Lived Experience Forum

[Eden1919]

This month is mental health awareness month and from 9th-17th is mental health week. So I was wondering what if anything will people be doing for this. It could be trying some new self care stuff or if you are very brave and able to do so even speaking out about mental health, what do you plan to do? 

alternatively are you someone who finds mental health week/month triggering or confronting? How will you take care of yourself during this time? 

i am curious to hear other peoples experiences and thoughts, for me I find it a difficult time as I am more likely to see triggering posts about mental health on my social media I also often feel left out because often my type of mental illness is never even mentioned and just continues to be swept under the rug. But sometimes I get the urge to want to say something and then I remember it is not really safe for me to do so. 

[chibam]

@Eden1919I tend to find this month very depressing, as we tend to see the same-old same-old media coverage about mental illness/mental health/suicide, indicating that little, if anything has actually changed in recent years. This is despite the endless natter that is made about mental health, using only the officially-sanctioned perspectives, of course.

I'm surprised to just now discover that a certain day, run by a certain organization has recently come and gone. (I can't name names, because I've had posts deleted on here previously for doing so. Think something akin to "Are you alright?"-day, run by the "Are you-alright?" organization 😉😋) I never saw it mentioned in my newsfeed. Mind you, that would've been right about the time that Her Majesty died, so all the media focus was probably on her and London then.

That day always winds me up, because the advice is always so hollow, thoughtless, and useless to a suicidal person. It's ultimately just a marketing ploy to herd people in to therapy, which does nothing more to solve peoples' problems then the shallow advice dealt out by said organization.

It just makes me feel sad, tired, worn out and hopeless. Another year gone past and I'm still single; still living without a real home, made out of a real family. No rescue forthcoming, despite the endless natter about the need to help people like myself.

[FloatingFeather]

Hi @Eden1919,

Thank you for your thoughtful post about mental health week. I really appreciate that you have taken time to write about this and you have given me food for thought - whilst some people may find this week engaging and positive, you are right, some people may find this week difficult and triggering. 

I guess it may be a similar feeling to days like Christmas, Valentine's Day, etc. - that whilst they may be a really happy and positive days for some people we should be mindful that these types of days may serve to be upsetting for others. 

I hope you are doing okay and thank you again for your valuable insight into this topic.

Warm wishes,

FloatingFeather 

[wellwellwellnez]

I also feel my diagnosis is largely overlooked in society (for a few (complicated) reasons).

Part of me thinks, because it's our week, maybe we're the ones who should be posting memes. The memes from the "under the rug" perspective.

[Eden1919]

@chibam yes i have similar thought on the "are you alright day" it is very shallow and doesnt really help anyone there is not help for the instance of if someone says they are not ok it is just like ignored or people get told to "seek help" but with no idea of where to even start and for those of us with long standing issues it really doesnt do much to support us.

@wellwellwellnez  yes i do wish sometimes i could make my own memes on the subject and speak up about my issues but it is still so stigmatised that it is hard to ever feel safe to do so. 

@FloatingFeather  yes i am aware for some it can be a positive time for year but i do struggle with it, perhaps if it was more inclusive and there wasnt so much stigma of my issues i might feel safer and more comfortable to share and partake but for now i will stick to being quiet. i do wonder what sane has planned though. 

[Willy]

Hi @Eden1919,

Copy  @Jafar,  @tyme, @Zoe7 , @Paulette 

You ask the reader of your post whether they are someone who finds mental health week/month triggering or confronting? Unfortunately I often find the entire mental health movement triggering and confronting not to mention frustrating. When I read posts on this and other forums, I typically feel powerless and inadequate to suggest anything that might be of help for someone who is experiencing real pain and suffering from mental health problems.

I have just been reading a post from Jafar  entitled “Depression, hopeless to continue life, it's useless”.

When I was a much younger man in my late thirties, I was in a similar position to Jafar and as far as I can recollect shared a similar attitude and feelings.

I was hospitalised in my early twenties and diagnosed with schizophrenia. Afterwards it was more or less downhill from there. I am now well into my seventies and things are considerably better but it has not been an easy journey. There have been many ups and downs with probably a few more to come.

As  tyme, Zoe7 and Paulette said to Jafar, reaching out is an important first step. After that I found that finding further useful steps to heal, manage or improve my mental health very difficult.

About a month ago, as a member of the Victorian Mental Illness Awareness Council (VMIAC) I attended a conference in Melbourne on mental health reform.

The Hon Victorian Minister for Mental Health, Gabrielle Williams MP stood up at the conference and in her best Pollyanna voice assured us that she was optimistic that all will soon be well. I simply don't believe in her vision because I believe the current underlying problems are not even being publicly talked about.

The most interesting thing about this conference was the difference between what was formally said in the conference room and the discussions that took place outside of it “in the corridors”. I spoke to a number of people who were well aware of the real issues and problems and are fed up, angry and frustrated by the existing system which many see as creating mental illness rather than helping to prevent or cure it. This included some senior mental health bureaucrats who feel their concerned voices are not being heard.

While legislative changes and additional funding will of course be welcome these alone will not change the system. According to some high level people I have recently been talking to, the overriding problem is powerful vested interests who are deliberately and effectively blocking any worthwhile reform.

During the conference the results of a survey were presented suggesting that since the release of the royal commission report, the quality of mental health services in Victoria has worsened. I personally had not noticed any such difference but when I mentioned that in my 51 years of lived experience things seemed to have become significantly worse it raised a few eyebrows. Things were of course pretty bad 50 years or so ago.

I recently came across a research paper based on information from hospital admission records in the UK. The conclusion was that despite significant advances in neurology, pharmaceuticals and psychology, public understanding of mental health from a compassionate and sociological point of view has been in decline for the last 150 years. Surprising as this claim may first seem, it tends to fit with the steady rise of world wide mental health problems reported by organisations like the World Health Organisation.

Many highly credible researchers from around the world have, for some years now, pointed out that the underlying problem with the mental health system is the over dependence on what is commonly called the biomedical model. I would like to point out that there is no suggestion of getting rid of the biomedical medical model, psychiatry or psychiatric medications. These seem to work well for some people but certainly not for everyone. What is being sought is an expansion of the existing system to give people a choice. This choice should include non medical models including psychological and sociological ones. The sociological model recognises amongst other things that social conditions and situations can have a significant impact on mental health. Another important reform requires putting a stop to ongoing human right abuses within the mental health system which includes coercive practices; forced admission and treatment; manual, physical and chemical restraint; and physical and verbal abuse.

Some of the proposed reforms talked about at the conference are laudable. Unfortunately many of them will require significant amounts of money and competent organisation to implement. This probably means they will take a long time to manifest. By contrast, the provision of socio-psychological services to those who want them can be provided quickly and at minimal cost if those charged with implementing such reforms went about their task with a spirit of reform instead of kowtowing to those seeking to further their own interests. The net effect could well be a significant savings in federal and state government public spending which could then be channelled into other services like supervised accommodation, for young people with mental health problems.

As for the well known and often illegal abuses arising from involuntary confinement and treatment, these could simply be stopped right now, with little expense. All that is required is the political will to do so. I believe many people working in state mental health services would welcome such initiatives with open arms.

Unfortunately, there does not appear to be that political will. Public money is being spent on royal commissions and reform conferences with talk of pie in the sky reforms, oblivious to the very large proverbial elephant in the room.

There are two important things that each of us who suffer from mental health problems can do about these problems.

The first is to educate ourselves about mental health, its causes and its cures and what is possible and share that information with any one who is interested. While no one has all the answers there is a significant amount of credible research information that has become available in recent years. Based on conversions I have had with people on various online forums, very little of this information appears to be getting through to the general public. Wide scale public ignorance prevails in abundance.

The second thing that each of us can do is to send a letter to each of our federal and state politicians asking them to act in our interests and change things. There are currently about 5 million Australians suffering from some form of mental health problem. If just one percent of us sent letters to our local members it would serve as a substantial wake up call to tell them to stop trying to pull the wool over our eyes and do the job that they were elected to do.

As I said at the start of this article, the next step forward for people like Jafar towards a happier and more fulfilling life can be difficult and often frustrating within this current environment. It doesn’t need to be like that.

Please start educating yourself about possibilities and send your letter of complaint to both your federal and state politicians today. Feel free to cut and paste parts of this article if you wish to do so.

Regards

Willy

[Eden1919]

@Willy  i absolutely agree with many of the points you make and once i do remember send a letter to the minster of health about the abuses in the system to which he replied that it wasnt his job and i should put in a complaint with the hospital despite me already having put in over 30 complaints none of which ever went anywhere. i think it will take more than just letters to overturn these abuses. for example i recently shared with a support worker my experience of being restrained in the hospital and they said they didnt believe that hospitals did that anymore and similarly they didnt believe ECT was still currently used. most people in the community dont even have a clue what goes on in the system but perhaps if they did we could get more voices to shout out to those in charge to maybe listen but it is hard to tell people the truth when a lot of places online and in person will ban you from talking about such things in the first place. this is going to be an uphill battle for sure but i do so hope that it is one that can be won. 

[Willy]

@Eden1919 

Thanks for your feed back,

I agree that it is not going to be an easy fight to win but we not in this alone. There is strength in numbers. The immediate task is to gather support from as many people like ourselves as possible with lived MH experience who have been ignored, marginalised and often mistreated over a long period of time.

A politician who tells one person that it is not their job to deal with this problem can get away with it. A politician who responds the same way to 50,000 people is likely to find themselves being held to account and ridicule on public media and out of a job at the next election. 

While there is a lot of talk these days about including the views of people with shared MH experience in public discussions and policy decisions etc, a report that I was recently given that was produced by the school of psychiatric nursing at the University of Melbourne claims that such representation is mostly tokenistic. They choose people for their committees etc who are willing to say what they want them to say and pay them something for doing so. I was offered such role myself not that long ago. I think the people concerned were a little offended when I told them what they could do with their job and their money. 
We shall persevere. Our weapons are the law, the media and politics. All must be used judiciously. Our first target is the Victorian minister for mental health the Hon Gabriel Williams. This however is only the start. To sustain this fight and win it we need to build a sizable "army" of people in Australia with shared MH experience and somewhat shared objectives so that we collectively have a real voice.  
Any thought or ideas you have at anytime are most welcome.

Regards

Willy  
  

[Zoe7]

@Willy I agree with so much of what you have written. I was recently involved in a community consultation by a national body and it was very clear that the 'report' was already devised. Furthermore, the convenor talked over the top of participants. They seemed to want to voice their knowledge rather than actually listening to those participants speaking. I conveyed my disappointment to one of the organisers and was given their email address to further add my concerns/voice - I have received no response!

With the amount of money that would be going in to running these consultations along with the royal commissions etc. that you previously mentioned ...we still see no real changes. So much of the money that politicians 'spend' on 'improving' mental health do not fall in the right places ....smoke and mirriors ...and paying people to 'find' where the money needs to go rather than to the actual services/programs that benefit those with mental health issues the most. 

[Willy]

Hi @Zoe7 , @Eden 

Thanks for your feedback

Pls have a look at my Response to Eden 

One of the problems I am aware of is that most if not all these MH consumer advocate organisations depend on government funding. Maintaining this funding seems to quickly become an important if not their main priority.

I believe we need a leaner/keener/meaner sort of "guerilla" style organisation that is independent of government or other organisational funding and  focuses on just two widely recognised but significant problems MH problems .

(1) The use/abuse  of involuntary treatment and involuntary confinement (ITO's and ICO's).

(2) Free choice of treatment including better public awareness of options outside of the prevalent biomedical model for those who want it along with public recognition that there is no one size fits all solution to MH.

I am no expert in social media but I am aware that it has been used successfully for causes like ours. It is something I am looking into and would be interested in any input from anyone who has knowledge or experience with this sort of thing.

Regards

Willy