Does EMDR for Dissociative Identity Disorder work?

At the end of the first part of this interview, Chloe had just explained how treatment from the Maudsley in London had been 'left in the pile' from the Clinical Commissioning Group (CCG).

Not long after, her wait time with Assessment and Treatment Service's (ATS) complex trauma service, was finally up. Not before, however, her lead practitioner at the time was unexpectedly changed. She had something really valuable to say about this experience:

“I'm not someone that would get bothered by it. But she told me in the last session, “By the way, it's our last session,”, which was fine with me because I didn't feel attached to her. But it was a bit weird. Because they're working with this kind of three-stage model of post-traumatic treatment: stabilization, safety phase, trauma processing and integration of memories. And, this three-stage model is often done with different people, which seems to work against the kind of feelings of safety that we're trying to establish, and that treatment itself, constantly changing people, which I thought it seemed really counterintuitive.”

But her work started with the clinical psychologist she had been promised and Chloe was told she would be offered EMDR (eye-movement desensitisation and reprocessing) which is a supposedly hyper-effective trauma therapy.

Did you have any choice in terms of what kind of therapy you were being offered?

“No, it was just EMDR.”

Later in our conversation we discussed how this lack of choice was potentially quite problematic, but Chloe also had some really positive take-aways from her time doing EMDR. Firstly, the woman who was providing the therapy had a lot of experience working with DID.

“It was really great to speak to someone that actually did understand and was willing to confront it rather than just allude to it. Whereas previously with the CPN, it was very much, “if you do the thing that could be dissociation”, not willing to acknowledge it, even though I was diagnosed twice. Whereas with the EMDR therapist, she'd say, “when you dissociate”, actually acknowledging it, which was really validating, and I think it was helpful to feel like I was being proactive in treatment too.”

Chloe only had two in person sessions with the EMDR therapist, before Covid-19 hit, and that obviously, changed everything. As part of the therapy, she was given a tool that she still uses to this day, a book called ‘Coping With Trauma Related Dissociation’. The book and workbook, has since become a go to for Chloe which she still reads weekly, for guidance and to continue developing her coping skills. She cites being able to work through this book with someone who was very knowledgeable about the disorder as being the most beneficial element of being in therapy.

Ultimately however, Chloe found EMDR to be too destabilising, and felt that memories were being brought back up without being able to process them properly. This destabilising then led to a series of non-epileptic seizures, resulting in Chloe having to leave her then job.

Receiving any treatment or getting a diagnosis for her non-epileptic seizures, also presented its own host of difficulties and issues, as well as an experience at A&E during a particularly bad seizure where a number of staff repeatedly invalidated her experience. This, as with some of her earlier experiences with GPs is a clear evidence that healthcare staff in general, need to be more trauma informed.

Dynamics of trauma & the right to choose what therapy you receive

To finish we circled back round to her experience of having EMDR therapy with a DID diagnosis.

Out of interest, how does EMDR work with a DID diagnosis? What if mid-session, you dissociate and switched to another part of yourself. How does that dynamic get incorporated into EMDR? Is EMDR for people with DID different?

“It’s quite controversial to offer EMDR for DID, the view is that because of the amnesic barriers between parts, it's just potentially more destabilizing. Because of that, with DID there’s the potential to be retraumatized multiple times”

“The EMDR I did, it literally only covered about half an hour of 15 years of trauma. So it wasn't much at all. And that took six months. But in terms of that particular memory, it didn't make it better. It made it worse. But I was willing to kind of have it made worse for the skills that I got alongside it. Which kind of you shouldn't have to have that payoff.”

So you ended this in 2020? How do you feel like about it now? Do you still feel like it was worth the negatives?

“I'm glad that I did it because of the skills I gained from it. Although I felt like it was risky to do it, given I had DID, I understood that risk.”

In light of this statement I made sure to ask Chloe if she understood the risk due to her own research or, whether the CPN and/or the therapist she started seeing made it clear too. Unfortunately, the former in this case is true.

Revisiting this element of choice with the EMDR therapy, Chloe said this:

“I felt like if I said no to doing EMDR I would be labelled as being a “difficult patient”. I think for so many women and non-binary people, there’s this knowledge that if you display any signs of emotion, or contesting your treatment, then you're labelled as having a personality disorder, which is often misused to negate people’s trauma and deny them access to services.”

In response to this I remarked that this is a really problematic dynamic to be placed in, within services, as someone who has experienced trauma. Feeling as though you have to say yes to something, otherwise there’s a possible threat of any support or treatment being taken away, is in of itself not conducive to trauma recovery.

Chloe’s story with services, up until the day we sat down to talk about it is a long and arduous one to have had to withstand. As with many people who experience long-term mental health issues, it is ongoing. Eventually she reached a point where she realised being out of therapy and learning how to integrate living with DID into her life, was the most beneficial place to be.

However, from mental health practitioners using invalidating language to GPs lacking, what some might call basic trauma informed practice, Chloe’s story and journey to diagnosis and treatment is full of examples where services could and should be doing better to accommodate for those living with mental health conditions that lie outside of depression and anxiety.