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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.

Thanks @Eden1919 The system is a large part of why I am even ill in the first place, it has done a lot of damage and caused a lot of suffering. But as I have to say it, that's my experience and its also my experience that I'd rather never have been in it or involved with it. Same with other systems for me.

In response to: My new-ish diagnosis.

Re: My new-ish diagnosis.

Hi there @Former-Member

It is the moderator here. I am just following up your earlier post about not wanting to ask for support here. I really encourage you to keep posting about your lived experience on the SANE forums. And I an confident that other community members will still provide support. We all hope that you are also able to get the support you need both here and from off the forums.

regards

Whitehawk

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

Re: My new-ish diagnosis.

The other reason why I will not be asking for support of my own here, is because I am not the type of person who can be helped or supported by peers. It isn't fair on them or on myself. That's no offense, it is just the reality for me and I have to learn to accept it. I am too far gone to be able to benefit from peers, and as has been made obvious far too many times already, my explicit lived experience isn't very appreciated nor appropriate in this type of environment, never mind the fact I have no supports and no access to them clinically or otherwise in my real life. It doesn't belong here in an environment where we are supposed to encourage peers with less experience to get help, and I have no choice but to put up with that, so long as it isn't smeared in my face, I will continue to whether I like it or not.

So I will only be having general interactions and providing to others where my lived experience doesn't violate the guidelines.

You can of course hope all you want, all I am saying is that hope alone is useless and laughable.

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

Re: My new-ish diagnosis.

Hey @Former-Member,

When moderators jump in a thread it is always with the safety of members, community, and any member of the public reading the thread in mind.

It sounds like you are thinking about how you can use the forums in a way that works for you and is within the guidelines. If you have concerns or feedback about the forums, please email team@saneforums.org

Just a reminder as well, it's important for people to be able to express their experience and feedback around different services, including SANE and the SANE forums. However, repetitive criticism of a service will start to be in breach of our guidelines. Anyone can read more about that here:

Take care,
Tortoiseshell

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

Re: My new-ish diagnosis.

@Former-Member Well I am glad you at least saw my reply it seems to have been deleted. I am sorry you are finding it so frustrating to find a balance with being allowed to express yourself and the guidelines I also struggle with that. I hope you can find something here that is useful to you.

@Former-Member @Former-Member I am not sure what was wrong with my post I did specify it was my own experience but it has been deleted and I did NOT receive an email with an explanation.

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

Re: My new-ish diagnosis.

Sorry about that @Eden1919

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

Re: My new-ish diagnosis.

Forced inauthenticity.

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

Re: My new-ish diagnosis.

@Former-Member Don’t worry you didn’t do anything I probably didn’t word it right as long as you saw it then it doesn’t bother me the message got there in the end.

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

Re: My new-ish diagnosis.

@Former-Member You do what ever you need to do we will be here if/when you feel ready to come back.

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

Re: My new-ish diagnosis.

Hi @Eden1919

I'm so sorry it's taken us a while to get back to you. I was in the process of investigating to understand why your post was removed and why you did not receive an email. The removal of the post appears to have been an error on our part. Currently, we are moving to a new system of moderation and there have been some technical issues, so I am not sure if this is a contributing factor.

Like @Former-Member, I encourage you to email team@saneforums.org, if you would like more support around finding a balance between expressing yourself on the SANE Forums and staying within the SANE Forums Community Guidelines.

Again, I am sorry for the delayed response whilst trying to understand what happened to your post.

Kindest,

Amour_Et_Psyché

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