Lived Experience Forum

[Appleblossom]

@Upndownnupndown 

I only pressed the support button as I have been busy and did not have enough time to formulate a decent enough response to your original post. Your post was not that bad in tone, as quite a few of us have experienced similar disappointments within the mental health system.  Yet to give an individualised response on such details takes me a bit as I also have to manage my own feelings about it all .... weary sigh ...  There are probably less people floating about on the forum than one might think, given it is Australia wide.  When I was first on the forum I might not get a reply for quite a while ....  Sometimes it takes time.  

Personally ... I am not for the formulaic ... "getting it" language.  I think ti oversimplifies things. I still find each person unique and their journeys have similarities and definite and usually significant differences.  Good luck with your other supports.

[hanami]

Hi there @Upndownnupndown 

I was one of the peer workers moderating yesterday when you posted. I really wanted to reply and I actually thought about how to do so for a lot of the day!  But you are right, I didn't feel equipped to address the complex issues that you face and have faced in the past and I hoped there was someone around who could. For future reference, perhaps I could have commented with honesty that I wasn't sure what to say. Please let me know if that would have been more helpful than 'radio silence'. 

Re the mental health system issues you discussed I actually agree with many points you made. But we have to walk the fine line here of acknowledging this agreement and avoiding that so as not to deter others from seeking help. I couldn't forgive myself if a comment I made had that effect on another member. So you see, not only do we have to consider the member we are responding to but the thousands of others who might come across that post on a public forum. 

Anyway, enough of my dilemma. I do really hope that you stick around. There are many people who have most likely had similar experiences and could share them with you. If you prefer to leave I totally respect that too. You come across as intelligent and articulate and I feel you could have a lot to offer that would benefit yourself and others. 

I'll leave it there for now. Do take care and once again I apologise for the avoidance of your post yesterday.

Warmest regards

Hanami

[Upndownnupndown]

@Appleblossom @TuxedoCat @hanami 

I need to do some things to try and regulate my emotionally dysregulated state now, but I really appreciate the replies considering the nature of some of my replies. Maybe I've overreacted, but I will try to reply to your comments soon. I think that I'm going to not visit this forum for a couple of days, and hopefully will come back with a healthier attitude towards this form of support. At least I've realsied that telephonic support is not safe for me or the SANE peer support staff, that is a start. This must be a very difficult role to work in, I'm fully aware of this.

I understand that many people are going through a tough time at this time, I'm not too self-obsorbed to see this. I wish that life was easier for all of us. apologies for the content of some of my replies today, it's just how I initially felt, they were probably a bit harsh.

[Appleblossom]

@Upndownnupndown Not sure if you are online right at this moment, but I saw your recent posts.  Saying hello.

Also with regard to thousands of posts ... they are an accumulation over time.  The addition of new posts to the forum is really pretty slow.  Off hand can be averaging a dozen a day ... give or take ...

Mods tell me if I am wrong.  Maybe that information could be made available on the site so that people have more realistic expectations.

[TuxedoCat]

@Appleblossom can you clarify for me what your idea is to displace on the website? I'm not sure I quite understand and would love to!

[Appleblossom]

@TuxedoCat 

will answer by email. Do not want to distract from original poster.

[NatureLover]

@Upndownnupndown  I think that Peer Support Workers are not going to have the same levels of skills as a psychologist or psychiatrist who have trained intensively for 6 years. As I understand it, the government is throwing money at Mental Health, but there is not time to train up lots of psychologists, or even enough psychologists who want to be trained, so the money goes to Peer Support Workers. 

---

@Upndownnupndown wrote:

to provide the psychological validation that those of us with complex needs, are starving for.

---

Regarding this, I remember my psychologist validated my childhood (actually lifelong) trauma over many years in therapy. I do understand this intense need, and the relief that validation brings. 

We on the forums, who are just others suffering MIs (mental illnesses), can certainly listen to your story and validate you that way, if that would help? 

And I hope your clinical psychologist can also do this? 

Sending you lots of good wishes...

[scout1572]

hey  @Upndownnupndown 

I am new here, nice to meet you.

i have anxiety and depression due to aspergers. I can communicate and language and communcation are a big part of me.

I constantly get in trouble (push back) from the intensity my complaints generate, especially when trying to deal with complex issues over the phone.

Everybody hates calling services like telstra, and it can make the sweetest nun swear like a sailor some days i am sure.

Dont beat yourself up. I'm not perfect, the people you speak with are not perfect... and sadly, regardless of roles, people can get triggered and react to things they should really let slide. Human nature i guess. Has been my experience.

So i can be VERY intense, and coupled with the ability to speak quickly and quite loudly, has caused me nothing but drama as mu health declines.

I have no solution to this other than, like yourself to have some self awareness... and i know to not do things when i feel my capacity to remain calm is impacted. i put it off where possible or what i do now it immediately tell the person i am in crisis and have issues and need extra support. It gives the person on the other end a chance to prepare so they dont get upset or the like.

Just wanted to share some of my experiences  and let you know i feel your pain. Sometimes better out than in is good in regards to feelings... but choosing your moments and environment can be helpful.

This is advice to myself as much as anything else...

..but feel free to chat with me when you want... i have a thick skin and know how saddness and pain can manifest itself.

You have a friend in me :0)

[Upndownnupndown]

Hi @TuxedoCat,

I wanted to thank you (and everyone else who replied), for the input into the messy beginning for me on these forums, a couple of weeks ago. Although a lot of what I said I felt was the truth, I definitely didn't mean for any of my frustration to spill out onto anyone on these forums, be it the SANE staff/volunteers/forum contributors.

After more than 20 years of misdiagnosis, medical gaslighting and to be honest, covert and even at times, overt oppression and degradation, this is merely one aspect of why I find it hard not to be overwhelmed with fear in my daily life, let alone this upcoming diagnostic assessment in mid April.

Whatever clinical opinion this specialist develops, is going to either hopefully finally vindicate me and give me the knowledge of self that I've been seeking answers for, heck praying for, for as long as I can remember, it will also give me the breadcrumbs needed to really start thriving in this system that was designed to fatally fail people like me, or I'm going to get medically gaslit again, further adding insult to injury and placing my back where I was in say August of last year; but now seeking a 2nd opinion.

I've been treading water to avoid drowning for the past 20+ years post leaving home. This isn't a problem though, it turns out that I'm pretty good at treading water. The hard part is not being resentful, dare I say down right angry at the potential for disrespect/discrimination towards the tail-end of this upcoming diagnostic assessment due to my socioeconomic standing. I've experienced this in this field too many times to wish to recount them all, as have many others on these forums.

Being neurodivergent is a real challenge for me. I don't know what it's like for other's with this "diff-ability", but coupled with the repeated trauma featuring in my life from as far back as I can remember in some form or rather, I still sometimes wonder why I stick around. Then I look at what the community does for me and I'm reminded that I do in fact matter. That I do in fact possess what it takes to soon be able to be in a position to really give back to the community that is making sure that my basic needs of shelter, food, clothing, communications and transport privileges are being met. The Government may wish me dead because I'm a BuRdEn On ThE tAxPaYeR, but just like for my evil mother, I choose to live in spite of those who wish to see me beaten. That and if I didn't truly have anything of value to offer society, I'd have died in that serious un-alive attempt back in September of last year.

I may have never had a fair start in life as so many others haven't, but I'm grateful for the support in my life that I have now, as well as have had over the years. It bothers me that so many are in need of the appropriate level of support (mainly financial), due to their incapacity to work, but are currently being left to languish on job-seeker. It just isn't fair, or right.

I'm also grateful to have a father who has not only stuck by me through thick and thin over the years despite our differences, he's genuinely had my best interests in the forefront of his mind where I've been concerned. He used the loss of his first-born and became a better person for it, but also a much better father. I wish I could say the same about my female primary caregiver, I really do.

due to being nerodivergent and I have no doubt that I am, it's really hard to socialise, as well as to not get overwhelmed in my day to day life, let alone the effect of consistent trauma in my life.

Something that I'm also wrestling with, is the notion that I've got to go into this assessment, trying to find the balance between presenting as someone who is in need of their expert diagnostic services, whilst not coming across as someone who actually knows who they are and isn't willing to compromise on a professional opinion of a person who's only going to have a number of days to get to know someone, who's lived/struggled for nearly 40 years. It shouldn't be threatening or a crime to know oneself enough to know who they are not. This knowledge has recently been given to me by a specialist in the field, it hasn't been conjured up by myself, yet the fear of being medically invalidated yet again is a horrifying thought to have to carry for another 7 weeks.

If I didn't need the paperwork for pursuing the necessary medication so that I can actually function at a level that I can be of use in society and meaningfully contribute, as well as having the paperwork so that if every I'm challenged for my eligibility for the DSP which I suspect is only a matter of when and not if, I wouldn't be bothering with the stressful and potentially further traumatising experience. I really have had enough traumatic experiences in my life already to last a lifetime of the average person, as much as that's bold claim to make.

I'm not a lazy person. I may have been too unwell to hold down a job for the past nearly 8 years, but I try my best to take care of my basic needs. I exercise regularly throughout the week, often walking for up to 1.5 hours at a time even with problematic knees, yet it's a daily battle to get the dishes done from the day before, just to create more dishes making dinner. It's a miracle if I have the energy to do the dishes that evening and wake up to a clean kitchen. Putting washed clothes in their correct place? it'd be easier for me to climb Everest. It's been degrading in recent years to see the level of regression considering that I'm such a go-getter by nature, yet reduced to such a pathetic daily existence because of multiple powers beyond my control. At least it's been liberating to know that it isn't due to some inherent defeatist mentality; that it's actually due to a chemical(s) imbalance in my brain.

One soon to hopefully be rectified.

Apologies for the massive reply, I don't expect much of a reply and it really is okay. The main reason for this reply is to keep up the promise that I made to myself being to keep a blog of my progress, as well as solidarity reasons for anyone else who might come across this thread and be able to identify with it and perhaps gain something of value from it. I feel the need to do it, out of respect to myself. I deserve as much I've come to understand, irrespective of all the b.s. I've had projected onto me over the span of my life. I am one of the lucky one's. Too many with similar struggles as individuals either end up dead or even worse, the living dead. I'm grateful to say that I no longer fit that description and for that, I have the community to thank. I look forward to being able to pay this gratitude forwards in the form of contributing to society in a meaningful way, as soon as I'm well enough to do so.

@scout1572 

Thank you for your reply, I apologise for being too overwhelmed with things to get back to you until now. I hope that you're doing okay. Honestly, I'm now exhausted from writing my reply to TuxedoCat, So I'm going to jump off now but I wish that I had the medication that I desperately need because if I did, I'd have the energy and concentration span to be able to reply to your reply specifically, as well as anything that I've probably missed, from @NatureLover, @Appleblossom and @hanami. The reason that I invested all my energy and attention span replying to TuxedoCat was because they mentioned that they were neurodivergent and therefore might possibly be able to relate to such a reply (yet not being asked to get caught up in the mess/pain of it all). this I would not wish on anyone, it's a burden that I will continue on carrying to the best of my ability.  I'm slowly learning that I don't actually need to be continually validated by others, something that my psychologically abusive mother conditioned me to seek from a very young age. What is important though, is to be understood. I hope that she finds peace one day, but it won't be at my expense. never again.

[TuxedoCat]

hey there @Upndownnupndown, I really appreciate you wanting to connect because I'm also neurodivergent.  I'm so glad to read of so many positives here. From your supportive father and to finding a sense of community. Having a sense of community is one of the things that has helped me most over the years.

And you're right. There is a lot in here that I do relate to: having peoples BS projected onto me, the same the world made me feel, the difficulties in some basic tasks even though they were all I wanted to do. And my heart feels really connected to you on those.

But there is also a lot of things that I don't relate to. And that's ok too because there a lots of different experiences. For example, while I acknowledge the MH system can be dehumanising and frankly, crap, I don't think it's purposefully designed to hurt people. I've also benefitted immensely from it and think a lot of people have. Your experience is still valid. Ours both are.

I loved what you said about thanking the community for getting you through to this point. And what I love about the forums, is that we are the community to so many people. And part of what people look for when coming here, is a sense of hope that the MH system can help them. 

So even though we have a lot of similarities, I try to focus on the positive experiences and I share them in the hope that they encourage people to keep trying to get help. To get them through the tough parts. I think hope is a special thing our community can provide people ❤️ 

Best of luck with the assessment, they're tough. But you will get to the other side ❤️