De-Stigmatizing Dissociative Identity Disorder through Courage and Connection

Audio Here: https://youtu.be/dqnz-bjS1vo

Full disclosure, I am constantly learning (I think this is a great thing). If I thought I knew everything, I believe I would be in the wrong field. Keeping a curious mind without judging myself for not already knowing something is a delicate balance and takes intentional effort, but it allows me to grow as a ‘helper’ in this world. When I first learned about dissociation, I thought “yeah, this is something I have done when I’ve been overstimulated". What I didn’t realize is the stigma that was attached to dissociation even within the therapeutic world. When I began to hear stories shared by people with DID, I realized there was a lot I didn’t know about the “disorder” and that mass media had gotten a number of things wrong. Before you run to the DSM-5, if you want to learn more about dissociative identities, systems, and DID, see the list of attached resources at the end of this article. To oversimplify things: Dissociative Identity Disorder (DID), formerly known as Multiple Personality Disorder, is a mental health condition where a person experiences two or more distinct identities or personality states, often arising as a survival mechanism to cope with persistent trauma that begins in childhood (i.e., 6-8 years of age). During this time, the unconscious strategy of Dissociative Identity Disorder or Other Specified Dissociative Disorder (OSDD) is developed. Ongoing research is exploring if this age range starts even younger than age six. It is important to note, this can include any relational trauma that the child cannot cope with in any other way. Also, two children can experience the same abuse or neglect (physical or sexual abuse don't have to be present), and one might develop DID and one might not. 

A few months ago I shared a post seeking out stories of hope, inspiration, resilience, or anything along those lines. I am a firm believer we can learn so much from each other, in addition to the other ways we grow through life’s circumstances. Charlotte replied to my post and wanted to share a message of hope, one that reminds people “you are not alone” and to find support in connection and community. 

NOTE: Survivor is a DID system (Dissociative Identity Disorder) and may use “we/I” interchangeably. “We” refers to the collective of parts. 

Charlotte is a 43 year old who is completing a Masters of Social Work. With courage, she shares her story of trafficking from infancy to age 29 and continuing to experience abuse until age 37. She tells her story of exploring dissociative identities and connection through community. When Charlotte’s trafficker, who was a family member, died, it took five months for her to realise something was not right, she noticed that months had gone by without knowing what had happened during that time, and then she sought therapy. The next day the world went into COVID lockdown, allowing her time and space to heal from her experiences. During the initial stages of our conversation, Charlotte mentions many privileges and oppressions that contextualize her stories. 

Q: Start anywhere that feels natural for you and we will go from there.

A: “I was born into sex trafficking and was kept in it for 37 years. I survived through dissociation and now live as a dissociative system. When I learned about my system in therapy about a year after my trafficker died; I thought I was insane. I couldn't talk about what I wanted in therapy, or really much at all. I felt it to be important that my therapist stuck with me while we together figured out what was going on. I didn’t know why it was important at the time. I was both terrified of being around her and desperate for her help. In hindsight it makes a lot of sense. 

Q: What do you want readers to know about dissociative identities or systems?

A: Everyone uses different language when it comes to “dissociative systems” or “DID,” and we use “dissociative identities.” People present in different ways because each system develops under unique circumstances. The abuse that a child faces and the circumstances around it will dictate how each part is protective and their initial role within the system. While there are some overarching similarities across systems, it’s much more nuanced and varied than how it’s often portrayed in film, television, or even academia. For us, a lot of the time we feel like ourselves and only one of our parts is the main one in the body at a time. But, we do experience something called passive influence a lot. This is when we will hear, sense, or physically feel others parts of us, depending on what is going on in our environment. We could even move or speak in ways that we wouldn’t, but that another part of us would like us to do. As we work on building communication, compassion, and co-operation amongst the parts of our system, this passive influence is more intentional, predictable, and functional. We also sometimes experience amnesia, to varying degrees across parts and over time. Amnesia helps to keep information separated between parts as not to overwhelm any one part. In the past, this was particularly helpful to ensure day to day functioning while abuse was taking place. In the present time, amnesia can be not as helpful in that it can prevent awareness of events, emotions, and daily activities. Amnesia in present time can decrease as therapeutic work between parts takes place.

The most important thing that I would like people to know is that people with DID are just people. We are not harmful nor criminals, as media portrayals may lead you to believe, and we are able to heal and live fulfilling lives, if given the opportunity to do so. Our brains simply happened to develop differently due to being abused. 

Q: How did therapy help you navigate this time in your life?

A: My therapist mentioned DID to me after a while in therapy and I remember thinking “what?” I had a bit of an understanding but not much. Once I started learning about it nothing felt off, but there was also a really big push to not believe it was true. That resistance was all the work of my protective parts. There was so much I was unaware of and it all started to come up; it went against the way I had been living. Therapy helped us each collectively identify what each of our parts’ perspectives were about each other, our past, and our present. And generally, our therapist was someone external to our system who was as consistent an anchor as possible to the present for us to come back to. We still rely on this today.

Q: When you first became aware of your system in therapy, you mentioned feeling like you were “insane”. What helped you move from that place of fear and confusion toward acceptance and advocacy?

A: Facing the fact that something is happening here I thought: “I can choose to listen to myself, choose to lean into what seems terrifying, or stay here, but I know I cannot stay here.” It probably took two years or so to be accepting enough of being a system and the causes that led us to be a system, going back and forth and in circles about it. That process was important because even if “I” accepted our system and our circumstances, it didn’t mean that anyone else in my system did. If I tried to move forward, others who weren’t ready would make that clear through any number of ways that one can communicate. When engaging with outside people in life and learning how to relate with others as a system, every time I met someone it felt like a test of sorts. I would think “are you someone we can start being present with?” because that’s how important it felt to be visible to others while also being unsure how people would respond to us and what being more authentic would be like. Our system is mostly all hidden which is purposeful, no one can see it. This is very true for myself because growing up I went to school, did activities, played sports, so that everyone would think my life was normal. Everything was hidden in plain sight. At times, it gets hard to understand when parts are trying to be protective through hiding, because, while it may have been protective when abuse was taking place, it doesn’t necessarily feel helpful now. It runs deep and it shows how much protection was needed in my lifetime and those parts are still there. Understanding and having compassion for these protections has helped us begin to address our underlying fears of being seen. Experiencing outcomes in the present and noticing how they are different than they were in the past has also helped us to be increasingly confident about who we are, our relative safety in our current life, the value of internal and external relationships, and our ability to engage and even enjoy life.

Q: Have you noticed a change in the last five years? What has that been like?

A: There has been a ton of positive change in the last five years, which is not that long compared to my whole lifetime! We are more aware and we are being who we were meant to be. We are choosing things for ourselves and experiencing life; it’s very cool and also overwhelming, so pacing has been key to not burning out. I have also found an online community that had people talking about experiences similar to mine/ours. I was terrified at first to engage in this community - it was the first place where we started engaging with external people about DID. Even before telling our husband or friends. It took about a year to start talking in community Zoom groups. Still scary but not terrifying. I started talking in small, small, tiny steps. Feeling emotions and physical sensations in even smaller steps - we’re still practicing this! Now I have regular reiki sessions, shamanic healing, psychotherapy, exercise... I tried things in therapy and elsewhere to help us feel safe in a world that we learned can be safe enough but still have many stressors. Eventually we found a voice to say yes or no to what was helpful for us at any time; learning it's okay to have a unique and ever-changing path. People who care about me stayed and boundaries were or continue to be negotiated with those who weren't able to be supportive. Feeling the care from others was terrifying and is still hard, and also feels like the acceptance and validation we need to know that we're living life how we want to. 

I want to emphasize that all of the change that we have experienced over the last 5 years was not straight forward or easy. It is challenging to communicate in words just how difficult it has been. Especially when you believe that you are the only person who is going through what you are, and especially when you are even uncertain about what exactly it is that you are going through in the first place. And, change still happened in a way that we hoped it would. We can look back to see that change, and we have supporters now, like our therapist and our online community, who remind us about that when we need reminding. For the first time that we can recall, we are looking forward to the future because we know that we have the autonomy to move through it in our own way. And change will continue to happen because of that.

Q: You’ve explored other healing modalities—reiki, shamanic healing, psychotherapy, and more. How did you begin to trust yourself in deciding what was helpful or not for your system?

A: I started with talk therapy which seemed really hard because we didn’t want to talk. Our past abuse conditioned us not to. And, even though we didn’t “want” to, we wanted to. So we thought “How can we communicate in other ways?” We had to be creative in communicating with ourselves. Once we learned we needed that, we practiced different ways to communicate with each other and with our therapist in therapy sessions. Our online community also gave us a place to share experiences and hear other people talking about approaches when therapy is not accessible. We adopted a theme of “trying”, but only if we all agreed to trying and what that would look like. We started super duper small, would sit for a second, draw a line, leave it, look at play-doh instead of pressuring ourselves to build something. When people say “start small” it’s different for everyone. For us, we wanted to only do something that felt “okay” to do. I tried reiki because someone I knew offered it to me and we were able to build trust and she knew about my system. Because of our success with reiki and how it helped in a different and complementary way to therapy, and also because of hearing others’ experiences, we decided to try shamanic healing. It is also important to speak boundaries in some way even if that means writing it on a piece of paper if you are able to. If something isn’t working for you, take a break, it’s okay, it doesn’t mean you’re doing it wrong. It took us a long time to be able to understand what boundaries were, that we were worthy of having them, and that we mattered enough that we could choose…anything. We didn’t know it at the time, but in hind-sight, those were some of our initial steps towards being able to try new things that we hoped would help us live the life we want to.

Q: How has your academic experience been as an MSW student?

A: I had an instructor who is by far the most real person as instructor, by no means is an academic teacher; more of an activist. We sit, talk, learn, and do what is morally and ethically the way we should be doing things as social workers. I have gained a lot of confidence to know it’s okay to call things out that don’t sit right with me professionally and learn how to do that in a way that people can hear and feel comfortable enough to hear it. As a student/new person in this field, and knowing how important empowerment is, that feels really good. Because we have been having so much hesitancy knowing how much harm can be caused, and really struggling to find a place that fits.

My classmates and instructors have generally been amazing. Knowing that not a lot about dissociation, dissociative identities, DID, OSDD, etc. are taught in school, and that many therapeutic modalities and approaches that are taught actually exclude or don’t consider people with dissociative identities in their studies. I have tried to share our experiences and the plethora of online resources that now exist. This is yet another example of us testing life to find out what is safe enough for us to do, building upon everything else we have learned for ourselves. 

Q: What are your hopes for the future?

A: We are now hopeful that we can find something meaningful for us and other people that aligns with social work values. Maybe owning our own business and that feels okay. We will have to explore how power dynamics and carcerality will impact our career choices and how we operate as a social worker. We are at the point now where we need to be mindful of where and how we spend our limited energy, what situations we are willing to put ourselves into, and whether and how those situations will impact our mental and physical health in the long-term. 

Q: Do you have a final message to readers?

A: Receiving a small ounce of compassion from another can offer enough hope to move, especially when your wounds are relational. Also remember that the Western world as we know it is optimized for conformity. If you don't fit the mold, you're made to feel as though something is wrong with you and that you should hide or isolate until you can be fixed. There’s nothing wrong with you. Learning who you are and then finding like minded and like hearted people can offer a unique opportunity to thrive authentically. It's not easy and can take a long time, bravery, and many tries, and involves vulnerability and risk, and it can pay off in unimaginable ways. You know yourself best and can learn what you need and don't need in your life at any given time. Trust that over anything else. You will benefit and others who truly care about you will respect you for it.

–

I was putting a ton of pressure on myself to do Charlotte’s story justice. I felt such deep appreciation for her for her willingness to share her story and be part of this passion project with me. She was gracious and reassuring as we collaborated to bring this story together.

She shared in a follow up email: “It is a bit rattling to recognize what I/we are sharing and I wanted to share that the approach you are taking with this has indeed been helpful in creating a space that feels safe enough to share what we want while also maintaining boundaries that we want. That is a huge thing for us and thus important to share with you.”

I am very aware it is my privilege to hear, hold, and share stories. 

With gratitude,

Alex

Resources 

These are intended to be a starting point for your exploration into dissociative identity resources. There are plenty more great ones out there, and some that are less so. Please keep an open and critical mind when taking in information, prioritizing your own experiences and, if you have them, those of your clients.

• Petals of a Rose (versions with or without a flashback scene to sexual abuse): https://www.dylancrumpler.com/petals-of-a-rose 

• Myths about DID: https://youtu.be/miStPkUB_lM?si=MV2PM7xfCd8Z8Msu 

• Changing the Narrative around dissociative experiences: https://youtu.be/IcP8Q3TaKn0?si=lXtyrg6cKrQ3uGIv 

• Self-diagnosis and DID: https://youtu.be/hiXsO3jn8fE?si=tD_oXw3QrzH7P0Eg

Podcasts by dissociative systems

System Speak - the first DID podcast, starting in 2014. A mix of personal experiences, interviews with both professional and lived experience, and clinical discussions.

Healing My Parts - A therapist with DID who shares tips, insights, and interviews to help those with DID and therapists.

A Couple of Multiples - A couple, both with DID, one a therapist and the other a therapist in training, share personal and professional experiences on diverse DID topics.

Braving the Way - A DID system who underwent a lot of system and life changes throughout their podcast. Interviews with professionals about different healing modalities.

Books by dissociative systems

Patchwork quilt - J.D. Clark

The sum of my parts - Olga Trujillo

Dear little ones (1,2,3) - Jade Miller

Recovery is my best revenge - Carolyn Spring

Unshame - Carolyn Spring

One soul multiple expressions - Adrian Fletcher

Dissociation made simple - Jamie Marich

Me, not-me, and we: A lived experience workbook - Emma Sunshaw

If tears were prayers - Emma Sunshaw

Perspectives of Dissociative Identity Response - Emily Christensen

Losing the Atmosphere, a memoir - Vivian Conan

An Infinite Mind an organization that promotes awareness of and education about DID from the perspectives of survivors, clinicians, and supporters