Lived Experience Forum

[Xibon]

Hi all,

After a lot of study and my own experiences within the Australian MH service delivery framework I have developed the feeling that the way mental health is cared for in Australia is very often pathologising and stigmatising. There's the rigmarole of needing to go to GPs or Psychiatrists for care plan funding, the view by many professionals that medication will solve most problems, the idea that disorders are because something is inherently 'broken' in a person, and the feeling that acute care facilities spit people out as soon as possible due to lack of funding and/or beds available.

Personally, though I do see the value of medications (and take some myself) and don't disregard the important role medical professionals play in mental health care, this all seems to add to the stigmatisation people with lived experience of mental health distress may have.

I sometimes feel as though this attitude makes it difficult for people to find help for fear of judgement, or that they won't be listened to. All too often these perspectives don't take into account the traumatic experiences, living environment, financial situation, class status, cultural/linguistic factors, or ethnic background a person may come from.

I want to acknowledge that things are changing, and accessible and affordable (see: free) psychosocial care is becoming more widespread. But I suppose what I'm curious about is whether others feel as though their journey's have been made more difficult due to the way our primary points of contact are often through the medical system?

Hope everyone is having a wonderful evening, and wishing a calm and restful night for all 🌻

[Acanthiza]

Hey @Xibon  the way things are structured definitely made it hard for me to get help. My anxiety is pretty severe in some ways and was even worse in the past. Going to a dr for a mental health plan was extremely hard for me, when I did it the first time way back when it took everything I had to go there. Then the dr needed more from me and I just couldn't do it, couldn't pick up the phone and organise anything more. There was no follow up, no-one trying to help me after I had tried so hard to get help. Well I probably didn't show exactly how bad things were but still, having the first point of call be a dr that is probably completely untrained and maybe even unfamiliar with mental health is not ideal.

Then we have how expensive it is to see a psychologist, how hard it is to find one that you gel with and is actually useful for you. And then the price of a psychiatrist which can be completely daunting. I still don't really understand the system but it kind of seems designed to make it hard to access financial help, especially if you have a mental illness which makes navigating things harder. Did I have something else to say? Oh yeah I wouldn't have seen a psychologist except it was free at my uni when I did my masters and luckily the psych I got was extremely approachable. I remember literally trembling in the waiting room to see him for the first time. OK it brings back the emotion when I remember things so I will back off. Like usual I write too much but I could go on a real rant about this topic.

[StanD]

Oh gosh @Xibon this statement scares me, & you are not the first person whom I have heard express the same observations.

Whilst their interpretation was slightly different, I think the statement made was ' talking about traumatic events is re-traumatizing."

I am literally currently fighting for my life. I notice too many gaps in the system. I cannot fathom that the care I am getting, is basically everything you listed. 

What I need is for professionals to acknowledge the extreme energy it takes for me to get through each day. Similarly to @Acanthiza experience in seeing psych. Yes, it is nerve racking. Waiting my turn to be seen by a person who is 'well ' . I'm not sure how to change this, though I can relate to the feelings of stigma, & an underlying tone, that 'I am the weak one. I am not in control.'

I think it would take very small changes, a small shift in perceptions by professionals that support us.

The number one 'code of ethic ' in MH , to me, at least - is that all decisions are made with the foundation of empowering the client.

The last thing we need, is to walk into an office, filled with books, feeling small & intimidated.

I too believe, that medications & counselling are essential. 

It's kind of more about the climate - how this occurs - what is expected of us as people who are extremely fatigued & traumatised.

One small change that would help my life, is a simple daily phonecall. 15 mins to touch base, assess my needs, let me know I am important. My recovery is important. 

Perhaps I could be asked, what I need help with today? Am I able to call my GP? Can a worker perhaps do it on my behalf?

I'm not sure if any if this is practical, or possible. 

What about daily encouragement? It's amazing how one person voice, & belief in me, can actually motivate me to do my dishes, or go for a walk.

On days I didn't feel like talking, that needs to be respected too.

I feel very confused about our MH infrastructure. I have encountered so much 'victim blaming ' to put it, bluntly. And - I owe my life to these people & have highest respect for them.

I think I have worked out, that there really is no medications - for trauma. It's difficult to explain, the meds can give partial relief, for partial time - without them - I am scared to think ...

I think I would need to be so heavily sedated, that my quality of life would be impacted.

The people I have around me, they are the best people I have ever met in my entire life. 

It is so scary to have my life in their hands. What if the system is wrong? What if discussing the trauma is the worst thing you can do?

The past is the past. It cannot be changed.

I want to look to the future. I guess I feel a lapse in this area. Maybe it is no one's fault. Perhaps, (almost certainly) I am not ready to begin my future yet.

But what if I could be - with the right treatment?

Could I have a kind worker to take me to yoga class each morning? Maybe meditation on the beach? Could a worker read to me, while I relax on the couch?

I think you identified a real flaw in our current system. 

It does seem to be heavily 'illness' focused. Like you said, 'the broken' needing our missing puzzle pieces.

When, what if the real answer is entirely recovery & empowering focused?

I don't want to spend next 2 years telling a psych all my past traumas. 

I want to go to the park & fly a kite!! Play with make -up. Get massages, go to a butterfly sanctuary or try zip line!!

Building good experiences. Making new memories.

I feel stuck in a system that is focused on my disabilities.

I hate to admit it - but I do feel an imbalance of power. I am the sick person - 'they' have the degree.

I never had a chance to get a degree. 

[8ppleTree]

ooof @StanD I felt this! 🩷 @Xibon @Acanthiza You all make such wonderful points. It's so hard to access the true idea of healing, through a capitalist, pathologised system. Yes, it's necessary to check for physiological concerns, yes, GPs can receive the basic Mental Health starter pack. But if a person calls to make an appt. for a mental health review, could the clinic not refer them directly to a mental health worker specially trained GP? A more direct integration of patients within clinics? 

That of course assumes that there are no wait times, that bulk billing availability isn't an issue.. etc.

[Xibon]

Hey @Acanthiza @8ppleTree and @StanD, thank you so much for the responses! 🌻

It feels very validating to know there are so many others with similar and/or relatable experiences of mental health distress. @8ppleTree, I love that you bring up the view of mental health through the capitalist system. It truly is a result of hierarchical, social-Darwinist thinking which creates such a system in my view. It's astonishing how atomising and against the idea of 'community' the current global economic paradigm is, and the medicalisation of mental health truly plays into this.

The thinking truly does seem to be 'the strong will thrive, others won't survive'. By placing the responsibility on individuals as solely responsible for their circumstances, and suggesting that some are simply biologically 'weaker' than others, the system rejects the possibility that maybe social class, ethnic/gender/sexual prejudice, or any other social factors may be present for those who suffer from mental health distress. Hustle/grind culture destroys community, and empowers the privileged - and health infrastructure aids it.

Even though there's a way to go, I'm very glad to see the shift/recognition of the value of social work and community and peer support in more recent years 😊

[8ppleTree]

Ha! The system taking responsibility for itself! What a concept, @Xibon! I've never thought of it in those terms before. Thank you 😃 It's so important to question and resist the culture that values people for their output and not for their inherent worth. 

I also believe there is hope, and informed practice that is evolutionary. Without the work and effort of many, many people within the system, we would still be in the dark ages. It's just so slow, compared to the utopian vision!

What would your vision be, @StanD @Acanthiza @Xibon?

[Xibon]

@8ppleTree hahaha, systemic failures being addressed certainly does seem a novel idea!

I love the way you have put things - 'inherent worth'. This really sums up the way I wish our society treated everyone, including the most vulnerable members of community - as worthy of dignity.

I also believe there is hope. Maybe there is some argument for looking at the whole of our society through the CHIME model? Unfortunately, I do also believe there is a lot pitted against those making positive change. But it will happen, as you've said, with the kindness, love, and effort of many 🌻

I suppose a utopian vision would be a world where hierarchies - particularly the ones which award some people almost unparalleled privilege and power fore seemingly no reason - are minimal. People are respected and able to live a life of dignity absent for prejudice or financial distress, community is stronger, and we provide each other with mutual aid when in crisis, not just judgement and division ❤️

[Acanthiza]

@8ppleTree  I would like to see more support in general. It is so hard to access and is slowly being eroded away. We should be going the other way, we are so wealthy as a country but somehow can't look after the most vulnerable. I work doing disability support and the way the NDIS works is a little bit insane to me.

I guess it boils down to what you think the purpose of our government / society is. To me it should be looking after people, to others apparently there is some other goal. In practical terms I would love for there to be better screening for people when they are young for mental health / developmental / whatever issues. I would also love for access to be easier to obtain for psychologists and such.

Actually I think it would be a really good idea for literally everyone to go to a psychologist at least once a year. There are a lot of people who need it but will never go because of their own prejudice etc.

Alright I am tired and rambling. @Xibon  your utopia sounds amazing, I think we will get to something like that eventually, or I hope so anyway.