"Our attempts to get an accurate diagnosis"

We have been trying to get a diagnosis of DID so we can access appropriate help since early 2021. We were offered an assessment in November which was over the phone, we questioned how efficiently DID can be diagnosed over the phone but were told it can be.

They were half an hour late calling which exasperated our anxiety. We found them to be immediately invalidating and quoting out of date knowledge. At the end of the traumatic one hour and twenty minute unstructured assessment we were so dissociated we were unable to remember what had happened.

They repeatedly said that DID was rare, while some of the latest findings suggest it affects 1-3% of the population - it’s as common as red hair.We were told that we couldn’t have a diagnosis of DID as it isn’t in the ICD-10, which is right, but on the 1st January 2022 the ICD-11 was released, in which DID is now a diagnosable disorder, and services who are keeping themselves up to date have been diagnosing DID for months/years in anticipation of this change.

It took a month for us to find out what was in the report, as we were bounced back and forth between our GP and SPA - neither who would even advise us of the diagnosis we had been given, let alone the contents of the report.

When we got the report we found that it entirely invalidates our experience, it diagnoses us with: “Mixed dissociative (conversion) disorder including symptoms of multiple personality disorder. Mixed personality disorder with traits of emotionally unstable, histrionic and anxious avoidant personality disorder”. We don’t understand how a diagnosis this comprehensive can be achieved over the phone in such a short space of time. There is no explanation of how or why we have mixed dissociative (conversion) disorder.

The report states that we have projective identification - that others told us we have DID and we then manifested it. He questions that the abuse one of our alters, the host and alter who has lived most of the life, remembered in 2019 might be a false memory. We have a trauma holder who held the memory of that abuse for 36 years, she caused the decades of anxiety and depression and we are still trying to heal her. Another alter went to the police about the abuse. We are waiting to give our evidence - with a report that suggests it’s a false memory.

The report states we cannot be self aware, when it had been explained to him the efforts it took to start to find her system, and the months of working with the first ‘found’ alter, while thinking this was her inner child. We wrote about the experience of ‘splitting’ before we had heard of DID, or had connected to anyone with a dissociative disorder.

Since then, staff from Walkley House Medical Centre have been advocating for us with SPA in our attempts to have an accurate diagnosis and seek the appropriate trauma-focused psychotherapy we need. But we’ve been told we will not be having another assessment and should try to find help with the diagnosis we have.

We aren’t happy as we know of another case where there was an inaccurate diagnosis. 

We worry how many others are suffering because of the lack of knowledge about dissociative disorders. We’re often suicidal and suffering from the lack of support available. We don’t understand how a diagnosis this comprehensive and damning can be considered acceptable, without at least a second opinion to clarify.

We will be writing to yourselves, the service, maybe some MPs. It’s taken us a few months to recover from the trauma of a shambolic assessment and diagnosis, but we won’t be quiet anymore. How many people has this service given inaccurate diagnoses to?

- J. (I’m our writer and can mostly speak objectively about things, but obviously several of us are angry) on behalf of the others.