A Co-Writing Multitude Container

Answering my most FAQ about dissociative identity disorder (DID)

Feb 19, 2023

If Marsh Mail were a TV show, this would be a special episode. Not a musical one, though. Let's forget we ever let that trend happen.

I've been writing publicly about living with dissociative identity disorder (DID) since summer 2022, but none of that writing has had the sole intent of education or demystification. Now, several months, several essays, and one DID + pop culture essay collection book deal later, I've gotten a lot of the same kinds of questions about how a life with DID works.

One reason that I often don't answer these questions right when I get them is that I genuinely don't have to. Education is labour, and takes time. Another reason is that I don't ever want my experience of DID to be misconstrued as a universal experience of DID. Everyone with a dissociative disorder will experience it differently, and I'm not in the business of pretending I'm a trauma psychologist who has the expertise to speak to a variety of experiences.

I can speak for myself (well, my selves), and that's all I can speak for.

That being said, I chose some questions that I've gotten over the past months that I think have interesting answers.

Before I start, you might want to look at the pieces I've already shared:

An essay about dating with DID

An essay about writing with DID

An interview with Psychology Today that goes over the basics of DID

A subjective, hand-picked FAQ

How do you keep from switching between parts (alters) during readings, classes, and other public events?

There are sort of two questions hiding in this question:

1.) Have you ever switched between alters during an event before?

2.) If not, why is that?

The answer to the first question is yes, I have, but it doesn’t happen very often. When it does occur, it isn’t noticeable to anyone but me. If my husband was in the audience, he likely wouldn’t even be able to tell. DID is often covert, which is why so many people diagnosed have no awareness of their system of alters before diagnosis (not the case for everyone, but for a fair amount of people). As a protection mechanism, some of the different parts of compulsively act like me when I’m in public. Think of it as a kind of masking. It takes a lot of therapy to learn how to unmask—to teach these parts that, in private, they don’t have to pretend to be me.

The reasons that switches don't often happen for me during things like readings, meetings, or work, goes back to the primary function of the alters in a DID system. My brain has created these separate parts of consciousness so that I can survive—so that I can be functional—and each of them formed with an original, specific reason for functional existence. Those reasons vary from keeping a trauma memory separate from my awareness, to interacting with certain types of people, to working or being a part that does certain work tasks, to playing as a kid would play. The only reason an alter would switch out during a situation that they were not created to navigate on their own is if they were triggered out. If I’m doing something that I need to be present for, and there is no trigger, I usually won’t switch.

If all of your alters are parts of the same whole, are all of you doing the writing that gets published?

Yes and no. I talk a little bit about that here. Sydney Hegele as a person, as a human body, is the author. I (Sydney) am doing most of the writing. There’s this thing with DID called co-conciousness or blending (I experience it often), where rather than a full switch, two or more parts (or alters) are conscious of what’s going on at the same time, and are influenced by one another’s memories and mannerisms.

People with DID often refer to conscious control of one’s body as “the front”, like the front seat of a car. If we were to say that sitting and writing is driving that car, then I am in the driver’s seat 95% of the time. Often, there are parts of me in the passenger seat, or in the back seats, while I write, which comes with influence. Parts can have their own reactions or get triggered by the things I’m writing about, separate from my own reactions. Writing fiction with DID is like driving with the radio on high and a bunch of rowdy kids fighting in the back. They can’t “help” me write, but I can hear them while I do it.

Writing non-fiction is a little different. As someone with a dissociative disorder, my life memory is split between parts, and each event in my life has multiple perspectives. I’ve written about events that I consciously know happened, but don’t remember all the details of. I’ve also written about events that I remember, but only remember watching from afar, with no emotional connection. When I write essays, the first thing my editors often suggest is that I “add more of how I felt when this happened”, which is difficult for me to do, because often, someone else felt it for me. In that case, I have to write either with the appropriate part in the passenger seat, close enough that I can hear their additions inside, or co-consciously, where I can see and feel flashes of memory that I never had access to up until that point. In this case, no, I’m not really writing by myself. But all of us make up Sydney Hegele, the author.

I get a lot of questions about Stephen in particular, who is mentioned in that first Catapult essay:

Does Stephen write the newsletter with you?

Yes.

Does Stephen know who everyone in your life is?

Mostly. Sometimes, there is less of an emotional connection because he doesn’t have a large bank of memories to draw upon when it comes to certain people. But if we go back to that car metaphor, Stephen is in the passenger seat 85% of the time.

How would I know if I were talking to Stephen, or talking to you?

Unless you’re my husband or my therapist, you wouldn’t.

What does Stephen think about you writing Bad Kids?

Honestly? He worries he won’t be of much help, because he does not think he is creatively inclined.

This is the question I get most often:

I've done some research on dissociation, and I think I have a lot of dissociative symptoms. How do I seek out a potential diagnosis?

My recommendation is always to approach the journey to a potential mental health diagnosis with a symptom-based posture that could lead to a number of different diagnoses, rather than setting your mind on one particular diagnosis.

If you’re experiencing dissociative symptoms, it’s best to speak to a therapist who is trauma-informed. If you’re seeking testing for dissociative disorders, the only way to do that in Canada is to undergo a full psychological assessment with a psychologist (not a psycho-therapist or social worker) who specializes in dissociation, or who runs their practice out of a trauma centre that deals with dissociation.

Full psychological assessments in Canada are incredibly expensive (I’ve had two in my life, and each cost about $1600 total). These assessments are strictly for anxiety disorders, mood disorders, trauma disorders, and disorders that sit on the dissociative spectrum, and they test for everything at once. They use several interviews, a variety of tests, and multiple peer reviews from other trauma specialists to create a final report, which sometimes includes a diagnosis (or several). Neurological disorders (like ADHD, which I also have) are tested differently, and are often more expensive if tested outside of University healthcare systems.

For privacy’s sake, I don't think it’s appropriate to disclose where and with whom I received my dissociative disorder diagnosis. What I will say is this: If you have the money, go get a full assessment at a trauma centre. If you don’t, work with someone who can help with symptom management (a lot of social workers and psycho-therapists are trauma-informed).

Therapists are expensive too, though, so I’ve provided some resources below.

The Dissociative Identity Disorder Sourcebook

Coping with Trauma-Related Dissociation: Skills Training for Patients and Therapists

Me, Not-Me, and We: A Lived Experience Workbook for Phased Recovery from Complex and Relational Trauma with Dissociative Identity Response

The Complex PTSD Workbook

Living with the Reality of Dissociative Identity Disorder: Campaigning Voices, edited by Xenia Bowlby and Deborah Briggs, is a valuable book.

System Speak is a podcast hosted by Emma Sunshaw: Diagnosed with dissociative identity disorder, Emma and her system share what they learn along the way about DID, dissociation, trauma, and mental health.

The Plural Association is a non-profit community offering a range of resources and opportunities for education and connection.

https://www.isst-d.org/

https://www.beautyafterbruises.org

Fictional Recommendations:

Third Person, by Emma Grove

Moon Knight, Marvel, Disney+

Freshwater, by Akwaeke Emezi

Excerpt from my interview with Psychology Today about finding community:

A non-profit-run community that I always recommend to other systems is The Plural Association. There are also private Facebook groups for people living with DID and OSDD.

Ultimately, when you engage with any community, but particularly when you engage with a community surrounding mental health, it's important to ask yourself some questions:

How is my participation in this community helping me on my healing journey?
How am I ensuring that I'm getting my medical/formal diagnostic information from a professional source?
How do I ensure that my understanding of DID as a day-to-day experience of mental illness is represented by a variety of voices from a variety of intersections rather than just one?
What boundaries can I set in place for myself (how often I'm online, who I follow, what kinds of conversations I engage with) to ensure that my experience of community is one that helps instead of harms (myself and others)?

If you have more questions, you can ask them using the comment button below: