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My new-ish diagnosis.

My new-ish diagnosis.

In the past 6 months I was referred to yet another psychiatrist in attempt to find me appropriate treatment, as my GP and I have spent the past almost 7 years failing to do so because of how the mental health system works.

As a back story, I was raised from birth to 18 in various types of high and specialist needs foster care settings, and I have been a mental health "patient" or consumer since I was about 3 years old. I will be 25 in June. As a young child, my first diagnosis was classic reactive attachment disorder and that remained to be my primary and most longstanding diagnosis until I aged out of foster care.

Alongside that diagnosis, at 10 years old I was diagnosed with major depressive disorder and even though it had never been an official label until recently, it was readily known and accepted that I have complex PTSD.

When I was 12, I was diagnosed with derealisation-depersonalisation disorder and my eating disorder (now known as OSFED)

Up until age 13, I received public mental health services provided by a specific organisation that specialises in foster children with extreme mental health issues that reside from prolonged trauma.

At 13, I was transferred to the local CYMHS and remained their patient until I was at the cut off transitional age. As adolescence progressed, it was discussed regularly in stakeholder meetings that complex PTSD is basically just a "grown up" version of reactive attachment disorder, but as my mental health continued to be observed and to get worse, also how both of those can in some cases unfortunately lead an older teen or young adult to have a co-morbid personality disorder.

By the time I was being prepared to transition to adult community MH services, it was well established that my likely prognosis as I started and continued young adulthood is that I would be one of those people who have a personality disorder, based on the severity and pervasive nature of my baseline mental health issues and the degree of treatment resistance I had.

Adult community MH services declined to take me on as a client because of that, and ever since I have struggled to find any kind of mental health services that last, if I am not automatically rejected. My GP works at a Headspace clinic, but I am well and truly beyond their capacity as far as mental healthcare is concerned.

I have spoken to countless psychologists, social workers, mental health OTs and psychiatrists since, and the local acute care team and I have a disgusting reputation and relationshit, yes shit, with each other, as a result of me having been mentally ill for so long and all of the long term hospital stays I had as an adolescent. They are extremely rude and disrespectful to me and I have ceased any and all contact with them.

My GP has been left on her own to "manage" me, which is more than a GP should be expected to do. I have a lot of complexities, both mental health related and not. All of my mental illnesses are very severe and they don't respond to any kind of treatment.

As noted, about 6 months ago I was sent back to the local gender psychiatrist who is in charge of all the psych clearances for medical transition for trans people. I was looking for his assistance to have a referral sent to the new service at the local public university hospital to have my reproductive organs removed so I can legally fix my birth certificate. That's a whole other story, though.

Generally, he does not actually treat co-morbid mental illness in his trans patients. However, he can and often does make diagnoses and treatment recommendations as part of the holistic gender dysphoria/gender incongruence and overall trans mental health assessment. He does that because he believes it is important to not treat gender dysphoria, gender incongruence and trans people as a whole as mental health problems. He's just there because that is what the standards of care require.

I spent almost 4 years with him during my teens, because at the time, teens were not allowed to medically transition in my state without family court approval, and when I went to have my Gillick competence tested, the family court declined because of me being under the chief exec of child safety's guardianship and not having a supportive environment or carers. That has done a lot of damage to my life, but is another story of its own.

So he knows my case very well and worked alongside CYMHS for that time until I was 18 and he could give me the letter for testosterone therapy. I am very grateful for his existence, and the fact he had so little say in my care and so little ability to do anything for me for such a long time only increases my level of appreciation towards his humbleness.

This last time, he told me that CYMHS was correct, and unfortunately I have become one of those complex trauma survivors with both a diagnosis of complex PTSD and personality disorder. He showed me the electronic version of ICD-11, which is the only medical text that recognises complex PTSD as a valid condition, and he went over the criteria for it to explain his diagnosis.

Then he told me why it is inadequate in my case and did the same for going over the diagnosis of personality disorder. He explained why he gave me the specific diagnosis he did, which is not one of the standard personality disorders, but rather a severe personality disorder based on specific maladaptive and dysfunctional personality traits.

He also went over the criteria and description for each of those individually and made sure I understood why he had come to that conclusion. He answered all my questions as far as "are you sure that isn't just my Asperger's or just part of complex PTSD?" was concerned.

He also said this is why you have been treated so badly and with such a high degree of stigma and disrespect from services and professionals. This is why the mental health system doesn't work for you. And for the first time in all my years of being a mental health consumer, I was not being lied to and things were taken seriously and to account, for the first time, I was told it is not my fault that I developed and have these problems, I have them for a reason and as depressing as it may be to accept that having gone through what you have leads to this for others, it is not theirs to live with or make any judgements about, or to claim they understand.

I am glad that I was told the truth because it gives me the power to be educated and properly informed, and the right and freedom to understand why I am the way I am, regardless of if other people approve or not.

Yes, I have a personality disorder, and no I am not like the stereotypes. No, there is not something wrong with me, no I am not a bad person, and no, I am no longer ashamed of having such a diagnosis. I have functioning problems, but I as a whole am not dysfunctional, I function in ways that are to be expected when you come from where I have come from.

I understand, but do not agree with why I am not taken seriously and why I am treated like a waste of resources. I deal with chronic risk every day of my life and have for so long that I have no memory of not doing so.

I accept who I am and what contributes to it, even if others do not and find me disturbing. I am the one who experienced what I have, and still experiences what I do, and I do not need anyone else to believe me because I know what the truth is and isn't.

Sure, I have what others refer to as an ugly and too hard basket diagnosis. All I can say to that is that is what you get when your existence has been ugly and almost impossible to continue.

I think "is this even an illness, or is it an injury" a lot of the time. I think it is more an injury than a legitimate illness in my case, but it is what it is regardless. I know I am far from the only one, even if it is made out to look that way.

Whilst I despise existing on my best days and would rather not remember what was done to me to force me to be alive on my worst, and whilst I morally disagree with forced survival with every fibre of my being, I am still here and whilst I think that sentiment that it is a good thing is a pile of shit, and disrespectful towards my lived experience, I am here so it must count for something, somehow.

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In response to: My new-ish diagnosis.

Re: My new-ish diagnosis.

Hearing you @Former-Member ..,,, sounds really rough.

Can you buy tinned soups that are good nutrition from the online store ? That might be helpful, and it's more liquids into your system too.

Can you try packing the rubbish down smaller ? Like rolling packets up and folding boxes flat ? That might take up much less room in the bags, and even allow for smaller bags. It's a habit I have gotten into in my apartment, sort of condensing the rubbish as small as I can squash it down to be.

i find one of those brush and trays with a long handle good for cleaning up, together with a dust-mop, and a fluffy duster takes care of a lot of surfaces without much effort. I tend to clean in dribs and drabs ... lots of little, rather that one big.

In response to: Re: My new-ish diagnosis.

Re: My new-ish diagnosis.

Got my first online home delivery of groceries this week for the first time in 3 weeks and they had literally nothing available food wise besides chips, cookies, lollies, chocolate etc. So I don't expect I'll be finding any real food for a while.

And yes, I do that already. For general clean ups it does help a lot, but the situation here is the result of not having received any adequate assistance for almost 3 years. I do my best to keep on top of it, but as I go around doing general cleans, i just end up adding to the existing bags in the end. The whole 5 bins between 18 units helps none.

But anyways. That's life.

I'm going to go for tonight @Faith-and-Hope thanks for popping around, but there comes a point where discussing things only adds to the problem and the fact nothing can be done about it. That's not to say I don't appreciate your efforts, I do, but that's just the way it is when you have chronic complex problems, at least in my experience. Not any help to just keep ruminating on them and talking in circles.

Hope your night goes well.

In response to: Re: My new-ish diagnosis.

Re: My new-ish diagnosis.

Thanks @Former-Member. It's good to chat with you a bit and get to know you, although it isn't any practical help ..... like you said, I know about it feeling like ruminating. I tried to get help around our family situation for years, and the same questions kept coming up, and the answers were showing up non-solutions .....

I hope some more nutritious choices are available for the next home delivery.

Keep taking care of you as much as you can.

In response to: Re: My new-ish diagnosis.

Re: My new-ish diagnosis.

Still around. Just don't have anything worthwhile or guidelines compliant to say. Besides, I'm going out of my way to largely reduce my use of "supports" that have zero practical benefit.

Keep taking care of me as much as possible, that'd be zero, as per usual. Anyways, I best be going, as talking in circles and small talk aren't what I need, even though I can't get what I need from anywhere, its best I reduce my engagement with things that have no use in the end.

In response to: Re: My new-ish diagnosis.

Re: My new-ish diagnosis.

Trigger warning

This is just an update, that I am very hesitant to make because of my experiences here.

@Faith-and-Hope @Appleblossom @Shaz51 @Eden1919

This morning I was having an online conversation with a person on another peer support site for mentally ill people. I have been a member there for 5 years, and have a private blog there that I write in on a semi-regular basis about my lived experience with severe and complex mental illness, and the psychoeducation I have gained over the years about complex trauma and child abuse.

Recently, as with here, I have been doing that significantly less because of how people respond to the way/s I communicate and me revealing that I have a personality disorder. Only there, I had a much more prolific presence and a far more established "relationship".

Over the recent months, I have been struggling a lot with the lack of options for practical and functional support to manage my illnesses and get through life overall. I appreciate that is my experience and that not everyone has this issue. However, part of aging for me has meant that my personality disorder has become more ingrained and established, and that I have had additional challenges with areas effected by having a personality disorder. For me, several of those areas are doubled because of the challenges that come with being an autistic adult, especially communication and relationships.

In my case, this presents itself in me being brutally honest in a way that many people find disturbing or very difficult to deal with. My personality disorder comes with markedly rigid beliefs, thought patterns and behaviours regarding a wide variety of topics, and I can understand that other people have different ones, but as applicable to me and my life, my brain does not accept any others besides my own as the truth and right for me.

I am very aloof and emotionally blunted and restricted in affect and emotionality, to the point it is very common for me to be viewed as cold and insensitive. I have little, if any tolerance and ability to deal with emotional energy and to understand things that are emotional and emotional standpoints. At the personal level, I struggle immensely to experience any emotions at all other than numbness, apathy and anhedonia. I have never experienced any emotional or mood state besides this and my severe treatment resistant depression in my memorable life. Even my severe TRD is very different to the emotional presentation of depression people are used to.

In addition to my rigidity, I don't have "normal" beliefs or thought processes. I only have obsessive and fixated ones that are pre-occupations. They are like a never ending broken record. I am also very analytical and can easily communicate about any subject as if it is perfectly normal and acceptable, from a rational standpoint, even when it is far from that. It has made me be taken less seriously in a wide variety of contexts.

I understand that it can be very difficult to understand a person who has a personality disorder if you have no experience with it. I accept it. I accept that it is bizarre and disturbing to come across a person who is so inflexible, and who has no real identity outside their complex trauma and very basic information. I accept that I can be difficult and a right pain to deal with at times. But it seems others have no concept of the reality that they are difficult for me because of having my personality disorder.

That things they deem basic are no longer basic for me. Things like having a conversation that will inevitably not be mutual or functional. Things like not being able to communicate openly. Things like being dumped with other people's expectations, whether intentional or not.

Things like motivation, having a wide range of experiences, being able to function in life, things like self-care and being safe, things like self-regulation skills and being able to respond appropriately to a variety of stimuli. Things like change and acceptance of change. Things like being able to understand and accept a wide variety of beliefs and opinions, and effective mutuality between fellow humans, heck even considering yourself as human and a real person.

The conversation revolved around how I am going at the moment and how I am managing my chronic suicidality and the things that contribute to it. I stated that I am struggling a lot with the lack of practical and functional support options, and with dealing with the consequences of not being taken seriously and of continuing my existence amongst the specific circumstances I exist amongst by no choice of my own.

I stated that I am struggling to be interested in communicating openly because of censorship and people ignoring me whenever I bring up things that are actually important, that actually matter for me on a personal level, as opposed to writing content for other people and their education, which I do a lot of.

That it seems my truth doesn't matter because it can't be fixed and doesn't fit in the box people are used to. That the having to repeat myself, repeat my explanations as far as my circumstances in life are concerned goes, has started to drive me nuts and exacerbate my sense of alienation and dehumanisation.

I am a very philosophical person, in a nihilistic way. It is one of few things that keep the ever fraying string of my existence in tact. That keeps me skating on very thin ice, whether I like it or not.

Of course, a lot of people think I am delusional because of it. For me, merely being alive and extant does not equate to actually having a life and actually living. For me, survival is not something to be grateful for with blind ignorance, I'll save you from the other examples.

I spent a long time producing my answer to this person's questions. As I've said before, I don't do small talk. The person responded with "I care about you and want you to live for me even though I know you disagree with that. I am very affectionate toward you and have a lot of emotionality and worry for you".

This is what I responded with

What am I supposed to do with that? What can be done with it? Its a feeling, not a tangible resource that has practical use. It isn't actionable. I don't think there is a nice way to say how little someone caring can do when circumstances that need practical resources that are actionable, that need change that can only be brought by those, are involved in why a person believes they should commit suicide or that doing so is the only way to deal with there not being any such resources available to produce the means necessary to action keeping themselves alive.

That's what I'm dealing with and what I have always been dealing with. Whether someone cares about me is irrelevant and has no impact. Never has. Its like a thanks for nothing situation. I need to learn to care about myself in the practical and functional sense in order to begin benefitting from fickle and non-practical things like other people's care.

And those around me need to accept that there are consequences that come from me doing that in these circumstances, just as much as they need to accept there are consequences that come with me continuing my life amongst the same circumstances. Without that, caring about me is useless and just comes across as phoney and forced. Something being done because you feel obliged to do it. You're not and never will be. I despise people who act like they are.

The only person obliged to care about and for me is me. End of story. Right now, I need help being able to do that for myself, but help is the same things that are practical and actionable in my case.

I need a home within myself, and a sense of authenticity and appreciation of and within that home before I can let other people and their care and other psychological and emotional supports in. There needs to be a full me present, where depersonalisation is no longer necessary just to barely scrape by. I don't have that, and I won't until my body is hospitable and no longer a huge threat to my life.

I need to be OK with me in every aspect. I'm not. And that is no one else's responsibility. Please stop taking responsibility for it. It is very hard for me to deal with, because it shows you have no comprehension of what I have to go through and what I need to achieve. That isn't your fault, but acting like you do is. The mixed messages are too much for me to process. I don't have the energy or capacity to right now.

I'm sorry that I can't say I am someone who benefits from other people's care and affection, or other attempts at support that aren't practical. But I can't say it, because I'm not. That doesn't mean I don't appreciate the attempt, its just not helpful and its only kicking yourself and me in the end.

I wish there was a nicer and more polite way to say this. But there isn't one I can come up with. I don't understand why everything to do with suicide has to be emotional. It draws me away and leads me to not be open about my own experience anymore.

I have many reasons why I disagree with living for others. Dishonesty is quite an understatement in my opinion, as far as those reasons are concerned. I think it is deplorable and morally rephrensible. I don't buy the whole guilt trip approach, and find it disgusting.

There is little else more wrong to me than asking someone to forget themselves just for your own gain, and just to not cause you pity and hardship.

Please do not shove your emotions onto me. They are yours, and your responsibility. I don't deserve to be suffocated by your personal effects. I don't do that to you, because I am a grown adult who accepts his own problems as his own, and as his own responsibility.

I would never in a million years demand you to live for me. Never. It is your life and I'm not in it to the degree you are to make such a judgement. I have told you before that I have boundaries and expect them to be treated with respect, because of how I was raised. One of them is not dumping your emotional affairs onto me and bringing excessive emotional energy toward me, and not expecting me or anything about me or in my life to be emotional, just because it is for you.

You have disrespected that for the umpteenth time, and this is why I have reduced my contact with you. I have a right to be open about the type of support I am open to and need, just as you do.

The person proceeded to call me a certain swear word beginning with c and told me I am a cold and heartless robot who should just piss off because I am a shame to those who have complex mental health issues.

This has happened probably 50 times in the past 6 months. I get a sense that these forums also do not appreciate my honesty and struggle with the fact that I am assertive about what "help" and "support" actually imply for me as an individual. This is why I am hesitant to continue posting here.

I wish to be true to my real experiences, but not in a way that causes me to be perceived as a cold and insensitive a hole. I wish to be free to be open, so long as I am doing my best to remain within guidelines, without having emotional charge and assumptions about how I am feeling added. Both of those seem to be very common around here. Again, I accept those things are useful for some members, and have nothing against it in such cases, that however does not mean it is automatically helpful for me.

I am a grown adult and whilst I do struggle with emotions and their identification, I don't appreciate being told how I feel by people who don't even know me besides what presence I choose to have on the internet. I have had more than enough abusers in my life tell me how I feel or how I should feel, thank you very much. If I am interested in that kind of help, I am more than capable of asking for it.

I also have the same sense that my problems are way too much for here, and that is the stuff that is within guidelines, never mind the rest, and struggle with what the point is in being open to others about it because of that. It seems that all communications lead to silence in the end, in my case. I don't particularly care about that, but I do care how that makes being here almost impossible and full of mixed messages, and to be honest, rather stigmatising at times.

I don't know, maybe some of you think about me and how I am doing, and I'm not saying I don't appreciate it. Just that its rather useless in this type of scenario where I can't really actually answer you, and even if I could, nothing can be done about it. My frustration does not lie with you, rather with how complex mental health issues like mine are approached.

I really struggle with the emotional, pity, sympathy and empathy attempts that make up a mental health peer support site. All of those are suffocating for a person like me who is not used to having them in my life, and where them being there only serves to remind me why I can't benefit from them being provided. I know its not my fault, but alas, the way I have been treated because I can't makes me feel very guilty that I am incapable of that seemingly "normal" and acceptable response to them. I have horrific memories about attachment therapy in relation to that, that I'd rather not re-live, thanks.

Sorry for the ridiculous length and I don't expect anyone to read this. Thanks if you do, though.

In response to: Re: My new-ish diagnosis.

Re: My new-ish diagnosis.

@Former-Member I can understand some of where you are coming from but I of course don’t claim to know how you feel only you can really know that but I do understand the frustration of trying to access the type of support you need and not being able to get it for what ever reason while also being told that you must use supports that aren’t helpful and that there is a “right or wrong” way to recover. For me I am always told now are too complicated or that people can’t help. And it is a struggle, especially when there is a constant expectation of being a certain level of functional. I am sorry you are struggling with communication with people I think some people are more emotion driven than others and that is ok but in my experience people who are emotionally driven don’t always get along with people who are more I won’t say rational but maybe more driven by practical gains/actions. I think it is just that the two are looking for different things really one is more external and one is more internal and they can flow in both directions but it is complicated. I am probably not explaining well so I will stop rambling but I am sorry you are having trouble trying to fit into a world that you didn’t choose but that you still exist in and I am sorry that you are not able to live in a way that is meaningful in the way you want. I can relate to not thinking existing and living are the same I hate when people say I must be coping because I am still here. Being here and coping to me are completely different and they are not really related. Anyway rambling again sorry I can’t really provide you with anything you would find helpful to your situation but I am listening and I may not always reply but you are not talking completely to a void.

In response to: Re: My new-ish diagnosis.

Re: My new-ish diagnosis.

I agree, its like introvert and extrovert being the complete opposite. Both are human, but very different types of human with their own separate needs and way of functioning and understanding themselves, others and their surroundings. There's a reason people call me a robot (and far worse), I have never been that emotional type and never will be. I have nothing against people who are and don't go out of my way to treat them like there is anything wrong with them, because there isn't, they are just different to me, but we do always seem to clash quite severely because we essentially work backwards to each other. The way I "work" or function is by thinking and my thought processes, by analysing and observing to draw conclusions, by using critical thinking skills. I am a very internal person, just not a "feeler" type.

In response to: Re: My new-ish diagnosis.

Re: My new-ish diagnosis.

@Former-Member I agree that no-one has the right to expect nor ask anyone else to live for them and to presume that, in my opinion, is a form of emotional blackmail. Whilst I have no idea what you are going through I do stand with you on recognising that the only person we all have to live for is ourselves - as we are ultimately the only ones that have to live with who we are, what we endure and what is happening for us.

In response to: Re: My new-ish diagnosis.

Re: My new-ish diagnosis.

Ok @Former-Member It seems to be ok to use 'brutal honesty' for you, as you mentioned in your long post. I have not responded to you for quite a while as you have rejected every " fickle and non-practical things like other people's care" that I've expressed in my attempts to support you, to use your own words. I am not able to respond to you any more. Please stop tagging me. I am trying my hardest to stay positive in these more challenging than usual times.

In response to: Re: My new-ish diagnosis.

Re: My new-ish diagnosis.

Hey there @Former-Member you always have very deep and incredible insights. Sounds like a few of the community members here have a bit to reflect on and maybe some relatability with what you said too.

You mentioned, "I really struggle with the emotional, pity, sympathy and empathy attempts that make up a mental health peer support site." I guess it comes down to perspective. I see a lot of our members offering up empathy, and it's something I think is really valuable and beautiful. But I am sorry to hear that it does not resonate with you or integrate in a way that is helpful, what sort of support is more helpful for you, in a setting like the SANE Forums?

@eth Thanks for your post too. I am sure @Former-Member will respectfully refrain from tagging you. If you both need any support, please send an email to team@saneforums.org and one of our mods can provide some insight.

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