Three Kids in a Trench Coat

So, recently we completed the fourth and final session as a participant in PREDICTSELF, a study into sense of self in people with DID, run by researchers from the Institute of Psychiatry, Psychology and Neuroscience (IoPPN) at King’s College London (KCL).

PREDICTSELF sessions 1-3: A recap

Session 1 was a SCID-D based assessment interview, that lasted about 3 hours, to assess whether a participant a) has DID, and b) is stable enough & has enough coping skills and support to be able to participate without being sent spiralling.

The SCID-D is a diagnostic interview protocol that includes many, many questions from research based questionnaires, and focuses on the 4 core ‘areas’ of dissociation:

• Depersonalisation / derealization (I don’t feel real / connected to myself, & the world doesn’t feel real / familiar people and places feel like strangers, etc)
• Dissociative amnesia (I can’t remember important events from my past / I lose time in the present)
• Identity confusion (I get confused about who I am)
• Identity alteration (I have alters and we take turns driving the body – my wording)

The last one, Identity Alteration, is the bit that distinguishes DID from other dissociative disorders.

N.B. it’s uncoordinated switching of drivers that is the ‘disorder’ bit specific to DID, not having alters or a system – the fam just wanted to remind me of that, we’ve had this discussion before xD It’s an important distinction when you consider that our aim in therapy, for example, is functional multiplicity, not ‘becoming one’ – and this is the case for most people with DID once they’ve actually met & spent time with their system in a compassionate and understanding way.

*coughs* Anyway, tangent over…

We learnt during session 2, from the lead researcher, that the clinical psychologist who ran our assessment in session 1 was, “Extremely impressed by us & didn’t have any concerns about us participating…” honestly, I was surprised, I had to stop a few times because of floating off during the interview, there were all kinds of questions I didn’t understand & had to ask about, there were things I couldn’t remember… but I guess that’s the, “Yup, you’ve got DID” part…. and what she was impressed about was how we responded to the floating off, the forgetting, the confusion.

That’s an important thing to remember, I think – that every time you strengthen your coping & self-care skills, you’re making progress – even if you still feel like a bit of a mess.

We’ve been doing the work, and apparently it shows.

Anyway, second tangent over…

Session 2 was a series of experiments involving pictures of either our face, or our friend’s face, and the faces of strangers, in a series of discrete judgement (this or that) tests. It was about 3 hours again, and honestly, the most gruelling of the sessions – was definitely going cross-eyed by the end xD I won’t say more while participants are still being recruited.

Session 3 was another series of tasks, but this time while in an EEG cap (the conductive gel they use is really cool on the skin btw, it was really nice in the hot weather). You can watch your brain activity in real time as you blink, or clench your jaw (the readings go wild during the second one…)

It’s actually a really interesting was of doing neurofeedback – which wasn’t the point of the session at all… but by the end of study debrief at the end of this session, the lead researcher had about 5 new significant research questions /directions for the future… turns out we should probably get more involved in DID research, I think we’d probably do very well there xD (we’re a PhD Psychologist who’s led international grant funded research programmes in somatic conditions, visiting lecturer at KCL, we have DID, and currently unemployed… I’d say our brain is hungry for action, and we are uniquely placed to do well here.… watch this space, maybe…)

Sessions 1-3 were in person at the IoPPN in London.

The fourth and final session: “I can’t remember”

Session 4 was a shorter, remote sessions with the Clinical Psychologist from session 1 (Emily, a wonderful & warm person who we very much enjoyed speaking to, despite the sometimes difficult material under discussion).

We were advised beforehand to make sure we had something grounding planned for afterwards, as this session added context by asking broad questions about trauma history, essentially.

There were four questionnaires – we had to pause part way through the second, when I started floating off after one particular question (that I don’t remember).

The third was the interesting one for me. We ended up skipping it entirely, on Emily’s advice, after we found ourselves completely unable to answer question 1. The questionnaire asked about a series of relational situations between us and our parents at a point in childhood, and how often they occurred (the options were something like, “Not at all / Once / A few times / 5-10 times / 10 – 20 times / 20 – 40 times / 40+ times / Didn’t happen, but had happened before”).

We’d been asked to chose an age based on some criteria I can’t remember (dissociative amnesia… paaaanda…), I chose 8 years old.

So the first question rolls around, and I have to estimate how often [x] had happened around age 8, using the response options above.

I tried to remember…. and realised I couldn’t.

I couldn’t remember [x] happening at all at that age.

But I didn’t answer “Not at all” because I also realised…

I couldn’t remember anything else about being 8 years old other than a couple of still-images of other difficult stuff I already knew about.

In fact, I realised I couldn’t remember much about being younger than 10 at all – just a few more stills or short loops of odd things here or there… I know my memories after 10 / 11 aren’t much better, either…

Yeah, I told Emily this and she was like, “Let’s skip these questions… they’re all like this, and sounds like the others won’t be any easier for you!” so we did, and that was appreciated.

As Emily had said several times in the session 1 assessment interview, and repeated here, “This is all helpful information – knowing that you can’t remember is definitely helpful for me, and something we’d certainly expect to see with DID – so there’s no need to try and force it”

That’s a really important point when it comes to assessing for DID generally – what happened is far less relevant to the diagnosis than knowing that you can’t remember. Dissociative amnesia is core symptom of DID – so not being able to remember isn’t some personal failing, it’s information & something to be understood with patience & compassion in its own right.

In conclusion

Taking part in DID research, when run by a team of dedicated, passionate & compassionate professionals, who put your wellbeing first, can be an interesting & rewarding experience.

Over the course of the study, it’s felt validating, I’ve felt listened to, learned a bit about what’s going on in the world of dissociation research right now (before it’s even published)… and future publications on DID research will, in a small way, be based on us…

When you’ve struggled a lot with the doubt and self-dismissal of, “I must be making this all up”, being part of something like this can be really affirming.

That’s my experience, anyway.

If you’re curious about participating in research, but aren’t quite sure what’s in it for you (a very valid thing to want to know!), I hope our perspective helps give you some idea of what it can be like.

As for us… well, I’ve been sent info on another study taking place at Cambridge, so I might see what that’s about… and maybe in time start thinking about applying for some research grants of my own in the area…

Until next time – take care of yourselves, kiddos

Riley & fam ❤