Other Ddnos

[theshadowoftheliving]

The DDNOS diagnosis came from a past therapist that wasn't really great in a lot of ways (that she would cancel last minute repeatedly, not answer emails, etc) so I don't think that the response I received was ideal. Basically, she just dropped it in my lap and then didn't offer any extra support. My alters got really mad and hurt me in a desperate attempt to prove that they were "real" and it was, generally, really scary for me.

I can't remember if you feel like you have alters/others/parts or not. If you do, just know that no diagnosis changes them, and you are still you.

My biggest advice is to just take care of yourself. If you are feeling isolated, maybe this is a good time to send an email to a friend or text a family member (even if it is about nothing) just as a way to connect with another human. The strangest part of all of this is that no matter what the diagnosis is or says, life just goes on as if it didn't happen. Sometimes it can be good to be reminded that nothing major has actually changed.

 

[Sandstone]

If your locals don't have the right skill set, they really can't do much more than active listening, supportive therapy

Let me be clear that my local "team" consists of one person, in the most demoralised and overworked professional sector of the most demoralised and underperforming district of the first MH trust to be put into special measures, a trust that is currently rated in the bottom three in the country, and that has one of the fastest rising suicide rates in the UK.

This one person team is not a therapist, he is is a MH nurse with a role that was once supportive, but because of workload has become mainly administrative. He has been my "Care Co-ordinator" for a year and seven months. During that time I have met him twice, once in a discharge meeting that he only attended that at the insistence of the consultant in charge of the unit. If you look back through my posting history you will see that I have had to resort to going to his seniors or through Complaints even to get a phone call returned. I expect it to take at least three calls, often as many as seven before there is even as much response as a message left with reception that he is aware I am chasing him.

I can only begin to try to initiate contact with this man when I am feeling at my most healthy. I have explained to him, to his managers and to complaints, both in person and in writing, that this refusal to respond is harmful to me. It clearly echoes my childhood experience of telling and being ignored. It reinforces the elements of myself that believe there is nothing wrong except that I am an evil, lying manipulative nothing who deserves to be ignored and despised. It feeds into the swirling confusion that I live with at the best of times. I have two assessments, commissioned by this Trust, that describe me as seriously ill and in need of ongoing support. Instead I have nothing. That confirms to me that I must be wrong.

This post may read as angry. I hope so, because I am furious, both that I am being let down so determinedly and that this thread is getting replies that assume I must be misrepresenting the position when I say I am on my own with this.

Let me repeat, I, alone, need to come to terms with this diagnosis. I ,alone, need to find a way to adjust to the idea that experiences which have been normal throughout my life are actually abnormal enough to be labelled as Severe forms of dissociation. I, alone, need to deal with idea that there is a DDNOS label that reads as "not yet DID". I, alone, need to deal with my confused sense and terror that there is something there seething below the surface that wants to get out and be heard.

When I can face all that without it being too destabilising I can start the next stage of the fight to get some therapy, but right now I just need your support as I try to understand and accept what is happening.

I do know that there are many supportive responses here, and that every one has been intended as such. I may be wrong in my assumption that everyone else who gets such a diagnosis has some supportive expertise on hand. Perhaps it is common for it to be dropped from a height by friendly waving bombers who fly off home leaving the recipients to clear up alone.

 

[theshadowoftheliving]

This post may read as angry. I hope so, because I am furious, both that I am being let down so determinedly and that this thread is getting replies that assume I must be misrepresenting the position when I say I am on my own with this.

I think that you have every right to be upset an angry with your care team, since they have not, in any way, been doing their job. I also think that one of the impossible-to-resolve-issues of an online forum is the inability to ever truly "know" someone and their situation.

When I can face all that without it being too destabilising I can start the next stage of the fight to get some therapy, but right now I just need your support as I try to understand and accept what is happening.

I hope that my response read as supportive, because that is what I intended it to be. Care in the US is a little different from care in the UK, and I can only speak to my experience, but, I also have the experience of relying on community resources and state-funded clinics where I am not always in control of what services I receive (as I'm not in a position to pay out of pocket for care). When I received the DDNOS diagnosis, I was under the care of a therapist who didn't return emails or phone calls, and then my therapy with her ended after one more meeting and I was left in limbo for three weeks while the clinic tried to find a new therapist for me to work with. This sounds like nothing compared to your situation, but I did "go it alone" so to speak with the diagnosis for a period of time, and I know how hard that was. I'm so sorry you have to go through that.

I want to be supportive. What can we do to be supportive? Is there anything that would help?

 

[Sandstone]

Yes, thank you @theshadowoftheliving you did read as supportive. I may just be being volatile, because every time I try to think about all this my thoughts run in many directions at once. I found myself today representing this physically. Every time I made the beginnings of a move to do one thing, I thought of another and began to move the opposite way.

I don't know what would be helpful. I don't know what is the usual way of of managing this. There doesn't seem to be anything out there about what to do next, and I work better with something applied to do.

I'm doing my best to block it all out, but I'm pretty sure that isn't a healthy approach. It is being too skilled at that which has brought me to this diagnosis. I'm fluctuating wildly between believing it and agreeing this is a good explanation, wholly disbelieving it and thinking I must have lied or dissembled, and thinking that there must be a better explanation of all the things that have seemed so normal to me. Things like my vision slipping out of 3D, or like my ability to switch off from an argument and feel nothing about it. There are lists of these, and I want to go through them and unpack how clear an indicator each is.

I want to know if the DBT skills I've been working on are actually a good idea. So much of distraction and soothing could be being used to promote a dissociative state. Am I doing myself harm by practising those things?

I want facts, instead of this jumble.

 

[Sandstone]

I can't remember if you feel like you have alters/others/parts or not.

When someone suggested building a relationship with my inner child I threatened it with a knife if it made demands on me. So it isn't surprising that there is an aspect that holds a destructive view of me. I'm pretty sure there is something there, but I don't want to know and can block it out by day. The report says "A deeply held fear of being aware of the full array of her thoughts, feelings, memories, might mask the full extent of her inner distress and turmoil that she seems to manage and keep at bay by ambiguity, intellectualising, avoidance, denial and dismissive strategies" At night there seems to be more around, emerging either s dreams or when I am awake at 3am. It feels dangerous to look at this though.

I in fact am the same person I was before the diagnoses. I think identity related info when one has identity related issues is always going to be really confusing.

ultimately a way of being told that I fit nowhere, that I wasn't this and wasn't that.

Yes, that feels familiar.I thought after the assessment I'd either have, as I hoped, clear confirmation that his was all manufactured construct, or a clear diagnosis that I could work with. Instead I have even more confusion. When I look at those Severe ratings I am honestly bewildered. I said so in the comments the Psychologist asked me for and he replied "The severity ratings are in line with the SCID-D diagnostic criteria and reflect your continuous efforts to manage your distress" Yet I usually find myself wondering about my low levels of distress, and doubting that I can even qualify for PTSD. I don't know about myself, and I thought before that I did.

I think you mentioned possible Anxious avoidant attachment and that usually means we are doing a fair amount of pushing away or not asking for support.

No, it was dismissive avoidant that I had identified myself with, and this psychologist was inclined to agree with. I don't feel any doubt about my husbands love for me. But I am aware that he doesn't know how to meet my needs in this area unless I tell him how to do it. I've never really understood why people get so wound up about wanting to contact their therapist out of session, and even now I'm not missing my old T as a person but as source of knowledge and understanding. The whole therapeutic relationship thing looks a bit emotional and suspect to me. So - I'm certain that this one of the things I need to work on and develop, and that it will be a key part of my therapy, should it ever happen.

All that makes it even odder that right now I know I need support, and am asking for it. Even odder, but very welcome to OH is that I need to be cuddled and held a lot. He has no idea why, I'm sure it hasn't even occurred to him that the outcome of of the assessment was a diagnosis and a report, and it certainly hasn't crossed his mind to ask.

Can you say more about the isolation?

It was my natural state as a child. I was the only child in a family of four adults, that had no contact with anyone outside. I developed all the social skills later and had good strong friendships . With the onset of PTSD I steadily cut out all peripherals, including friendships, although five years later three of my closest friends still make determined efforts to stay in touch. I was wondering if I had created therapeutic isolation, but on reflection that isn't the case. When ex-T was told she had to end our sessions it wasn't my wish or doing, any more than it was hers. As I have said, I have tried to have a supportive relationship with my care co-ordinator, but he has resisted.

This has been a bit of a chaotic brain dump.

 

[BuckarooBanzai]

This post may read as angry. I hope so, because I am furious, both that I am being let down so determinedly and that this thread is getting replies that assume I must be misrepresenting the position when I say I am on my own with this.

I hope you read my posts as supportive - they were certainly intended to be supportive. If I unintentionally triggered you, I apologize.

If it helps, I didn't interpret anyone's response here as indicating that you are misrepresenting your situation. It seems to me that everyone - including me - accepts your explanation of the situation.

I was wondering if I had created therapeutic isolation, but on reflection that isn't the case. When ex-T was told she had to end our sessions it wasn't my wish or doing, any more than it was hers.

What an interesting question. I guess all isolation is meant to be therapeutic - otherwise, why would we engage in it?

Regarding what you've written in this thread, though, I haven't noted any problematic (negative) intention to isolate. It seems like you have done everything within your power to engage with the therapeutic system provided.

Unfortunately, they haven't (yet) offered you what you need. I certainly hope this situation will change for the better soon.

 

[Abstract]

Its OK to brain dump.

Just to be clear I was not meaning your situation is normal in any way (therapeutic and professional lack of support and total isolation) other than it seemingly being usual for the Nhs at present. I was meaning that the system is f'd up royally in a horrendous way and this level of lack of support seems to be common for this sort of issue for here. I know a few people to go through the process recently (I think I mentioned on a thread of yours before so assumed you would know where I was coming from but I could have that wrong) and all have had similar stories to tell. In fact I think there are probably plenty of people who never get even to the first step. The person I know to go through it most recently had a diagnoses of DID and was initially turned down for all support completely (not even any community support), had the same story with his CPN who could only be described as being unsupportive rather than ever being supportive. Eventual Ok for treatment happened after much of the same appalling lack of communication organisation and with no support or help forward other than what came from him. He managed to get there in the end.

It is appalling and dehumanising and just plain terribly wrong. I was attempting to say that the lack of support is not your fault.

Sorry about the error re attachment. I was thinking that you wrote avoidant dismissive but wrong the wrong thing. I think its normal and important for anyone to have support for something like this,

I think it would be surprising if you had all your answers taken care of by the diagnoses as having a diagnoses that says you have internal disagreement usually means that there will be disagreement to big things, This is a big thing.

Personally think distraction and soothing is the perfect initial answer to overwhelm,

 

[BuckarooBanzai]

Personally think distraction and soothing is the perfect initial answer to overwhelm,

OH, am I ever big on distraction and self-soothing. Better than a hospital, anytime, and self-empowering.

 

[joeylittle]

. I ,alone, need to find a way to adjust to the idea that experiences which have been normal throughout my life are actually abnormal enough to be labelled as Severe forms of dissociation.

I relate. Different diagnosis, but very much relate.

When I had to wrap my mind around having been depressed for most of my life - that there were things I considered to be just how I was, or how the world was - were actually an illness - and aspects of it were considered shocking to doctors, even though I'd mostly figured out how to live with it - I got engaged in treatment right away because it wasn't avoidable. But it took me about a year to really wrap my mind around it. And I did not manage to commit to consistent therapy until I had gotten my mind to accept it.

I could take meds, do basic CBT, and otherwise - it was mostly trying to reconcile how I had lived for decades against what reality actually was.

Part of me - some tiny part - always suspected. But I shut down that little voice.

I think the older you are, the more terrifying it is.

It started to be ok when I began finding the advantages in having better answers for things...a little like finally getting to the right bookshelf in a library. When I learned more about what it is, how it works, what they do and do not know...and those clumps of information helped me answer questions I'd always had about how I didn't understand certain things that other people did...

It gradually became like a decoder ring. Rosetta Stone. A key that gave a context to what had previously just been thought of as "how I'm not normal".

But I get that it takes time. The only thing I can suggest is to take it on as a research project. That's what helped me, anyway.

 

[joeylittle]

I want to know if the DBT skills I've been working on are actually a good idea. So much of distraction and soothing could be being used to promote a dissociative state. Am I doing myself harm by practising those things?

Addendum - no, I wouldn't think so. Specifically because your distractions are generally things that require attention.

As long as you adhere to the DBT underpinning of mindfulness in all things - you aren't promoting dissociation. Dissociation is the opposite of mindfulness. And in this context, mindfulness is synonymous with non-judgemental attention. You could also call it 'noticing'.

If your distraction was to zone out in front of the tv, then yes, you would be encouraged to change that.

 

[BuckarooBanzai]

The only thing I can suggest is to take it on as a research project. That's what helped me, anyway.

That's exactly what I did as well. It was empowering to to work on my own, with the support of a skilled therapist in weekly sessions.

While initially thrown by my DID diagnosis, I soon learned that there were definite advantages to knowing.

Also, I actually came to appreciate my DID.

As long as you adhere to the DBT underpinning of mindfulness in all things - you aren't promoting dissociation.

I agree.

 

[Deleted member 38644]

The hardest part of diagnosis is being judged. There are people who will diagnose you and write something else in your chart that will prevent you from getting help. that's why it's good to get a second opinion. Nothing is fun when you go through stuff like this alone and through hell. It's all about money when nobody hear our cry for help until thousands of dollars later. I hope you receive the support and good luck on your treatment