“We had an 80 minute phone assessment which basically told us we are making up having DID.”

We have undiagnosed DID (Dissociative Identity Disorder). We have a diagnosis of Mixed Dissociative Conversion) Disorder and other stuff, but we’re pretty sure it’s wrong.

We first started working out that we have DID in October 2020, when Amber (our host and alter who has the body’s name) realised there was someone separate to her in her head. She had to use hypnosis techniques to be able to communicate with Isabel, before this time we all thought we were the same person. 

Amber remembered an early trauma in 2019 when training in myofascial release- this is a physical therapy that can release physically held trauma. After Amber and Isabel had been communicating and working to heal old traumas for a few months (they though that Isabel was Amber’s inner child), I came out, I was six at the time and Amber thought she had regressed, but no, it was me. I split a couple of days later making my sister Maya too. After that a friend told us about DID and we researched and found it explained our experience. 

Before we found out we are a system, we didn’t have many of the symptoms associated with it. Our amnesia is clever, when we switch enough is filled in that we don’t lose time but we have very strong emotional amnesia, and memories feel more like the knowledge something happened than an actual memory. The only time that Amber actually lost time was after drinking, which is normal so we didn’t think anything of it. Everyone just thought she was really moody and irrational at times. 

We have spent the last year healing trauma. In retrospect we see that Amber has been ‘gathering the tools’ to be able to do this for several years, without knowing why. We have processed our traumas using writing, poetry and journaling, music, yoga and walking. We have processed everything except the first trauma and we went to the police about abuse which happened to us when we were two. We had to see what would happen and they investigated, but recently ended the investigation due to there being no forensic evidence. 

Our life has been drastically altered. Amber is a different person and is now a we. We have been open because we’ve had to be to heal, and we have the ‘luxury’ of being safe and supported so we can be. We’ve been sharing our journey on Facebook and Instagram, we’re both Amber’s Alters and I made our DID.we.write instagram for my poetry. 

We’ve lost friends. It’s scary and weird I guess for people. But the friends that have stuck with us are amazing. Our Mum has been very supportive too. We’ve been trying to get diagnosed and get specialist psychotherapy since February 2021. We had an 80 minute over the phone assessment which basically told us we are making up having DID. It was horribly invalidating and upsetting for us, we were told we couldn’t have another assessment but we complained and now they are looking for someone with the expertise to diagnose DID for us.

Life is still very hard but we feel like we are through the worst of it. We’ve processed so much trauma and achieved so much with very little professional support. We are in the process of restarting our life, aged 39, and know it will look very different to the life that we lived before we found each other. We hope to ultimately help others struggling with mental illness and unresolved trauma, both using myofascial release and (assuming we eventually get an accurate diagnosis) hopefully helping others advocate for themselves to get diagnosed and access professional support.