Content warning: this article briefly mentions suicidality and childhood abuse.

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The 5th of March is the recognised Dissociative Identity Disorder (DID) awareness day, as such, we wanted to talk about the disorder with someone who has lived experience of a DID diagnosis, as well as unpacking how the assumptions and misconceptions about DID make it incredibly hard to both receive a diagnosis as well as get treatment.

Chloe, is a young woman who received a diagnosis of DID in 2018. We caught up on a bench in one of Brighton & Hove’s many public gardens. Chloe’s journey of realising she was experiencing something distinctly different to mental health conditions she knew of, aka: depression, anxiety, to finally receiving a diagnosis, only for that diagnosis to be brought into question and being asked to complete another diagnostic assessment, is full of frustration, doubt and invalidation.

Chloe had a lot to say about her experience, which although in many instances negative, provides essential learning for people within mental health services, as well as standing as an overall incentive to make services generally more trauma informed. Because of this, we have split this interview into two parts, this is the first and the second will be posted later this week.

First, we started at the very beginning.

What first motivated you to seek support for what you now know, are DID symptoms?

“The first time I realized that something was going on that I need to be addressed, I was about 19. And I went to stay with my sister at her University, and I had loads of bruises on my arm I couldn't explain. And she told my mum, that night I dissociated and called my mum feeling quite suicidal.”

Chloe spoke about how this was the moment that resulted in her and her mother speaking quite frankly about her needing to get help. She also recalled how, although she hadn’t heard of DID before, she understood that what she was experiencing was not the same as other common mental health disorders.

Eventually her parents brought Chloe to a private psychologist, a fact she acknowledges, she was extremely privileged to have been able to do.

“I was planning on never actually talking about my DID symptoms to her. I just thought I’d talk about my mood. And it was only until a few weeks in, I was talking about the incident that led to me getting therapy with her. She asked me, “Is it often that you don't remember things?”

Chloe remembers this as being a real pivotal moment, it was here that she was first told about DID as a possible diagnosis

“The psychologist at the time said she was going to send me over something from Mind. And it was a kind of booklet about dissociative disorders. And she just said, “did any of this resonate with you?” And it really did. And I was just like, oh my God, what do I do now?”

What Chloe did next, was what many people do in the UK when they realise they might be experiencing mental distress or a mental disorder, she contacted her GP at her university.

“I was seeing this psychologist privately but I was aware that I didn't want to have to pay for it. I felt very strongly that I should be able to get a diagnosis through the NHS. I was really adamant on doing that even though I knew it would be really difficult.”

From here, Chloe got in touch with her GP at her University. She delivered a letter to them from the psychologist who had suggested she might be experiencing symptoms from DID. In an appointment with this GP, she described the first in a long line of strange, inappropriate responses from healthcare professionals to her history and possible diagnosis.

““Crikey who hurt you” he said. In the letter, it kind of alluded to childhood abuse and he then went on to say: “Who abused you?”.

What did you say?

“I said, “Oh I don’t know”. Because at that time, I didn’t. I knew something had happened, but I couldn’t identify anyone. He didn’t seem to understand how that could be possible and was very confused by it.”

And really, why does it matter who?

“Exactly, it was really strange. From there I was referred to wellbeing who rejected me from any of their services on the basis of being “too complex”, so then I was referred through to Assessment and Treatment Services (ATS) who said they couldn’t help me.”

This, unfortunately is a common experience for many people who have various trauma related mental health issues. People who experience trauma early on in life are often not in touch with mental health services until they’re adults, they most frequently come to services without an already existing diagnosis and find themselves in this strange purgatory where the usual primary care: IAPT or wellbeing services will not see them, for being “too complex” as Chloe said; but secondary services such as ATS won’t see them owing to their lack of a diagnosis of bipolar disorder, schizophrenia or a personality disorder.

After this first failed attempt, Chloe tried with another GP in her parent’s hometown whilst she was back for the summer between terms at University. This GP saw the same letter from the previous psychologist, and referred her through to a psychiatrist for assessment.

During this assessment, the psychiatrist denied any existence of DID, told her point blank it was actually epilepsy that she was experiencing, denied the possibility that she might have been abused and in Chloe’s own words was “really rude”.

From here, Chloe’s attempts to receive a diagnosis took a slightly unconventional turn, deferring away from the traditional path of manoeuvring through NHS mental health services. She tracked down The Clinic for Dissociative Studies in London and with the support of a GP the clinic requested funding from the Clinical Commissioning Group (CCG) to assess Chloe.

After a lot of back and forth, Chloe was finally assessed and experienced her first interaction with people who believed and validated her experience. She was diagnosed with DID and then the clinic moved to receive more funding, so that they could continue treating her.

The Clinic for Dissociative Studies had a therapist at the ready but were awaiting approval, again from the CCG, this request never went through

“They wouldn't reject it, because then I'd have a right of appeal. They just kept ignoring it. And saying that local services could offer me the same thing. And eventually after lots of back and forward with them, me writing letters to them, explaining what was going on…They decided that I shouldn't have been rejected from ATS. So, I eventually got put with a lead practitioner.”

This was a move in the right direction, but as far as Chloe’s experience goes, awareness of, as well as capability and capacity to treat DID is so low in the NHS that the practitioner she ended up seeing was not too familiar with DID.

Again, Chloe was faced with scepticism about her diagnosis. The CPN she saw once every two weeks would frequently say things like, ““If this is DID”, refusing to acknowledge the fact that I had been diagnosed with approval of the NHS.”

All of this, seeing the CPN once every two weeks and discussing grounding techniques with her, was in preparation to be seen by the lead clinical psychologist of the complex trauma service. This clinical psychologist was the only practitioner in the area who was equipped to treat someone with DID and issues as complex as hers.

This feels like to me, like a problem within itself. DID, and more broadly, dissociative disorders aren’t so uncommon, especially when we’re talking about trauma.

“It’s not that uncommon no…Later I got a letter saying the CCG has accepted some different funding, this time to get a ‘second opinion’ on my diagnosis, asking for a psychiatric assessment at the Maudsley in London.”

To Chloe, the motive behind this seemed pretty transparent at the time:

“They essentially thought that they could get me get a very specialist service, like one of the best in the country to basically say that I didn't have DID, so they didn't have to fund it. That was the underlying message I got. The veracity of my diagnosis was being brought into question. And the assumption was that I would have this assessment and be undiagnosed. But I had this assessment with a really amazing neuro psychiatrist, a really thorough assessment, she diagnosed me with DID and CPTSD [complex PTSD].”

After this experience, Maudsley themselves actually requested funding to provide Chloe with treatment, which, as with the request from the Clinic for Dissociative Studies was left in the figurative pile at the CCG.

Following this, Chloe finally started her sessions with the clinical psychologist from the complex trauma service.

We will be posting part two of the interview with Chloe later this week, where we discuss her experience of EMDR therapy as a person with DID.

If any of the content in this article has affected you and you need to talk to someone, you can call Samaritans on 116 123 for FREE 24/7.