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Article
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Mental health

Myriad-minded miracle: knowing and caring for someone with dissociative identity disorder

Dissociative identity disorder, commonly abbreviated to DID and formerly called multiple personality disorder, is one of the most misunderstood psychological conditions. It’s by no means rare: dissociative identity disorder is estimated to affect up to 1% of the population, so it’s likely that you’ve met at least one person with DID, whether or not you know it – and whether or not they yet know it.

Popular culture and dialogue doesn’t often touch on dissociative identity disorder, but when it does, it’s often in the same vein as the way mainstream media tends to treat mental illnesses in general – incorrectly and with a tendency to both glamourise and to indulge in stereotypes. For instance, the recent duo of M. Night Shyamalan films, Split and Glass, deal with DID in a deeply harmful and ableist way, reinforcing false negative stereotypes and sensationalising the nature of the illness. The TV show The United States of Tara, while by no means as uninformed, still sensationalized and to some extent trivialised the condition, often reducing it to a punchline and encouraging amusement more than sympathy.

In reality, there’s nothing glamorous about DID. Aside from the fact that the genesis of the disorder is rooted in horrific childhood trauma, the daily reality of the illness is confusing and exhausting to those living with it, and – as I can personally attest – to those assisting them. By writing this article I hope to help can illuminate the issue, normalise it, and humanise those who suffer from it.

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Dissociative identity disorder is a mental condition in which, due to massive trauma at a young age, multiple personalities or ‘alters’ exist within the ‘system’ of the mind. During childhood, parts of our personalities exist separately from each other. Integration of these parts usually happens around the age of eight. In someone with DID, these parts do not integrate, and the mind retains and develops these multiple personalities in order to split the burden of trauma. It can take a lifetime for the main host to realise that the ‘voices in their head’ are actually distinct alternate personalities – other people entirely – and that memory loss, time loss, feelings of dissociation, and strange vivid ‘dreams’ are all symptoms of this condition. For my life partner Elin, this realisation came late last year. Since then, it’s been a lot of hard but rewarding work for all of us to come to terms with the reality of the condition.

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I spent the afternoon with Lily the other day. Lily seems like a good place to start. Lily is a kind, clever, delightful girl whom I am lucky to have in my life. When we go out she holds my hand for the walk and chats happily about anything and everything. She looks to me when crossing the street. I dress her up warmly before we go out, although she can tie her shoes herself. When in crisis, Lily knows how to call me on the phone. Lily’s age is around eight or nine. Sometimes she can talk with the vocabulary and knowledge of an older girl – perhaps a young teenager. The unique thing about Lily is that she will never age. She lives inside the mind and body of my twenty-six-year-old partner.

The diagnosis has explained a lot for me. Over the past six years, Elin has been a great friend and partner to me, but at times I’ve been very confused and struggled with our relationship. I struggled with how changeable they seemed – switching quickly between different projects and career paths, switching also between attitudes and priorities, making seemingly inconsistent or impulsive decisions, and even changing the way they interacted with me. Sometimes like I was simply a casual friend, sometimes more intimately and enthusiastically, and sometimes in a way that seemed suddenly unfamiliar or distant. Even their handwriting seemed to change often! We were also both distressed and confused by their severe and seemingly inexplicable amnesia.

It was only when Elin began to read about DID and realised that they themselves had the disorder that all these things finally made sense. Now that I know about the diagnosis, and the system is also aware of itself, the other alters can relax and come out around me without having to all pretend to be the same single person, and I’ve been able to formally and officially meet them.

Now I have ten great friends who happen to share the same body. Aaron is quiet and decisive; Derek brilliantly clever; Dodge a funny wildcard; Freya a motherly soul; Fionna hardworking and tough; Luna loud and bubbly; Mickey outspoken and confident; Lily a little treasure; Gee sensitive and intelligent. Elin as the host alter is incredibly emotionally resilient. Christmas shopping and Tinder dating are both a bit hectic. Parenting with DID is another article entirely.

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A good metaphor for dissociative identity disorder is the metaphor of the car. The car is the body. The alter present or conscious in the body, or ‘fronting’ – usually Elin at the moment, though for several years it was Gee – is the one in charge of decisions, the one talking and thinking and present. The one driving the car. Because the system’s DID tends to be ‘co-conscious’, there are often other people talking or watching from the front or backseat, and Elin is able to listen to and interact with them, although I can only see and hear Elin. I guess you could say I’m taking the order at the drive-through window: I can only talk to whoever’s in the driver’s seat. Sometimes Elin is in the back seat while Aaron or Fionna or someone else is driving, co-conscious, able to share experiences and help make decisions. Sometimes Elin is ‘all the way back’, in the boot of the car with no idea what’s going on. This results in time loss, memory loss and massive disorientation. Each alter has different mannerisms, handwriting, speech patterns, catchphrases, and sometimes different accents, and each is generally distinct from the others, because they’re separate people. They also have different sets of memories, different opinions and different outlooks on life. New alters can emerge or split off from existing alters, and alters can also integrate together. Complete integration into one cohesive whole is sometimes possible, but not always necessary or desirable.

My role as the system’s partner is complex and demanding. To the system I am in turns a best friend, a caregiver, a counsellor, a life coach, a romantic interest, and at times a financial provider. Sometimes I feel like a parent, caring for the relative newborn that is the ‘system’ as it exists now, finally fully aware of itself. We learn every day, still coming to understand the diagnosis, still finding our feet. We’ll be crawling for some time before we can truly walk or run.

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Living with a mental illness in the twenty-first century brings its own set of challenges, despite the advances that have been made in psychiatry. Something that I, Elin, and the rest of the system struggle with daily is Millennial nihilism. Our generation is undeniably disadvantaged: downwardly-mobile, impoverished and trapped by capitalism, saddled with lifelong debt if we study, and burdened with the knowledge that, due to climate change, we may well see our species go extinct within our lifetime. The only thing that’s guaranteed to us is uncertainty. Even to the mentally healthy these circumstances provoke grim rumination. For the mentally ill, it’s hard not to feel constant anxiety, and hard not to turn to the sick comfort of constantly joking about suicide.

Mental health care, I feel it’s an understatement to say, is not all it could be in New Zealand. I don’t think ‘crisis’ is too strong a word for the current situation. Our current suicide rate is the highest since records began in New Zealand, and our youth suicide rate is the highest in the developed world. Reaching out to emergency psychiatric services – difficult enough to even do in the first place – is always a huge gamble. The quality of care, both inpatient and outpatient, is incredibly variable, and there’s no guarantee of even receiving treatment, even when highly at risk. The ambulance is at the bottom of the cliff and it’s chock-full. Because of the unpredictability of the services it falls to me to give emotional first-aid, and I feel desperately inadequate at times.

I feel ill-equipped to offer many solutions, but I know some of the changes I’d like to see. I’d like to see education in high schools about mental health: proper education, such as a module on the symptoms and treatments for illnesses like depression, anxiety, bipolar disorder, post-traumatic stress disorder, schizophrenia, borderline personality disorder, and dissociative identity disorder. Not only would such education be greatly helpful and validating to those suffering, especially at such a formative age, but I believe it would also really help normalise these very real and relatively common illnesses. Stigma, fear, and misunderstanding around mental health is still worryingly prevalent. I hope that one day these illnesses can be mentioned in the same way that asthma or diabetes could be mentioned now. Imagine talking about your mental illness diagnosis without shame or fear of judgement. Imagine that anyone you talk to about it is familiar with the illness, and its etiology, symptoms, and treatment!

The collective social value of a higher standard of care for those suffering from DID would have the same benefit as a high standard of care for any mental health issue. For my own bipolar disorder, for instance, I’ve received an incredibly high standard of both inpatient and outpatient care over the last ten years. This has allowed me to be a healthy and productive member of society, and has also allowed me to help others through advocacy and through sharing the resources I’ve had access to. Of course, I’m aware that my value is not necessarily determined solely by my productivity, but it feels good to contribute. A society where everyone is well and high-functioning is surely ideal. And the social value of a well-cared-for, healthy person with DID is arguably even greater – multiple people with multiple skillsets in one package! I also believe that a higher standard of care would better place people like Elin and the rest of the system to advocate for their disorder, and in doing so, further help society by normalising and destigmatizing their disorder for future sufferers. Mental health advocacy is a true passion for Elin and the rest of the system, and they’re all very excited to have this article published – a meaningful first step, however small, in increasing awareness about the reality of dissociative identity disorder.

It’s early days for me and everyone in the system. We’re learning more every day about how things work and how everyone can work together and communicate in order to live the best, healthiest life possible. They give me a focus that I’m grateful for, a sharp clarity, a reason to push through the worst days, because the best days are incandescent.

 

Image: Anders Jildén

Overland is a not-for-profit magazine with a proud history of supporting writers, and publishing ideas and voices often excluded from other places.

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Rathlin Emerson an emerging queer writer of poetry, fiction, and non-fiction. Their passions include mental health and sex work advocacy, video games, and reading classical literature. They are from Dunedin, New Zealand.

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