the things that got me to where I am today, with out them I’d be dead on the streets. They stuck with me for 10years while I got my shit together, not friends but family, and friends I made along the way.

I thank you for getting back to me as some people don’t. But that’s on them.

mental health psychiatrists do have a control of your life, and I feel the one I’ve chosen doesn’t do a bad job, has his days, doesn’t listen but points me to the right things in life. Except I’d wish he’d told me to stay home while I was going through my last round of medication. But I’m back to my regular self and have no symptoms and can hopefully push through with work.

don’t believe in god but I feel blessed to finally be here after a horrendous 10 years lol.

maybe just take it one day at a time, in regards to life I dunno your probably wiser than I am have a good day 

[tyme]

Very interesting @Willy .

I've had a brief glance at YNA, and will have a closer look later.

I appreciate your sharing this,

tyme

[Willy]

cc  @tyme @Former-Member @justcoz   @greenpea  

Hi  @Appleblossom 

The stupid "thought police" have been at it again. Just about everything I try to post on this forum these days gets rejected and I have to spend hours rewriting my posts. Often I don't bother. Furthermore what they edit out makes no sense. They talk about my content upsetting people. Do they stop and think about how much they upset people WHO NEED TO TALK OPENLY AND HONESTLY ABOUT THEIR EXPERIENCES and get repeatedly censored for trying to do so because they believe those experiences might upset someone. Apparently the Sane forum, paid for mostly by public money is only suitable for people who have "nice" mental health problems. Ever since I started trying to use this forum I have had problems. I believe this forum is highly discriminatory against people like myself who experience psychotic MH problems. 

After that little rant, my apologies for taking so long to get back to you Appleblossom. I have been spending nearly all of my forum time on “the other” forum.

You said: It sounds as if you have had a few great friendships from those mental health groups, and a good stable partner, so have done well considering the burden of experiencing psychosis at times.

Yes I have been rather lucky although persistence also plays a significant part. Like many people with MH problems I struggle with relationships at many levels and all too frequently still get knocked over.

You said : I tend to feel close with people who have experienced psychosis, but am learning not to make that the only reason I connect with people, as that often puts me in a rescuer mode, and I cannot carry that. 

Most of my friends and acquaintances these days are “norms”. Nearly all the people I knew with psychotic illnesses are long ago deceased. I come across quite a lot of people who obviously have MH problems but don’t acknowledge it. I guess I am one of those to them. Recently I‘ve started building relationships on line with other people who experience psychos.

You said: I probably have experienced psychosis a lot, but not formally diagnosed and mostly flew under the radar, so to speak. I have tried to be admitted to hospital a few times, they never take me. 

IMO you haven’t missed out on much not being hospitalised or diagnosed. My current psych believes that a lot of my current problems are the result of the treatment that I got in the early days in the psych hospital.  Like you, I don’t take much notice of diagnoses either or a lot of other things that so called experts say. I have done a lot of reading and research to try and understand more about my own problems and how to deal with them. In the early days I was really lead up the garden path by “experts”. There are of course many good, knowledgeable and competent people around but the level of ignorance and stupidity and the amount of damage it does to people’s lives is appalling.

You said: I do not have a normal/mad dichotomy in my experience but see continuums everywhere, and diagnosis based on arbitrary lines in the sand. 

I think a lot of people are at least starting to look at MH this way these days. It is about 35 years since I first came across this model. It was a part of a model that helped me considerably at the time. It was also met with quite a bit of suspicion and hostility at the time by some professionals.

You said: I also have a psychosocial lens from study in the early 1980s, and find it holds true, and is a better approach than pathologising people.

Context matters.  Trauma load matters.

I guess I have arrived at a similar conclusion after a life time of searching and trial and error.

I would add that Understanding and Compassion matters to your mantras

The "Other Forum"

It is a small community of people like myself who experience psychosis.  This other forum is entirely self managed. The way it works is, to say the least, very interesting. It is far more interactive than Sane or anything else I have come across. It feels like a real peer-to-peer MH support community where people bond with each other and offer genuine and sometimes almost instantaneous support. There are numerous ways of dealing with content that may be triggering that seems to work much better than the heavy handed, dictatorial censorship approach used on the Sane forum.

There are a number of ways I could go about getting help /support in a crisis situation  depending on the sort of response I want. I could start simply by posting something in one of a number of "suitable' areas. For example I could say that I was feeling 'blah blah blah' at the moment and was considering "blah blah blah'. 

Hopefully another member would respond to this fairly quickly after seeing an alert on their phone or computer.  There is a lot of flexibility in the way that any member can set up their notifications for different sorts of things. With such a small community it doesn’t take long to get to know everyone.

If another member offers support and it is accepted we could switch to a private one-on-one session. Most people most of the time seem to do this. Nobody else will then be able to see what we are talking about. 

We can use interactive text (chat) voice or even video but most people just seem to be happy with text. Personally I find text gives me time to think before responding.

I am slowly trying to introduce some decent psychological tools to this forum.  For most of these people it has been medication, medication and more medication with very little psychology/therapy. From what I can see the little bit of psychology a few do get is too little and of mediocre quality. Public mental health system stuff I guess.

Once people get the hang of using psych tools to work on problems and help each other,  I can see the potential to completely change and dramatically improve the way our whole mental health system works.

As I see it these days the current "state of the art" or best practices model is -

• Meds if and as needed

• Psychological tools and techniques with lots of practice and reinforcement

• A proper interactive online social support and community with the option to extend these into physical sub communities where this is geographically feasible and there is a desire to do so.

What I really like about this 'other forum" is that for the first time in a very long time I am free to talk openly and honestly about my problems and issues without  having to put up with arrogant, self righteous bullshit from people who have no experience of psychosis and no idea what they are talking about.

Many years ago I was in a physical support group that worked along similar lines. I found it very helpful, in fact it probably saved my life. Unfortunately  many so called "professionals" interfered claiming that people with serious mental health problems couldn't properly help and support each other without professional supervision.  In my experience this is total bullshit. 
I am sure that many professionals, if they were able to do so, would also feel threatened by this approach but it will be much more difficult for them to interfere.
  

Regards

Willy

[TuxedoCat]

hey @Willy, I don't we've met. I'm TuxedoCat, one of the peer support workers here. Nice to e-meet you.

Thank you so much for raising feedback. With so much stigma around psychosis, I'm sorry you've experienced that here. Like you say, it's important for us to share our experiences honestly so we can reduce stigma, connect with our community and support each other,

Your honesty in this feedback of the service is greatly appreciated as we can use it to assess and improve the support we give to our special community. I've let management know about this to review it further. 

We moderate in line with community guidelines to ensure the mental wellbeing of all our forum users. Our processes and guidelines are in line with a trauma informed and recovery oriented practice meaning that we acknowledge everyone is at different stages of their journey. This means some people might find some content distressing and we do our best to minimise this. It can be hard balancing what we want to say with knowing it can harm some people, but I'm hoping we can work together on that balance ❤️ 

[Appleblossom]

Hello @Willy I really appreciate your thoughtfulness once again.  This time it was a direct response to my personal sharing, which has been largely overlooked by many.

Hearing you about forum frustrations.  I have persevered cos I really believed it was necessary for other people, more than me.  

You said: "I am slowly trying to introduce some decent psychological tools to this forum.  For most of these people it has been medication, medication and more medication with very little psychology/therapy. From what I can see the little bit of psychology a few do get is too little and of mediocre quality. Public mental health system stuff I guess."

So good you are doing that. Keep at it. Its important work,

One of the particularities about my journey is witnessing from the outside some of the differences between the public and private MH systems.  ie My exhusband was from a family which consumes highest state of the art health care in all fields.  

I hear you about the problems of only 'nice' mental health problems being seen as appropriate to share.  I made a similar statement on here about 5 years ago.  Then dug in and tried to stay nice.  

One reason I withdrew from community guide role and am reluctant to apply for paid work in the field ... is that I do not want to be silenced now that I have finally found my voice.  I do not want to feel that by accepting a role or money that I compromise my hard earned insights or have to submit to further silencing.  I am fortunate that I have survived and am old enough to be able to make that call ... in some parts of the life cycle that is not always possible.

Re: UNDERSTANDING and COMPASSION MATTER and mantras for me.  Totally.  I think they underpin my whole life and approach.  ... lol ... to the point that I analysed a long time ago ... the value of "standing under" to reach genuine understanding.

One of my pet peeves .. is short gratuitous lines. .. like "I get it" without any other content that indicate understanding ... but that is the way of the world ....

take care

[tyme]

Hey @Willy ,

I hear your frustration at the forums 'police'.

Before working at SANE, I was a regular forums member. And yes, I DID receive those emails too. How did I feel? Not very good. If anything, bad.

I have taken these experiences to our community managers and rest assured, we are in the process of reviewing different aspects of the forums including the guidelines, emails etc.

I can speak to your experiences because I've been there. 

Thank you for sharing your thoughts. We value your feedback.

tyme

[Willy]

@TuxedoCat @tyme  @Appleblossom 

Hi TuxedoCat,

I question and challenge the assertion you made regarding the Sane forum's use of processes and guidelines that you claim are in line with trauma informed and recovery oriented practice.
As with almost everything else in psychiatry and psychology, there are multiple and often highly conflicting expert opinions about such things.

One commonly accepted theory is that triggering is dependant on the context in which the original trauma occurred. For example, if a young child was looking at a picture of pink daisies while being subjected to a traumatic experience, the idea of and perhaps the word “pink daisies” could become triggering. If this theory is given any credibility then trying to eliminate triggering words is obviously an exercise in futility.
One commonly used approach to control triggering content on some other forums is a facility to blank out certain content either automatically and/or manually by the content author as shown. (ref 1)

The content recipient then sets options on their profile to allow them to view or not view this content. If they have their viewing option set to “allow” they simply click on the blanked text and it is revealed. This gives both the content creator and the content reader a significant amount of control over the content they look at without heavy handed hierarchical intervention.

It is not my intention here to be critical or judgemental of the Sane organisation or anybody employed by it. Rather, the intent is to show through personal examples and experiences how triggering content can be highly subjective and why a formulaic or rule based approach is not only inadequate but grossly inappropriate.

As someone who periodically experiences high levels of psychosis, I have to be very aware of triggering situations so as to try to avoid them.  Triggering words for me include and relate to things like control, force, harassment, bullying, rejection etc. I suspect that many people who experience psychosis would be likely to have similar triggers.

Ironically my most triggering experiences on the Sane forum come directly from the forum moderators trying to control the forum content to prevent triggering.

One obvious way for someone like me to avoid these triggers is to stay away from the Sane forum altogether or significantly limit my involvement. An early experience on this forum about three years ago was highly triggering due to what I experienced as an inappropriate and arrogant put down by a forum staff member of my legitimate request for help and advice. As a result, I had very little to do with this forum after than until early this year despite the need for such a facility.  Another triggering situation for me is when I make a sincere effort to try and avoid putting anything in my post that I think might be regarded as triggering and it still gets rejected as unsuitable content. My experience in recent weeks has been that what I am allowed to say or ask about on this forum is very limited  Even if an apology is later received for rejecting my post without reasonable cause, it is too late. The triggering has already occurred and any damage from it already done. 
I am suggesting that Sane or any other organisation, who attempts to exercise censorship of expression over anyone suffering serious MH problems can easily become responsible and dare I say liable for subjecting people in the community with such issues to further trauma.
This sort of heavy handed approach relates closely to the common practice across the whole gamut of MH service providers including the majority of psychiatrists and psychologist to dismiss experiences that they regard as delusional as symptoms of a psychotic mental disorder rather than attempting to empathise with and understand the persons experiences; a process formally known as normalisation. Normalisation is a fairly easily learnt skill that most people could master if they chose to do so.

A number of studies show that a non normalised approach has a significantly worse impact on positive clinical outcomes. (ref 2). A common and frequent complaint from people with serious MH problems is that their professional advisers don't listen to them. I trust that I have made it clear about the significant problems that this "we know best" approach causes.

I agree that it is difficult to find a balance. I would also like to point out that it is extremely difficult living with schizophrenia. After 51 years of attempting to do so I am still trying to learn how to manage this daily juggling match. This task is not made any easier by government authorities and government funded organisations who are supposed to be helping people with MH problems who go around making the situation worse.

Another related and common problem that others have reported on this forum is when forum staff respond to a post with a comment like "I am so sorry you feel that way etc etc."  Insincere, superficial comments like this are seen for what they are i.e. manipulative and can also be  triggering for many people. Again it has do with not being listened to and treated with what is essentially contempt and discrimination.  People who experience psychosis are not inherently stupid or insensitive in fact they may well be quite the opposite.
I would simply suggest that Sane staff stop this "nice" behaviour and start trying to be "real".
I appreciate  that many if not most people have trouble connecting with someone who is  experiencing psychosis. If this is the case, the most appropriate response is for them to recognise that this is a deficiency in their cognitive ability and simply shut up. Wading in and trying to control and manipulate a person who sees reality from a different perspective and has already been highly marginalised as a result of this is cruel, damaging and totally unproductive.  

ref 1 – This is an image of of my own post on another forum. The words shown are my own and I re-present them here. They are in no way are a breach of privacy or confidentiality of anyone else.

ref 2 – This is just one example of many similar studies that could be cited

The Effect of an Educating versus Normalizing Approach on Treatment Motivation in Patients Presenting with Delusions: An Experimental Investigation with Analogue Patients Lullman and Lincoln 2013

Regards

Willy  

[tyme]

Point taken @Willy .

Thank you,

tyme

[Willy]

@Appleblossom 

Hi Appleblossom,

You said: This time it was a direct response to my personal sharing, which has been largely overlooked by many.

I seem to be forever railing about the Sane forum and my frustrations with it but I think that personal sharing or relating to anyone in a meaningful way is made extremely difficult by the format of this forum.

Interactive online discussion 

I am posting here a recent dialogue from "the other" forum.

I have changed the name of the other person to XXX. I hope the Sane moderators won't find some excuse to reject it because I really can't be bothered fighting with them any more. The point in posting this is to show you and any one else interested how a natural and fairly spontaneous online conversation is possible. I don’t believe that there is currently any way of doing anything like this on the Sane forum.

What this means is that it becomes extremely difficult to connect with people and build relationships using a facility like Sane. I know a lot of people disagree with me but I believe supportive relationships are essential to developing and maintaining good mental health. I find it very difficult to talk about my experiences etc with so called normal people outside of these forums. The take away that I got recently from both this and "the other" forum is that it doesn’t pay to even let "norms" know you have mental illness, let alone try to talk to them about your problems and issues.

Here is the conversation. It took place over about 50 minutes This conversation was public but it could also be conducted privately so that no one other than the participants could see it.

Me: Unless I decide to take myself out, I still have to function in this world as best I can. Like others here I have this brain/mind that doesn't always allow for best functioning so I have spent a significant part of my life trying to fix it up one way or another.

XXX: Trying to find ways to trick myself into functioning correctly is like an art form especially when something important comes up and I cant get myself to leave the house.

Me: It probably is an art form. I think the best way to master any art is to study "The Masters" of that art.

XXX: I couldn't agree more but growing up in a family where MH was very common I never had to look far, it didn't really help much in the end.

Me: I suspect that there were no masters in your family or mine either for that matter. That is why we never learnt these life skills and why we have MH problems today.

XXX: I hadn't thought of it that way, very insightful.

Me: Common knowledge actually. Family background has a huge bearing on MH which doesn't mean our families were necessarily bad people but just lacking in essential life skills and therefore unable to pass them on.

XXX: My mum and dad met in a psyche ward, the doctor told my dad that he must not marry my mum, so he did and had 4 kids. Broken people from broken homes who never tried to fix the issues they faced don't make good parents in this case it seems.

Me: Some believe otherwise but I don't think we get to chose our parents.

XXX: I agree with you on that. I don't know how I could form that bond with someone who wasn't blood parents even if I was adopted.

Me: As you said - fixing up issues from past trauma is an art form. It is not an easy thing to do and a lot of the help around both then and now to be frank is less than helpful imo.

XXX: For me its all about getting to tomorrow in one piece if I manage that I'm happy, but in terms of fixing things I think I do the opposite as if its muscle memory.

Me: There are a lot of "techniques" that I have picked up over the years and use. Dealing with things one day at a time is one of them. As for fixing things I have had some success but a lot of disappointments. I am still trying. That is why I am on this forum. Human beings generally achieve a lot more when working together than when working alone.

XXX: Anything I come up with I seem to forget the next day. Any good plans or mindsets don't last long enough to be useful like I'm battling to be the good version of myself but the bad one wont let me.

Me: Yes I understand what you are saying. I don't find trying to battle with myself helpful. I find a lot of popular ideas like positive thinking just get overrun by the negative stuff.

XXX : Me too and the more I try to think about it the more my thoughts spin and it usually leads to an anxiety attack.

Me: The thing that worked best for me many years ago was a support group similar to this but not online. I think what worked most for me was the support, acceptance and encouragement from the group. I also discovered fairly quickly that I had all the wrong ideas about feelings and emotions. I was following what at the time was popular thinking and it was leading me down the wrong path. That may have just been me but it was a big important discovery for me at the time.

XXX: That works great for me but my support group is online and a lack of positive irl influences is really getting to me nowadays. My friends are either young addicts or recovering ones and people who aren't addicts in some way seem to not exist here.

Me: That doesn't sound too helpful.

XXX: Its not I have to avoid my irl friends like the plague nowadays for my own sake.

Me: Yes I understand. Back in the days of the support group I just mentioned I had a similar problem. I had to break with a lot of old friends who were into destructive stuff. It was pretty difficult but if I hadn't done that I would have just got pulled back down again. For quite a long time most of my close friends were people in the support group. Some of those friendships lasted until they died and I still have one good friend from those days who is still alive. I have a few non MH friends these days but it is often hard work for me because I have to put on a façade with many of them or they become uncomfortable because of the schizophrenia. I can really only talk like this with other MH people.

It is 4.30am here in Oz so I better get some sleep. Thanks for the conversation.

XXX: No worries, you too

[End of conversation]

note irl means In Real Life

You said: I have persevered cos I really believed it was necessary for other people, more than me.

For me I see it as mutual. I have difficulty talking to others other than my current psych about my MH issues/experiences but I do try hard to be helpful to others and pass on things I have learnt in the MH school of hard knocks.

The "other forum" is also frustrating at times. The people are all pretty young and there seems to be a lot of ignorance both about psychiatry and psychology. They seem to have swallowed the pharma industry’s story hook, line and sinker and spend a lot of time talking about which concoction of meds will fix this or that symptom.

You said : I hear you about the problems of only 'nice' mental health problems being seen as appropriate to share. I made a similar statement on here about 5 years ago. Then dug in and tried to stay nice.

The Sane people would throw a mega hissy fit if they saw the conversations that take place on this "other forum" but this is my world at least in part. It is a world of mental hospitals, psychosis and schizophrenia. It is decidedly human but "un nice".  The other part of my life is pretending to be normal which becomes increasingly stressful and likely to collapse the closer I get to people. If they find out about me they often move the relationship to arms length or worse. I find the fact that the Sane forum makes it very difficult to have any sort of meaningful communication along these lines disappointing.  The “other forum” is also frustrating but in a different way. There is a complete lack of older, more mature people. Some of these young people are pretty smart but they lack life experience and perspective.

I can't see the Sane forum making any significant changes in a hurry so it would be good if there were a few people like yourself on this "other forum".

You said : One reason I withdrew from community guide role and am reluctant to apply for paid work in the field  is that I do not want to be silenced now that I have finally found my voice. I do not want to feel that by accepting a role or money that I compromise my hard earned insights or have to submit to further silencing. I am fortunate that I have survived and am old enough to be able to make that call in some parts of the life cycle that is not always possible.

I have recently become involved with the Victorian Mental Illness Awareness Council (VMIAC). They are supposed to be an advocacy group for mental health reform. I fully support their vision but from what I have seen so far, the "talk is not the walk". I have already had an a bit of an issue with them. They wanted to me to become involved in paid advocacy work. Most of VMIAC’s funding, like Sane, appears to come from the state government. When I pointed out that there was a conflict of interest but I was quite happy to help them for no payment they seemed to lose all interest because I didn’t/wouldn’t fit into their system.

You said : the value of "standing under" to reach genuine understanding.

I am not sure I understand what you mean. I would be interested in hearing more.

You said : One of my pet peeves .. is short gratuitous lines

Yes these sort of responses also annoy and frustrate me. Most of the Sane forum seems to me to be about people venting (nicely of course) with these gratuitous and mostly meaningless responses often from forum staff.

Other stuff

A couple of days ago I received a response from the Victorian police to my complaint made months ago about the forced intervention etc into my home at the end of last year. The response was just a fob off as have been the responses to the other complaints lodged so far. I haven’t heard back yet from the Health Complaints Commissioner in regards to the complaint made against the doctor for making a false statement to the police. None of this is unexpected but it is disappointing nevertheless. The next step is the Victorian Ombudsman. If that fails, as I expect it will, the step after that is trying to find a representative body interested in taking it to the High Court of Australia. In my opinion it would be a good test case because it was such a blatant and unjustifiable case of abuse and law breaking. There are also credible witnesses etc but I am seriously wondering if it is worth the effort. Everybody knows that this stuff goes on but nobody seems to really care. I see it as an elephant in the room situation. All that any of these government funded agencies seem to be interested in doing is building their own little empires rather than fixing any real problems.

There are a number of other related things I would be interested in talking to you about but I am not comfortable doing this on a public forum like this. In any case I think it would be impossible to do so without the “Thought Police” getting upset and intervening.

Regards

Willy