Lived Experience Forum

[Upndownnupndown]

(trigger warnings: mentions of abuse without graphic detail, mental health system systemic negligence and a serious un-alive attempt without going into detail)

I feel shame and guilt for being where I am in my 39 years of life; particularly in my journey towards self-actualisation. I dislike using the word "recovery", because that would imply that I once had a baseline that I was trying to reach once again. The trauma which occurred during the early formative years, unfortunately taught me the maladaptive coping tool of disassociation that I've been stuck with and in, basically most days, for the past 30+ years. This disassociation started occurring, due to 1 quite traumatising event (but many traumatic events followed it, during my early formative years).

I would like to try and keep this thread as my on-going discovery journey, a blog if you will, but I also would like it to be as concise as possible because I can easily get lost in my sea of thoughts, whether in spoken or written form. As I will be posting reasonably often with my progressive (and regressive moments), it seemed most appropriate to start the thread in this section, as although I'm finally making progress where I hadn't been able to for the past 30+ years, I'm often still left thinking/feeling that "something's not right" (laughing emoji).

At a recent Clinical Psychologist appointment, with a specialist who has so far at least, really proven himself to have my best interests in the forefront of his mind. At our very first appointment, I basically laid out how I've been taken advantage of by not only an extremely covertly psychologically abusive mother, but also by mental health "professionals" that matter of factually have acted in negligent and incompetent ways, for over 20 years.

I now realise that every mental health specialist that I've seen throughout those twenty years or so, all of them broke the The Royal Australian and
New Zealand College of Psychiatrists "Code of Ethics"; principals 1, 2, 3, and 10, and one even broke principal number 6. All of them, bar my current Clinical Psychologist and ironically, a public health system practicing Psychiatrist a couple of years ago who was threatened with potential legal action if any of my trauma was minimalised or that any attempt was made to water down any appropriate diagnosis after hearing about my symptoms on presentation, because I was sick of the Australian mental health system stuffing me around, that someone was finally able to help me to start to see why my entire life had been such a dumpster fire seemingly no matter how hard I tried to make something of myself. She diagnosed me with cPTSD.

Since the age of 18, I've lost count of the number of Psychiatrists that I've gone to at different junctures in my life, to try and get answers for why I've struggled so much throughout my life. I've also seen several Psychologists.

In October of 2006, I had a public health system Psychiatrist diagnose me with bipolar disorder, less than three weeks after my older brother had just un-alived himself. On the first appointment, and not even 30 minutes after meeting me, then saying that I would need to start taking a mood stabilising medication straight away. Talk about gross negligence and incompetence; attempting to diagnose such a serious condition that immediately followed such a traumatic event, whilst basically not knowing me from a bar of soap. Sadly, this is just one example of "care", provided by Australia's public health system that I've been unfortunate enough to experience over the past 20 years.

Coming back to the present, I recently said to my Clinical Psychologist that I think that I might have ADHD and possibly ASD (it's highly offensive to me that the powers that be, can get away with labeling anyone on the Autism Spectrum, as having a disorder, simply for being neurodivergent. It'd be like calling Down Syndrome a disorder). I said that there's no way that my struggles could be attributed to only cPTSD, that I've struggled far to much throughout my life for it to be only attributed to cPTSD. Under his suggestion, I found a Psychiatrist who from all the patient reviews, I actually trust will perform a fair and accurate assessment for ADHD and ASD, in April so not too far away luckily.

I said to my Clinical Psychologist that I feared that my assessment could be unfairly judged due to some sporadic periods of addictive behaviours in my life. I said that I wanted to have as much information to present to the Psychiatrist in April, and that I would like to be pre-screened for both ADHD and ASD, to if not confirm that I could be both which I had started to suspect that I was, at least to rule them out. I was therefore sent a number of assessment questionnaires to which I had no idea which diagnosis they would be pertaining to, and filled them out. When I had my next appointment, I was advised at the end of the appointment that the results had come back, and that they suggested that it is likely that I could in fact have ADHD and ASD (as well as cPTSD).  

Over the past 20 years of seeking answers for why I've struggled so much, I've had professionals suggest that I could be everything from Schizo-effective, to Bipolar, BPD, to Drug-Induced Personality disorder whatever that is. Most Psychiatrists have believed that I have Bipolar, simply because I mentioned that I wondered if I had it but that I wasn't sure due to my symptoms not exactly fitting even into that pigeon-hole. out of these plethora of specialists, numbering at least 7-10 how many of them bothered to undertake a pre-screening diagnostic questionnaire for Bipolar? Not one of them. From either the public health system or the private health system aka medicare rebated appointments.

To say that this newfound information has come as shock to me, would be an understatement. That and the realisation that the mental health system professionals who were meant to be administering quality patient care, have been so incompetent as well as often negligent, as well as having to process and grieve the loss of who I'd through denial, convinced myself that my abusive mother was, that I've had to extricate completely from my life. It's pretty hard to prove such a thing, but I have no doubt in my mind that she tried to goad me to commit suicide and was very nearly successful in becoming a martyr to two dead sons because sadly, she's got nothing else going for her. Not one authentic bone in her body. these words are not emotively-motivated but sadly, factually accurate in my opinon. my father is slowly coming around to just how covertly abusive that she is, she even used my serious suicide attempt as a weapon to psychologically abuse my father.  

I'm having so many realisations since this new found preemptive diagnostic information, that my life is finally actually starting to make some sense to me. Why I think and behave so differently to most. I'm so overcome, that when I called to speak to a counselor on your drop in free counseling service, that the poor person on the other end of the line did her best and she should absolutely be commended for her level of expertise, but after an hour of hearing about my circumstances the call was suddenly disconnected, I assume because she'd reached saturation point and didn't have the experience to be able to deal with a clearly over-stimuated/traumatised person on the other end of the phone. I really felt for her after I realised this, a few moments after the call was disconnected.

It was extremely embarrassing for me, but I woke this morning with a clearer head and the knowledge that it isn't my fault that I'm overwhelmed with everything (even though I'm making a lot of progress at this time), that I'm only human and that hopefully she would have someone to debrief with over what would've been a very difficult phone call for her to be a part of.

When it comes to misdiagnosis and/or incompetence/negligence in our public health system, can anyone relate to this post?

(I've also realised that speaking to SANE counsellors is just too over-stimulating for me at this time. It appears that both I and SANE employees/volunteers will all be better off if I keep my reaching out in the written form. I don't want a repeat of last night happening again).

[David_888]

@Upndownnupndown 

Hey bud.

There is no disorder. 

There is electricity going against our head from magnetic pole variations as well as frequencies [both manmade and natural]. 

It is inherently against us.

And we shape it as it is.

Into the sub, the con and the suss.

It's always a shadow over things.

When you feel down, remember that there are things against our head.

So that you can pierce the shadow.

Try not to get too wrapped up the multiple diagnosis. It's not going to get rid of it.

Learn to hate the subconsuss and pierce through it.

[Upndownnupndown]

Unfortunately when it comes to eligibility for accessing funding to help deal with these life-long condition(s) for things such as the NDIS, as well as keeping one's eligibility for the DSP, it isn't that simple.

Having said this, I appreciate the sentiment in being advised to not get too caught up in the sub-con-sus. When I learn how to, I'll share it with everyone who will listen because it sucks 😆 I've got some really good coping mechanisms for dealing with what I now believe are Autism-related "meltdowns", but I'm trying to learn new ways to deal with them in a healthy way.

My Clinical Psychologist said to me recently that on an emotional dysregulation scale, if it's a ten for example, that I need to have 5 tools to either "soothe" or "shock" me out of the dysregulation. Interesting stuff.

Since I was only told that I could be ADHD and ASD about a month ago (as well as cPTSD), this information has helped me massively to get to know who I actually am. Not what the public/private mental health system and my abusive female primary care giver have tried to project onto me for the past 30 years, because of incompetence and to be blunt, ignorance.

This recent diagnostic information has been the most valuable information that I've received in over 30 years, and I'm truly grateful to have this knowledge of self now. Hopefully it will continue to give me inspiration to find new ways to work around my deficits and to be able to truly lean into my strengths.

[Upndownnupndown]

No reply by an experineced peer support worker?

I though that this is what these forums were for, peope with complex mental health and trauma.

I found the telephonic form of counselling too overstimulating and emotionally dysregulating, so I thought that by putting things in writing, that it would slow down the obvious trauma response that seems to get keep getting triggered when I call for support as I have a few times, and the call on each occassion, hasn't been structured enough I.e. the person I've spoken to on more than one occassion, hasn't been experienced enough to take charge of a clearly distressed and emotionally dysregulated person that is conducive to being healthy for both parties in such a theraputic setting.

To have been ignored by the SANE staff for reaching out instead in written form, is not what I expected, but I guess that maybe my life experiences and difficulties are obviosuly too traumatic for the scope of this service, but considering that it's meant to be a counselling service for people with complex mental health and trauma, I expected the counsellors that I've spoken to, to be suitably qualified to take such a call.

It isn't my fault.

The fact that the only reply that I've received, was from someone who was quite dismissive and not a peer support worker, tells me that maybe I expected too much from the SANE.org.

I've had to walk many miles alone in my life, sadly I'm used to it. It's communicating with people considering the traumatic life that I've had, to be the real challenge. I guess that I just need to return to focusing on the social supports that are most conducive to someone with complex mental health needs, because this service clearly doesn't have the required skill set that it suggests that it does.

[NatureLover]

Hi @Upndownnupndown , I'm very sorry to hear about your situation and the trauma you've suffered all your life 😞

I'm glad you have the 2 recent diagnoses to help point you forward and make sense of things.

Regarding people answering written posts, my experience the last few years has been that the Moderators (employed, experienced Peer Support Workers) hesitate to reply unless no-one else has replied. They leave it for a chance to have regular members of the forums reply first, which is the model the forums are based on. The moderators are there in the background in case moderation is needed or a crisis is happening, neither of which I think your posts need. 

I am just a regular member of the forums, who doesn't know how to answer your posts except for giving sympathy for your situation. 

I really hope your upcoming appt in April with the new psychiatrist goes well. And I'm glad you've found a good clinical psychologist also. I hope this is your time for being able to move forward in life as you wish. 

A handy forum tip is if you type @ and then click on a name in the drop-down box, that person will get a notification and won't miss your reply.

[creative_writer]

Hi @Upndownnupndown . Nice to meet you. I am sorry to hear that you feel you weren’t able to get enough support on the forums. Navigating mental health in Australia is very challenging. I’ve seen multiple mental health professionals and feel as though I’ve been misdiagnosed at times too. It took me a while to find the current psych I see. It also took me a while to find the right Pdoc too, who sadly retired, so waiting to see a new pdoc, hoping this one works out for me. I’ve had not so good experiences too, including medical gaslighting which isn’t ideal if one has already experienced trauma in their life. 

I hope you are able to get the support you need on the forums, they are a lot of amazing people on here. SANE also offers webchat option too, I often find that easier than talking too, I get phone call anxiety.

♥️🫂♥️

[Upndownnupndown]

@NatureLover @creative_writer 

Thank you to both of you for your replies. I've realised that in my original post, I used very strong words and spoke in a very confronting way about my experiences in the both public and private mental health field over the past 20 years, that it was written in a scathing way. When taken into consideration with the other content of the post, I can understand why it was largely avoided, even by peer support staff. heck, if I was someone else and I saw such a post, I wouldn't really have known where to start in response either.

I didn't realise that there was a web chat option, that does sound like it would be more suitable to someone with the complex symptoms that I'm experiencing at this time (like many others on these forums).

Having said this, considering how the last couple of calls to the drop-in counseling service have gone due to my state once starting to regurgitate some of the more traumatising experiences of my life; numerous examples of them being from the field of mental health, our pubic health system and systemic failure to provide the level of support that I sought back when I was 17, from the Department of Human services, then experiencing the equivalent of radio silence from the peer support workers on this forum yesterday who appeared more interested in making small chat with people with thousands of replies to their threads, then attempting to reply to my post which took a lot of courage to post, tells me that they're not equipped to deal with my complex trauma/disabilities.

For what it's worth, I'm not angry at them. I understand that they too have their traumatic life experiences and are only human and doing their best. Choosing to not dignify my post with a reply was not acceptable though for a service that is meant to have the skill set to support people with complex mental health and trauma. It's what the .org proclaims to be able to provide, but I'm yet to see it as harsh as these words are. I wish that I didn't feel the need to write them but alas here we are.

If was to be miffed at anyone at SANE, it absolutely wouldn't be the peer support workers and forum moderators, it would be the CEO for putting employees on the front-lines whether it be telephonic or within these forums, without the necessary literary or coping skills to provide the psychological validation that those of us with complex needs, are starving for.

So many of us have experienced serious trauma in our lives and are starving to tell our life stories and be validated, and this experience with SANE since I commenced with their services a couple of weeks ago, has so far turned out the same as every other tax-payer funded public system support service to date; underwhelming (and unstructured). As harsh as this feedback is, I fully acknowledge this.

In fairness to the front-line workers at SANE I will say that I'm unfortunately for all parties concerned including myself, I'm not the easiest presentation to try to help, I accept this. I wish this wasn't the case, but it is.

I think that I'll just stick to the more tailored supports that are being extended to me at this time. I've just got too much riding on the upcoming couple of months in my life to risk being wounded by something as basic as being ignored by support staff on a public forum when trying to seek support.

[creative_writer]

@Upndownnupndown, since there are many threads on the forums, things can get a bit lost at times. If you ever want to talk to a moderator, you can @ and then type in moderator. It’s completely valid to feel hurt if you feel like you haven’t been validated. I’m sorry that’s been your experience.

💖🫂

[TuxedoCat]

Hi @Upndownnupndown, firstly, thanks for sharing your story, It's super brave that you reached out for support in a new place that has the potential to meet your needs (less overstimulating). I'm neurodivergent and find that very relatable.

I'm sorry to hear that we haven't lived up to your expectations in this case. If you're up for it, feedback on the service can be emailed to feedback@sane.org or via other methods linked on this webpage. 

In the meantime, I thought I'd tag a few community guides and peer workers who may be able to offer some support

@hanami @amber22 @Shaz51 @outlander @Zoe7 (and please tag others)

[Upndownnupndown]

To the credit of the peer support workers who have taken my phone calls, they have been truly fantastic to the best of their abilities, it would've been horrible trying to be there for someone as distressed and "over-stimulated" as I've been when discussing my story. I've done everything to not encourage such a situation to re-occur. The first phone call, I had too much caffine in my system. The most recent phone call, I didn't ingest any since the morning and I called in the evening at about 8pm.

It isn't the peers support staff's fault, but I just don't feel safe trying to seek support from this service any more considering how things have transpired.

We all need to do what will keep up safe, I really appreciate the replies and the compassion Creative_Writer. I wish I hadn't felt the need to write what I've written on this thread. From the initial monologue posted yesterday to what I've written today.

I've just been oppressed for too many years to hold back my viewpoints at this late stage in my life. I hope that change for the better occurs one day in both our public and private mental health system, but irrespective of how far we've come in, we've still got a long way to go imo.