Misunderstood and misdiagnosed: Life with Dissociative Identity Disorder
DID affects 1.5% of the population but few people understand the devastating impact it has on a person’s life. We learned more from a Sheffield woman who believes she has the condition.
Dissociative Identity Disorder (DID), formerly known as Multiple Personality Disorder, is a sometimes controversial psychiatric diagnosis. Many people don’t believe it exists, while others think it is a manifestation of something else. However, DID is a legitimate mental health condition. Mental health charity Mind says:
And the NHS says:
UK stats are difficult to pin down, but a US study suggested that 1.5% of the population have the condition.
Amber Ainsworth realised they had DID two years ago. They have a number of 'alters' (alternative personalities) within their overall 'system' (the body and mind that they all inhabit). Each has a different name, age and personality, and the alters all appear to have had a role to play in Amber processing trauma she went through at the age of two.
She explains, “I'm Amber, the one that does massage therapy and myofascial release. Penelope is this troubled genius, who is amazing and tenacious and got my degree and writes so well, which is where Mia and Maya get it from. They’re just spewing poetry on Instagram. And I just let them get on with it. It's processing. It's good for us all and it's raising awareness.”
Amber explains DID from a personal perspective:
It was through their work in myofascial release, an alternative therapy, that Amber became aware of the alters.
For those who remain sceptical about the diagnosis of Dissociative Identity Disorder, Carolyn Spring - an author and trainer on trauma issues - says the following:
Writing would prove to be an important tool for Amber and their system to process what was happening to them.
“We wouldn't know anything that had happened if we hadn’t written it down.”
As it is a stigmatised and misunderstood condition, people being misdiagnosed is a particular concern for Amber.
“How many people are walking around with diagnosis of borderline and bipolar and it doesn't matter what they do, they're not going to get better because they're treating the wrong thing?”
In fact, Amber themself still does not have a formal diagnosis. Despite having a psychiatric nurse who firmly believes that Amber has DID, a psychiatrist instead diagnosed mixed dissociative conversion disorder after an hour and 20 minutes on the phone. Amber describes the doctor’s report as “horrific”.
“He thinks I'm the cliché, but he's the cliché. He's given me [a diagnosis of] false memory syndrome, projective identification - that I saw others like me and decided, manifested it.”
Because Amber now believes they understand what is going on in their mind, a formal diagnosis is not the be all and end all, but a formal diagnosis would provide some validation. They are waiting to hear back from Sheffield’s Single Point of Access, where people in a mental health crisis are referred.
At this point in the conversation, the alter Carys, who sounds excitable, joins in. She talks of some of the other alters, including Kai, whose intrusive thoughts joined in with self-destructive thinking of her own.
Speaking of Amber, Carys says, “Poor Amber, all these years going through life with this. We're lucky to make it this far. We're not through it.”
Life has not been easy for Amber, from their initial trauma at such a young age to the experiences of amnesia that ultimately gave way to an understanding of their current mental health condition.
I point out that it’s actually pretty resourceful of a person’s brain to say “nope” to an unbearable situation and to fracture, but that this cleverness has ultimately led to larger problems along the way.
Amber agrees: “Our brain got so effective. ‘Alright, this happened but we can't emotionally deal with this. So let's just compartmentalise it and put it back to sleep’.”
Asked what helps, Amber is clear: “Dog, yoga, family, Instagram, writing, writing, writing, writing, writing…
”Support from friends, too, even if they don’t fully understand: “There’s something really special in just being able to see someone else's pain and say, ‘Okay, I don't understand it. But I see you.’”