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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.

84 replies

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In response to: My new-ish diagnosis.

Re: My new-ish diagnosis.

When I said my meaningless and pointless existence is exhausting, that even bothering to wake up is exhausting, I didn't mean I can't physically get off the mattress...... Don't know why it was taken that way. Alas, I have never had a bed in my whole memorable life. Always a mattress or just the floor.

Its another meaningless and pointless day full of exhaustion and never ending problems that cannot be solved. I have things to talk about, but I cannot here, so that's it for now.

Hope your days prove to be better than mine @Appleblossom @Faith-and-Hope @Shaz51 @eth @Eden1919

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

Re: My new-ish diagnosis.

@Former-Member I wish you a better day today than yesterday.

I am glad you have a mattress, and I hope your energy levels improve.

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

Re: My new-ish diagnosis.

Thanks @Faith-and-Hope My GP says the energy issues are a side effect of some of the brain injuries I have from head trauma in the past, so I will probably always have to put up with them. For me, they are also a part of my treatment resistant depression and the survival mechanisms I developed from my child abuse. I've had them since a specific event I can't mention.

I've tried to get help for them, but nothing has ever really worked. Antidepressants make them worse (as well as other symptoms) and it is very hard to find trauma informed treatment where I live. Even when I have managed to get a psychologist specialised in trauma, they haven't known much about the freeze response, not enough to be able to help me move past it. Its very strong and takes a psychologist who has a lot of experience in dealing with it who has a lot of patience. Unfortunately, I haven't found that yet.

I think its also an effect of my ED. I can't mention what specific behaviours are involved with mine, but even though I have a lot of food, I don't consume anything with proper nutrition and haven't for years. Hopefully that makes sense. I know before I have tried to type the name of the behaviour and it asked me to remove it, that kind of makes it hard to be honest and descriptive enough for conversation to make sense.

My GP thinks I might be one of the people who would benefit from off label medication, but that's very hard to find and afford. She thinks maybe an older antidepressant with a low dose ADHD medication would work for me, but alas. I've tried so many meds and med combos that pdocs don't tend to want to take me on board anymore.

Today I have picked up some rubbish and put it in garbage bags (cleanliness is a huge problem for me, part of my functioning issues) and listened to robot (the name for the service on my phone that reads text out loud for you, I made it sound like a robot)

I use it to read, because my attention and concentration is too poor to actually read. It helps a lot. I have quite a collection of e-books. Even when I'm not actually listening, it helps to have the background noise, although if I have it on too long, I fall asleep, so sometimes I have to change the background noise to YouTube videos.

I also had some roasted coffee beans. I eat them. Without caffeine, I am known to sleep for almost a whole day. They don't help much, but a little. Trying to find some way to get all the huge 240 L garbage bags in here down 3 flights of stairs and a 200 m driveway to the council bins. I have always struggled with that. Never found a practical way to resolve it. We only have 5 bins between 18 units here.

Motivation is a very large issue for me. I do fine at picking up rubbish and putting it in garbage bags, but not with taking that trip with such heavy bags to the bin. Public housing hates me for it.

Yesterday they sent a referral form for the PHN psychosocial program to send to my GP so it can be referred. We have already spoken about how that program is not appropriate for me though. Not sure how that will go, especially since my GP is only doing telemedicine.

I also already spoke to the other coordinating officer at the public housing office about how that isn't appropriate, if it was, I'd be going already. Not sure why his colleague sent the referral form anyways.

After almost a month, I was able to finally order groceries online for delivery. I've been buying most stuff I usually buy from bloody eBay, which is ridiculous. Oh well, we are in a pandemic after all. I'm still adjusting to the loss of services I rely on.

Wishing there was more functioning help, or even acknowledgement that functional deficits exist in complex mental illness. Sigh.

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

Re: My new-ish diagnosis.

Another meaningless and pointless day. Another day of going to waste. Nothing going on that is allowed to be brought up here. Still needing actual, practical help and functional supports. But my needs have never mattered or been able to be met.

I could write more, but none of it would make sense, because it would have to be censored to adhere to the guidelines. So I won't bother.

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

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

Re: My new-ish diagnosis.

Hi @Former-Member 👋

It's a rainy day here. My cat is sleeping. I have done a few things, then gone back to bed myself.

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

Re: My new-ish diagnosis.

Hi @Former-Member

I'm currently moderating the forum and am sorry to hear that you're feeling frustrated with the support you've received. I have sent you an email.

I hope to hear from you soon

Warm regards,

Mufasa

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

Re: My new-ish diagnosis.

Hello @Faith-and-Hope it rained here a couple days ago. Some people in the other units have pets, but I don't have any pet. I believe it would be irresponsible for me to have a pet because I can't even take proper care of myself and surroundings, never mind another living being that is helpless and extremely dependent on human care. I'm not very good company either and don't have the financial capacity to have one.

Besides, my favourite animal is owls, and I believe they belong out there where they are free to fly around and live their own life.

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

Re: My new-ish diagnosis.

Hey @Former-Member .... just picked up your message above the last one. I managed to miss your tag somehow.

Low energy really sucks. I am not full-on with "low nutrition food" (love that you have found creative ways around the forum blocks) but many years ago now I developed a condition that resulted in very low energy, and I started reaching for high energy low nutrition foods, just trying to cope. I was actually making it worse without realising. A nutritionist helped me out, and I got over the condition but have struggled to trim down again since, although I am not doing too badly now.

Maybe one of your baby steps can be a single "exchange" ..... exchanging one low nutrition food for a higher nutrition food, once a day. If that is too big a step, make it once a week as a starting point, and work your way forward when and as you can ..... golden rule is not to be down on yourself if you don't achieve it on the day - turn the page and try again. With time it will start to build, and the more it builds the more it starts to sustain itself.

Getting the rubbish down the stairs ..... hmmmm ..... can you use smaller bags and take two at once instead of one big one ? If they are well tied off, can you roll them down the stairs ?


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

Re: My new-ish diagnosis.

@Faith-and-Hope I usually try for 1 meal per day of something that is of more substantial nutritional quality, I am finding that quite near impossible during this pandemic, though, my grocery stores haven't had anything like that available in adequate amounts for almost a month now.

I am trying my best with water though (also a problem for me) and have been doing better with that. As far as the garbage bags are concerned, I have tried smaller bags more frequently, and rolling them, but it didn't last long because it meant having to sweep and pick up rubbish more often. I know that probably sounds pathetic, but its just very challenging for me to keep up with. The main cause of the rubbish is my ED. Its really the only thing right now that slightly pushes me to change my ways. Unfortunately the purpose it fulfills is much larger than that impact, but that's just how all EDs work.

If I were to list the things I have tried to resolve the garbage bags problem, most of them would sound absolutely ridiculous, because they were. One even included using an empty large storage container with wheels and gluing a pull along handle onto it so it was easier to take down the stairs and driveway, only problem was that the size and weight of it with the bag (held 1 at a time, couldn't find one bigger than that) it eventually broke.

What a mess that was. Someone saw me using it once and gave me a very strange look. Another one was using a cylindrical container, again hard to find one big enough, and rolling it, I rolled it one night and ended up losing control of it and almost breaking my legs and wrist chasing after it and falling over the top of it. I'm not very physically competent or agile.

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

Re: My new-ish diagnosis.

Back when I still had workers coming in, part of their job was supposed to be to help me with cleaning and other daily functioning, but they just never did because they didn't believe it was relevant to psychiatric disability. Not even the NDIS did, all of the supports they were willing to fund were psychosocial, even though I had several conversations with them about what I actually need and several reports to prove it. That was one of the reasons I left. Its very hard to have these type of problems as an adult, not that the foster care system ever provided any help for them when I was still a child, though. I don't mean to be rude or overly critical, it is just a very off putting and frustrating issue to have to put up with, one that seemingly has no end like all my other problems.

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