July 27, 2016

So, seven years ago I was diagnosed with dissociative identity disorder (DID). No, I hadn’t heard of it either. I was 16 at the time – I was in an adolescent psychiatric ward, a secure intensive care ward, 230 miles from home. It was terrifying. Getting a diagnosis was a positive, a weight off my mind, it all made so much sense. I was given some literature to read and it was practically my life story. Then the journey really began.

Dissociative identity disorder used to be called multiple personality disorder, and although it isn’t considered a personality disorder, the previous terminology is a lot easier to explain. I have ‘alters’, nine very different people sharing one body. There are four main ones and five that tend to sit in the background. They routinely take over the body and live their own lives; their own friends, views, names, ages, genders, accents, likes, dislikes, allergies, sexual orientation, etc. We are different.

DID is characterised by severe amnesia, and when one alter has been present, you may have no recollection of what has happened; imagine blinking, but when you open your eyes – its four hours later – you’ve got changed, been out, purchased things, interacted with people, attended a therapy session – and you have no memory of any of it. You become an investigator, piecing clues together to find out where you have been. Unfortunately we don’t get on with each other, or communicate well between us, so it is a constant war – it’s something we’ve been working on in therapy for years.

DID, for me, is a debilitating illness. I’ve been admitted to psychiatric intensive care wards countless times, and sectioned endlessly. Each alter experiences their own issues such as psychosis, obsessions, compulsions, flashbacks, depression, anxieties, self-harming, suicidal ideations – it becomes exceptionally complicated. You attempted to take your own life, but you have no memory of doing so, and you personally have no intention of doing that. Other alters can become extremely violent and aggressive towards other people or property, and again this can end in physical interventions that you have no recollection of. You experience your life, through the story you are told by others and collecting clues.

Day to day life is difficult, trying to manage your time when nine people are fighting for it is almost impossible. DID switching (changing from one alter to another) can happen in a number of ways for a number of reasons, but triggers are normally a part of that. Triggers can be anything, a smell, a taste, a texture, a visual, a noise – I find myself planning things just to avoid them. And the anxiety that comes with wondering if you are going to switch is also very difficult to manage.

DID is a rare diagnosis, which makes it even more difficult to talk about. It’s hard to explain and even harder to understand. Maintaining relationships can be difficult, turning up to work every day is a lottery, hobbies are few and far between. Like many mental health conditions, there are up days, down days, and those days in-between. After seven years, I’m still very much battling the feeling of embarrassment that comes with mental health conditions, and the view that it is a weakness is one I’m constantly trying to change in myself.

DID is doused in stigma – it’s still in its early stages of being researched and understood, but even more importantly (and sadly), believed. There are many people, including professionals, that don’t believe in DID. I’ve met many of them, and, after working with me for many months, they’ve all changed their minds. As they so ignorantly put it, it’s something you have to see to believe.

I’ve been told since I was 16, that I will not be able to do things because of DID: get any further education, get a job, drive, maintain relationships, stay out of hospital. Well, I’d like to say six years on that I’ve ticked all the boxes, but mental health likes disappointing people. I’m working on it.

The advice I would give to anyone trying to support someone with DID, in any context, professional or personal, is listen. Learn about DID, ask questions.

Treat each alter individually, have a different relationship with all of them.

Do not compare yourself: I know that you are a different person at work than you are when you visit your grandparents or when you go out with friends – it’s not the same, not even close.

Don’t challenge the whole concept: it’s an illness – it just is, and it’s sometimes the only answer we have.

I’ve started writing my own blog, sharing my experience in a little more detail, if you want to check it out I'll share the link.

Thanks for reading,

Stay safe and smile.

https://definedisorder.wordpress.com   @AlexElk123 

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