My treatment journey through Madness.

The distress, Madness, disorder, illness – call it what you will – we go through can be helped. We can learn to live skilfully but so many don’t get the chance.

I was recently asked what type of therapy I did for Dissociative Identity Disorder (DID) and how the early period of discovery of our DID went and the answer made me realise, afresh, how bloody lucky I’ve been with treatment. 

I started off with private psychoanalytical psychodynamic therapy.  This was because *something* has always been wrong on and off since childhood & I did the NHS counselling, CBT, life coach etc over the years and nothing worked. I did the depression medication too and that didn’t really work. 

So this time, after the latest breakdown, for no apparent reason I was like I want the in depth stuff to get at the root of my problems. At this time I didn’t know anything about dissociation. Anyway we did this for about a year and I got worse. 

For me traditional psychoanalytical psychodynamic therapy with little relational aspect to it, a lot of blankish slate interaction and digging into the past just threw me off the deep end. It was very bad. I was, we now know, dissociating badly, poorly grounded, trauma was thrown up, I was incapable of dealing, we were switching. Work (and life) went out the window. But everyone was like therapy is hard, it gets worse before getting better etc. So I stuck it out. I gave up work (mostly). Spent my savings on therapy. This lasted about a year.

During this time I began to experience (but without any theoretical knowledge or language to explain what was happening) parts making themselves known (at least 1 of which was a bad experience), and parts taking control (SI) along with depersonslisation/derealisation and amnesia for things done, and me being out of control or far away. 

I explained it all to my GP (was in there like 2/3x a week) but not in DID language.  I was a mental health newbie – oh those heady days of ignorance. Those awareness campaigns are not as pervasive as those of us in the MH system think they are. Despite regular breakdowns over the years I was barely aware of even depression.  But anyway, as a small example of what I had no language to describe to my GP, I would enter the inner world and talk for hours but I thought it was normal meditation, and told him I was meditating loads. He was probably thinking great – self help and self care. 

This endured until a friend was like one can’t meditate for hours if you’ve never done it before and one doesn’t talk to people when doing so. I was like…oh…but I just continued to call it meditation – what do you do when you don’t have the words? So I normalised it as my type of meditation as if I was not truly mad. 
During this time my GP pointed me in the direction of CPTSD (as pyschoeducation). All this time I had refused referral to secondary care, hospitalization ie any escalation of care as I was deathly afraid of sectioning. So the GP just did the best he could & of course I was still in therapy 2 or 3x a week ostensibly getting treatment. He kept me alive, out of hospital & helped me be at least a little bit open to trusting medical professionals. 

I can’t remember what I told my therapist during this time.  She doesn’t do diagnosis or use any medicalised or pathologised words. Which I’ve found hard at times. Like just tell me already what you think is wrong with me! On reading about CPTSD and assessing my difficulties I thought DBT was the way to go. Thought what I was experiencing was more BPD like. I.e. serious SI, emotional lability, abandonment issues. Or at least those were the issues that were preventing me working & living.

I’ve never (much) minded the actual parts. I had NO idea, no words, for what was happening dissociative wise. I asked my GP a few times if I was psychotic cause, of course, voices = psychosis. He said no. I think it was because I had fine reality testing & he knew how to call ‘me’ or at least one of us more adult back so we could be fine with him. At some stage I did ask him if I had DID and he was like no it’s a creative way you’ve developed of dealing with distress.  It was a hard time that I’d never want to repeat. 

I was eventually referred to the HTT who would like call every day for a while. Some were good; most were ok, a few were crap. It was something though and I needed something.  Then I moved on to secondary care at the PD pathway. The clinical psychologist at the HTT warned me that referral to the PD pathway would mean a BPD diagnosis. I was naive and was like but it’ll get me treatment so what’s to fear? He just looked at me. I didn’t understand. Plus I’d discovered that I already had a *diagnosis* of BPD from like 5 years ago no one had ever bothered to tell me about. So what did I have to loose?

Anyway I have a NHS PD psychiatrist now – we meet every 3/4 months & talk for 20 mins. No medication save for diazepam prn. We had a rocky start but tbf to him, within the systemic constraints he faces and an underlying disbelief of DID he’s been ok. Responsive. He gave a working diagnosis of both DID & BPD but takes a very robust approach to ‘it’s all you’ and the way in which he evidences his care. I tend to ignore the former aspect of him on the basis that he’s not giving me day to day care. The latter we have difficulties with. PD pathways, or at least my corner of it, are not kind to those with attachment and developmental trauma. But he’s getting better. Or I am. We even discussed my adverse transference to him last session. 

So anyway, during the HTT time and waiting for the referral I did an assessment for a full fidelity DBT programme privately. I wasn’t waiting for the NHS to get around to actual treatment.  During that I told the assessors my experiences and they were like WOAHHHH. In an extremely nice way. They said DBT is contra indicated if you have a dissociative disorder so go off and test for that first. So I did (private) and that was positive for DID. I’m eternally grateful to those assessors. They saw. They named. 

While I waited I did a lot of reading and educated myself. That has been invaluable in my healing. So, so invaluable. If I can understand I can help guide or facilitate change. For me the diagnosis was magic. It explained what was happening. It made the unknowable known, gave it words & most importantly gave us a way of healing. I can’t say I welcomed it but it explained stuff that was there anyway so I was pragmatic. I was suffering with the stuff anyway but now I had a whole arena of scholarship to figure out what’s wrong & how to be well. 

This is not to say there was not and still is A LOT of denial and fears that I was lying and making it all up deeply deeply subconsciously. So lots of uncertainty as well from me. Others were like errr heeeeloooo? We are here…? Also fear. I’m deeply afraid of the loss of control (to do bad things).  My therapist went to at least 1 conference on treating dissociative disorders so she educated herself and some serious supervision. I had/have serious attachment to her & while trauma and DID is no where within her speciality. She is a very good therapist at all the other stuff and they say the therapeutic relationship is the most important thing soooo….we stayed with her.  We recently had a massive rupture around threatening behaviour. We’d be out on our ear in the NHS, which does not, it seems to me, hold risk in the same way, or would recognise and bring to therapy Winnicott’s hate in the counter transference. 

We changed therapy slowly. Out with the digging up the past and lots more just being there. She’s still rooted in a psychoanalytical psychodynamic framework but I’ve dragged her into a much more relational, responsive way of interacting. She’s never been much of a one to teach for example ways of grounding or see I need it and help with it in session. I’ve had to do that. Which is irritating at times. But she’s been very open to different ways eg I’ve brought in art, I’ve brought in toys, I colour in session, we had a tea party once. She was supportive of me looking for an art therapist at the same time as her and also working with a ‘listening too’ service at the same time. From the beginning she’s been open to and welcoming of all parts. Though she has a bad habit of referring to us all as one (the ISSTD guidelines which I theoretically accept but we don’t all feel to be applicable though some agree with her on this). 

We are aiming for integration – not in the sense of fusion but in the sense of removing the dissociative barriers so I can remember life now & feel. That is what I want. To remember and feel. We do safety & stabilisation and also a bit of stage 3 (engaging with life) as she is keen to strengthen the getting on with life side (get us working consistently even if part time, discovering what we like, etc).  This has taken close on 2 years (safety and stabilisation). Its been a long long road and one I have a deep terror of repeating. A lot of our healing work is through the therapeutic relationship and my poor therapist has withstood some tough shit from me. It is also done through recognising transference and enactments in my wider life (e.g. with other medical professionals) and seeking to heal through those good enough caring relationships. She’s been responsive to some things and firm on others (eg email boundaries). Yet flexible if I’m in crises. A lot if it has been her just being there, lots of ruptures and repairs, me and now us trying to reparent ourselves by observing her relationship with us. 

In covid times she went very basic and directive eg get out, see people, exercise, work. I went transiently psychotic & delusional due to lockdown pressures so she had to roll back therapy to the basics. That was fun times.
I no longer know what to call her modality. It’s a very eclectic mix. Responsive to where I am. We’ve drawn in IFS & schema approaches to understanding. She’ll do CBT and DBT type work. But it’s working for me and for us. This, not manualised therapies rigidly adhered to, is what works (at least for me) for complex trauma. 

We are tending to the view that all this (people inside my head) is just a different way of being in the world and trying to make our peace with it. To appear as a singlet to many eg at work but more open with close friends. I’ve my reality and others, e.g. my psychiatrist has his reality & the two don’t really meet. He seems to have accepted that it doesn’t really matter what reality I live in as long as there is integration. And presumably as long as I’m not actually overtly mad in his reality. 

Outside therapy hours I do yoga (the restorative type eg yin, breathwork, very slow flow). I also do somatic movement (pre covid). I try to do meditation at least 1x a week. I try to get exercise/walk. Rhythmic movement really helps me. All the crap ‘they’ tell you works does work (for me) but it works in the framework of 3x therapy a week, GP calls fortnightly, seeing the Listening Place person fortnightly and psychiatrist quarterly.  They are an adjunct not a substitute for what has been an extensive containing framework of care. 

I also bought stuff for those inside so they can have what they want/express themselves including the wee ones. I carry a stuffed toy to work (hidden). The point is I’ve embraced it all as a way to learning to live skilfully & it’s working (I hope). Not trying to conform to a neurotypical norm. We talk, negotiate what we all want. I’ve worked hard to understand & get on with what the literature calls persecutors & they’ve worked hard to understand their issues and move away from that. None of this ‘CONTROL’ your voices shit.

I see all this as part of the treatment – it’s a whole life thing & not just done in therapy or psychiatrist hours. It’s been hard but I can see we are growing & healing even if very slowly and a trillion steps back for every one forward. 
But I think I’d be dead if I didn’t have that containing framework that is helping me live skilfully. I won’t ever recover. To what? The dissociative mess we were before? But we are becoming well. And if we can others can. It’s not rocket science NHS. 

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