My rare medical condition means I become Tildy the 7-year-old one minute & then angry teen Isabel as my husband watches
AT first glance, Amber Ainsworth looks like any other woman in her 40s but strike up a conversation with her and it soon becomes clear all is not what it seems.
One minute she’s a poised 42-year-old but the next she switches into an excitable seven-year-old who talks quickly and giddily about her favourite dolls.
That’s because Amber has a condition called Dissociative Identity Disorder (DID) which means she has 10 different identities all vying to take control of her body.
It’s nine times more common in women than men and it is believed to affect just 1.5% of the global population.
Amber’s identities or ‘selves’ communicate with each other constantly and take it in turns to be the ‘control’ of Amber’s body.
“It can feel like you’re talking to someone in a different room,” she explains.
“It’s like you’re behind a glass wall and you can never quite reach them but you know they’re there.”
Whilst some people with the condition have as few as two different identities, or ‘alters’, Amber has dozens.
These range from ‘hosts’ who are the most active alters to ‘littles’ who are children, as well as ‘persecutors’ who produce negative thoughts.
Alters can be any age or gender, and each could have their own accent, memories, fears and passions, with the dominant ‘self’ switching throughout the day.
Amber’s are varied, and she swings between a little girl named Tildy, to a creative teenager named Mia who has several published poetry books.
Together the alters or ‘selves’ are known as a ‘system’ with the group agreeing on the collective name of ‘Astra’ and referring to themselves as ‘we.’
Unlike those with schizophrenia, people with DID don’t just hear disconnected voices – they live with a “system” of fully-formed identities which are constantly vying for control.
Speaking to Fabulous as part of Life Stories, our new YouTube series which shares the extraordinary lives of ordinary people, Amber says: “It’s not something you ever expect to deal with.
“You don’t expect to share your life with other people who are also inhabiting your body and your brain.”
And share her life she does – during a conversation she is clearly being interrupted as she turns her head to speak to someone who isn’t in the room.
“We even change the direction we turn our head depending on who we’re speaking to,” one of her alters Berlou, jumps in to explain.
“We look to the right when it’s Mia and to the left when it’s Tildy for example – it just shows how physical they feel.”
In 90 per cent of cases of DID, identities are formed during childhood after a trauma, and each alter develops its own memories and experiences as time passes.
This was true for Amber, who lives in Sheffield, South Yorks, although the extraordinary condition didn’t make itself known until she was 37.
She explains: “We lived to the age of 37 without knowing that we had DID, without any idea that we could even be many people within one body.
“I had struggled with my mental health my whole life and after a significant breakdown in 2016, I trained to become a massage therapist.
“Three years later I learned about a hands-on therapy called myofascial release, MFR and I went to America to train in it.
“It was whilst I was on a massage table with multiple therapists working on me, that I remembered a trauma.”
Amber says memories of child sexual abuse (CSA) at the age two began to surface which she believes is the trigger for her DID.
“It blew my mind that I was remembering this but I knew it was real, it was a physical memory,” she says.
“I just sat there asking myself what, who, why, when, how? And in my own mind, someone answered me in my head and they gave me a name.
ASTRA - AMBER’S ALTERS
Astra is the name of Amber's system, here are just a few of the alters they include...
Mia – current host, a version of Penelope, our most productive self.
Berlou – current host, first trauma holder and person driving the need to help other trauma holders.
Amber – ex-host, person who lived most of our life, massage and myofascial release therapist.
Penelope – ex-host, overachiever, probably suffers from bipolar disorder.
Caris/Isabel – Caris is a fusion of Isabel and Cara, Is is one of our protectors.
Maya – a split from Mia.
Jessica – the writer (a Penelope).
Berwoo – a non-traumatised version of Berlou, hilarious, has published two books of nonsense.
Tildy – A child (little) has written a book for other littles
Astrid – Little who loves dolls
Stef – sexual alter and protector.
“I then spoke to my mum and asked her if this particular man had ever had access to me and she confirmed he had.
“I did eventually go to the police and they were incredibly understanding and supportive.
“But unfortunately after three months the CPS took no further action due to lack of evidence.”
But while Amber had ‘heard someone’, her other selves remained silent until the following year as the world went into lockdown.
In October 2020, Amber “found” Isabel in her head.
It felt like trying to communicate with someone, but only one of you could be in the room at the same time.
Amber Ainsworth
“I became aware of her late at night. I had had a drink and I had had a smoke, and we started communicating,” explains Amber.
“I would normally black out if I drank but this time I remembered and I woke up the next morning knowing there had been this strange communication in my head.”
Finding it difficult to communicate, initially Amber and Isabel would communicate through written notes.
“It felt like trying to communicate with someone, but only one of you could be in the room at the same time,” she explains.
“I had assumed she was an inner child because I hadn’t heard of DID in spite of doing a degree in psychology and health in my early 20s.”
It was on Christmas Eve the same year when Amber was introduced to her third alter, Mia.
“I suddenly felt like I had regressed to a six-year-old and I found Mia,” she says.
“I was acting and thinking just like a child of primary school age.
“Again it happened after a few whiskeys and the next morning I got up and I was very grateful to realise that I was 38 again but I knew that Mia was present.”
It was at that point that Amber told her husband of seven years Ben, 42, and her mum, Doreen, 72.
“I told Ben that I found an angry teenager in my head who took control when I had a drink,” she recalls.
“He didn’t seem surprised, in fact he said it made sense because of the way my behaviour had changed.
“Eventually I confided in a friend and told her about what was happening. And she said, that’s not inner children, that’s DID.”
With no understanding of the condition, Amber and her other selves watched a YouTube video to learn more about the complex disorder.
“It was just a massive relief to suddenly have an explanation for what was happening,” she says.
However, getting a diagnosis was far from easy.
It can be something as small as the tone of someone’s voice or the way they look at you, but once your brain starts switching it’s incredibly difficult to stop.
Amber
Amber – and her alters – visited a GP and in November 2021 they were referred to a clinical psychologist for a phone assessment.
But doctors were left baffled.
Amber explains: “We were assessed and we we were given all sorts of other misdiagnosis such as false memory syndrome and variety of personality disorders.
“But we fought hard and we had many, many phone calls and sent strongly worded emails to Sheffield’s mental health centre Single Point of Access.
“Nine months later we finally got our diagnosis and we really needed that.
“Without the context of DID, it obviously felt like we were going crazy.
“It felt like I was losing my mind, losing my grip on reality at times.”
“Of course having the diagnosis didn’t change anything for us but it gave us the validation we so badly needed. “
While Amber has come a long way in understanding her condition she says it doesn’t make living with DID any easier.
“A switch can come out of the blue,” she says.
“It can be caused by a trigger and that trigger could be a negative trigger, it can be something as small as the tone of someone’s voice or the way they look at you, but once your brain starts switching it’s incredibly difficult to stop.
“Trying to prevent a switch has previously left us with brutal headaches.
The idea of being one person is terrifying and many people with DID would agree.
Berlou
“It can take minutes, it can be super fast. You can not realise it’s even happened and it can happen hundreds of times a day.
“Of course we are aware of each other and we are used to being in the same place at the same time so we’re fairly blended but at the same time we are totally different – I can’t pretend to be Mia and she can’t pretend to be me.
“It often feels like I am trying to drive a car, I can see the steering wheel but I just can’t get to it.”
DID is incurable but therapy can often offer a way to address the underlying trauma and move forward.
Berlou adds: “The aim is often to become one person in what is often referred to as ‘the final fusion.’
“We don’t hope for this but would like to become a functional multiplicity.
“There’s a fear of losing one another and we would absolutely miss each other.
“The idea of being one person is terrifying and many people with DID would agree.
“We’ve never been one person so the idea of that is as alien as being many is to others.”
While Amber’s selves are hoping to access EMDR (Eye Movement Desensitization and Reprocessing) therapy next year she says that her alter Mia has been key to healing their traumas.
Mia, a girl who talks much faster than Amber and swings her legs as she speaks, explains: “We’d discovered that writing was really good and I really wanted to be allowed to share wider.
“Eventually, after asking and asking, Amber let me open my own Facebook page and I shared a poem on there and someone said it was good.
WHAT IS DISSOCIATIVE IDENTITY DISORDER?
Dissociative Identity Disorder (DID) is a complex psychological condition that is mostly caused by severe trauma during early childhood.
The condition was once viewed with disbelief – including by the psychiatric profession.
Due to their dissociations, or separation from their sense of self, a number of DID patients are likely to struggle with memory issues.
In about 90 percent of cases, there is a history of abuse in childhood, while other cases are linked to experiences of war or health problems during childhood.
Treatment generally involves supportive care and counselling.
The condition usually persists without treatment.
“So we shared more and we have even published a few books of poetry. Poetry is really good because it doesn’t need to make sense.”
Amber and her selves say that social media has been where they have found the most support.
“We obviously lost a lot of our friends when this happened because we weren’t who we had been,” she explains.
“Social media is where we found the most validation and support actually in our community.
“We found Facebook groups and we met some people. A few of them we’re still friends with today, online friends.”
Amber says she is used to being misunderstood and maligned by both the public and medical professionals and is calling for more awareness of DID.
“The most important thing is awareness, that’s the first step,” she says.
“We would love to see decent treatment pathways come to fruition but that feels a long way off.
“For now we just need people to understand what DID is, how to approach someone, how to help someone who has switched, and how to identify it.
“For us that makes all the difference.”
You can read more about Amber and her alters on her website didwewrite.co.uk