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Mia and Jessica: Living with Dissociative Identity Disorder

This story has a trigger warning

Mia and Jessica tell their story of how they ‘worked out’ they were a Dissociative Identity Disorder System. They explore how they have worked through inner trauma, and external difficulties with gaining a diagnosis. Trigger warning: reference to suicidal feelings

Mia and Jessica

We’re a DID (dissociative identity disorder) system from Sheffield. We started ‘working out’ that we’re a system in 2019 when Amber, our host (the alter who lived most of the life), remembered early traumas while training in myofascial release, aged 36, after years of depression and anxiety. Just over a year later, after spending much of 2020 on the sofa, along with the rest of the world, she realised she wasn’t alone in her head and started communicating with Isabel.

She assumed Isabel was an inner child, as we hadn’t heard of DID, and had no idea that someone could be many people. Initially communication was very hard, and Amber used hypnosis techniques to bring Isabel closer to her and into the body. Sometime in December Amber told our Mum and husband that she’d found an angry teenager in her head who ‘took control’ when she’d been drinking. On Christmas Eve, I, Mia, appeared. I was six and Amber thought she had regressed. The next day she was aware I was still here. She and our husband went home for Christmas Day and Amber pretended everything was ‘normal’.

A couple of days later, I split, suddenly there were two Mia’s, the other Mia chose the name Maya. In January Amber spoke to an old friend about all the ‘inner children’ she was working to heal, the friend told her we weren’t inner children and directed her to DID! Soon after this, there was a big acceptance event after Amber denied our existence for a day and when I escaped, I cried so much and made her promise never to deny us again.

After this, our only major trauma holder made herself known, she’d cried in the head since we were two. Throughout 2021 we had countless alters make themselves known and spent most of the year deep in healing. We found our own processes for trauma processing and have processed our traumas writing (hundreds of thousands of words which eventually got collated and narrated into our book ‘The revelation’), walking, yoga, and music.

We thought we were starting 2022 positively, but the first trauma wasn’t healed, and it was many months of work to heal that, and the existence that Berlou lived for 36 years. We wrote over 1000 poems during that time, processing the trauma, depression and suicidality. Suicidal thoughts are something that we’ve lived with our whole life, and healing those feelings is hard. Even though we’ve healed so much, are all entirely accepting of our system, have a supportive family, and have achieved so much, we still have waves of significant depression and suicidality – probably because we have alters with co-morbid disorders which still need treating.

While all of this was going on, we fortunately had a therapist through a local charity, Share Psychotherapy, although this wasn’t the trauma informed therapy we needed. Our journey to an eventual diagnosis of DID was long and hard, and we only got there because we were able to advocate for ourselves and fortunately regularly saw a mental health nurse at our doctor’s practice. He gave Amber invaluable validation and support, his believing her was huge in her/our acceptance of this reality, and his guidance and support while fighting with the system was priceless. DID and dissociative disorders are plagued with doubt and denial, it’s part of the disorder, as it is covert by nature and natural that all alters mask as the host, and the host is often the last to know about their own system.

We’ve had two assessments, the first was horrifically traumatic and conducted over the phone. We questioned whether DID could be diagnosed over the phone and were told it could be, we’re certain it wouldn’t have mattered what we said to that psychiatrist as he was so out of touch with up-to-date knowledge and had no idea how to talk to someone who is dissociating and switching. He kept repeating that DID is rare, it isn’t, it’s uncommon, but not rare. His report gave us ‘mixed dissociative (conversion) disorder’, ‘traits of multiple personality disorder’, and a load of personality disorders. It suggested we had projective identification and false memories. It took months to recover from. But we did, and after our mental health nurse was told no – we couldn’t have another assessment, we advocated for ourselves and sent a comprehensive complaint. A month later we got a phone call from the Single Point of Access and were advised they were looking for someone who could diagnose DID, and that that psychiatrist was no longer working with them. 6 months later we were assessed in person and DID or Partial DID was diagnosed. We’re still waiting for funding from the CCG (Clinical Commissioning Group) to be able to access specialist therapy.

It’s been an actual living hell. Most of the time we have wished we are not alive, and there have been attempts during this time. We got through this thanks to luck, having a husband with a stable income so we have been able to not work, and finding the things that work for us – writing, yoga, dog love. We aren’t stable. But we know how hard this has been for us, and worry how many people are struggling and unsupported. Within DID groups on Facebook, there is a steady stream of posts saying, “My GP says my symptoms make no sense”, “I’ve been told I don’t have DID by a mental health nurse”, “I’ve been prescribed psychotics because DID is too rare”, etc. This kind of invalidation can exasperate doubt and denial, and we are very aware of the detrimental effects misinformed professionals can have.

We’re trying to raise awareness, by sharing our story/ies and poetry, we’ve written an open letter which we are trying to work out what to do with and hope to help others navigate their own healing and advocate for themselves.

Mia and Jessica

DID We Write is a website which shares the personal stories of people with DID. Have a look at their website for more stories, information and advice, or to submit a story.

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