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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.

Yeah, @Eden1919, most of mine were received very young as you can see, and I had and still have that same train of thought in regard to them just being more fuel to the fire as to why there is no real help out there. The responses and ways I've been addressed and treated far too many times in the past because of having them is a large reason why I struggle a lot to "access support", especially crisis stuff, but also in general. I mean its not a very appropriate situation when you go to a professional and you have more knowledge than them. Its like trying to have an adult conversation with a kid in preschool. Never mind when they treat you like an alien or a pile of garbage instead of a person with individual needs and rights (although in my case, I don't really have many of those....)

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

Re: My new-ish diagnosis.

@Former-Member It really is a struggle in my experience there seem to be a lot of professionals who seem to think that having a mental illness automatically makes you also unintelligent I was literally told and my mother has been told by hospital psychiatrists “but she is smart so she can’t possibly have X issue” as if that is something that makes it any easier to deal with. It is also frustrating when you have done a lot of your own research and education (often to try and help make things happen) and they completely dismiss you as if you know nothing about yourself and they are more of an expert on you because they studied your conditions for a semester in uni when you have been living with it for 10-20 years. I really think when you have lived with something your entire life you just get super good at hiding it so then when professionals don’t think you look the way you are supposed they get annoyed and assume you are just there for attention but being able to hide something is not the same as being able to cope or manage an issue but many psychs I have seen seem to think they are one in the same.

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

Re: My new-ish diagnosis.

Ah yes the intelligence comment. I get that a lot also. And I also "don't look" like I have what I do apparently. Its actually a large part of my personality disorder traits to come off as a lot more stable and able to cope than I am, and my intelligence makes it seem as if I have hundreds of coping skills that are effective. Like, if they bothered to actually read up on my diagnosis, they would get why I am the way I am. But anyways.

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

Re: My new-ish diagnosis.

@Former-Member it is very frustrating especially with the "you dont look like" comments I always wonder what exactly does someone with a mental illness/disorder look like. i wasnt ever aware of there being a dress code or prescribed sense of style being part of the diagnostic criteria but as i keep being reminded i am no expert. I suppose there isnt much we can do on a personal level to change the system in a large way there are some things but I find when you have experienced truama from the system well for me anyway it makes me too afriad to try and change it because i feel safer staying quiet than risking being trapped by it again.

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

Re: My new-ish diagnosis.

I think with personality disorders it is more common @Eden1919 or at least in my experience it is, same for eating disorders as well. When people find out I have a personality disorder (which is usually without my consent or permission, because its not something I tell people, I already have enough problems with people making judgements about me due to me being autistic and how that effects certain things) they expect me to be some completely wild and almost feral person. Why, I don't know, but that is my experience.

Its strange because most people do actually notice the things about me that contribute to it, they just don't see it as that, they see it as just things I do to annoy people or make them feel like shit. But that's only in people to people interaction, most of my personality disorder is only visible when I am alone in my usual day to day life.

With the ED, unfortunately most people base that off your appearance and doctors seem to only care about the medical complications that some people have as a result of the behaviours, as opposed to the real illness. If I told them the impact mine has had on my physical appearance, they would think it is an oxymoron, in fact a lot of people have. Then there's the whole, at least in my experience, when you have an OSFED diagnosis as opposed to a clear cut one (hope that makes sense) when you aren't outright ignored, you are treated like you are some kind of special snowflake. Like why do you have that diagnosis instead of a more "normal" eating disorder.

At that point, it isn't worth going over why I have that diagnosis or even mentioning I have an eating disorder again. I tried to reach out for help for the first time on my own in January and was told nope you aren't medically unwell enough and you are too mentally ill and complex, your prognosis is too poor to justify funding any treatment services for you.

Gee thanks, it isn't like it is very difficult to ask for help and admit you need help or that giving up behaviours that serve a purpose that can't otherwise be served due to a list of very real and unfortunate problems I have no say in or control over even though they pertain to me and my health and body is very challenging. Oh wait, it is.

I made this picture recently and it has become one of my major philosophies in life despite how depressing it is.

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

Re: My new-ish diagnosis.

Hey @Former-Member,

I'm truly sorry to hear how difficult your experience has been of trying to get appropriate treatment for your eating disorder.

I'm just jumping in to acknowledge that the system is very far from perfect, but that all professionals are different, and some people thankfully have positive experiences reaching out for eating disorder treatment.

This isn't to take away from your experience at all, but to acknowledge the mental health system is really varied and that people's experiences vary, for those who might be reading the forums thinking about reaching out.

Take care,

Tortoiseshell

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

Re: My new-ish diagnosis.

Whatever.

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

Re: My new-ish diagnosis.

By the way @Former-Member that is why I won't be asking for my own support here for the time being. Generic shit like what you said. Sick of seeing it and being told it. That message doesn't apply to me. It just makes me want to seek support and talk about my own shit even less. So thanks.

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

Re: My new-ish diagnosis.

Hey @Former-Member,

I'm sorry to hear that. I know this part of our guidelines can be a tough one for different members. If you want to talk further with the forums team about this, please email us at team@saneforums.org

Take care,

Tortoiseshell

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

Re: My new-ish diagnosis.

@Former-Member I can really relate to that quote. yes for me it is similar most of the time when out and about in public i look reasonably normal but then when i am home alone if someone saw me it would probably really freak them out. the eating disorder stuff is really hard to deal with and I think not many people understand that even amoungst professionals. i am not sure what the answer is but i can really empathise with finding staying silent less hurtful than asking for help or speaking out as in my experience speaking out has only caused more hurt for me. obviously i cannot speak for others experiences but it is totally valid to feel hurt and betrayed by the system if that is what happened to you even if it didnt happen to anyone else if that is your experience it is ok to not trust it or to feel hurt and upset.

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