Understanding Dissociative Identity Disorder Impact On Marginalized Communities OLGA TRUJILLO: OK, so today, we're going to talk about understanding dissociative identity disorder and its impact on marginalized communities. And I'm Olga Trujillo, I'm the director of education and social change at Latinos United for Peace and Equity, or we call LUPE. And we are part of Caminar Latino, which is a direct service program in the Atlanta Georgia area. Latinos United for Peace and Equity is a national training and technical assistance provider and connected to the local program in Atlanta. So I'm going to talk to you about dissociative identity disorder because I was diagnosed with it when I was 31 years old. So I'm going to talk to you about it from a lived experience of it and having gone through a process of healing. So let's get started. So I have a few goals for this training. One, to explore what DID is, so what is it and what causes it. And then also to examine the impact on people's lives, and in particular, on people's lives in marginalized communities. And then to strategize with you around what you can do to help. So DID is a severe psychiatric condition that is strongly correlated with the history of chronic and unremitting childhood abuse, characterized by identity alteration or confusion. All right, so basically, what we're talking about is when a child experiences ongoing trauma and can't escape it, one of the ways of coping is by creating a place in their mind where they can escape it. So when I was growing up and I was being physically and sexually abused in my home, I couldn't leave that home. So I made use of my creative energies, my ability to create imaginary friends, and created parts. It's a disorder that forms as a result of ongoing trauma in childhood. It forms if trauma begins before the age of eight or nine years of age. It provides an escape cognitively when there is none physically. And a person with DID feels as if they have within them two or more entities, each with its own way of thinking and remembering about themselves and their lives. So again, so if I kind of break this down for you, I think you might be able to see the connection to marginalized communities. So we're talking about trauma that begins in childhood, and most of the time what we're talking about with DID is child physical or sexual abuse or serious neglect. But that's because that's what's been presented to people, but we experience all sorts of trauma in our lives. And as a Latina growing up in Washington DC in the '60s, it wasn't just the trauma that was in my home but it was also the trauma of being different, of being treated different, of being seen as someone that was less than, of watching my parents treated as less than. All that comes together in the formation of DID and in the escape and the parts that I developed. So it's not something that you can kind of tease out, the racism and the oppression that we feel. But we treat it as if it is, and that presents a problem for people of color, for Black, Indigenous, and other people of color that end up with a disorder that's never identified and helped. The DSM-5 states that DID involves a, quote unquote, disruption of identity that's characterized by two or more distinct personalities. So the thing is in the DSM-5, there are three basic things that lay out what constitutes DID. So one of them is this, that you would have two or more distinct personality states. But I want to let you know that that's really rare for someone to just have to. I'll tell you that before I stopped counting, or at the point at which I stopped counting, I had 120. So the two is just to show you that there is a minimum of two, but it's not really common for someone to only have two. The disruption in identity involves a marked discontinuity in sense of self, sense of agency that's accompanied by related alterations in affect, behavior, consciousness, memory, perception, cognition, or sensory motor functioning. So basically, those are all the things that describe what makes up a person's personality, and makes who they are. So when I created the parts inside me to keep the abuse that I was experiencing, the trauma that I was experiencing, away from me, I created parts of me which is a little bit unusual. Most people create all kinds of parts that are different genders, that might be animals, inanimate objects. I wasn't that creative. For me, what I did was I had parts of me at different ages. So that first part that I created was when I was three years old because I was sexually abused by my father when I was three years old. That was my first memory and that part of me, I developed so that I wouldn't know that that happened to me. And that's a really, really creative coping mechanism, but it also can make it really difficult to function in the world. So that three- year-old part of me had, felt very different from me but still part of me, if that makes sense. And I'll kind of explain this as we go along. The DSM-5 also points out that for it to be DID, it involves recurrent gaps in recall of everyday events, important and personal information, and/or traumatic events that are inconsistent with ordinary forgetting. So I'll show you again how in my experience. So when I was 31 years old, I started having panic attacks and I went to see a therapist about it and then I was referred to a psychiatrist. And I worked with this psychiatrist for a number of years. And one of the ways in which he suspected that I had DID was that I could remember everything or lots and lots of things that happened outside of our home. So I could remember things in school, I remember playing with friends, playing sports, I remember a lot of all of that. But I didn't remember hardly anything that happened in my home. So those are recurrent gaps of everyday events, personal information, that are inconsistent with ordinary forgetting. Meaning, that most people will not remember just part of their experiences at certain ages, though, their memories will fade over time, but across the board, they'll fade. And that wasn't the case for me. I had blocked out the things that were happening in our home because those were the things that were so traumatic that I couldn't escape. So that I created parts in my head so that I wouldn't know that those things were happening. OK, so why do I think you need to know about DID? The studies show that in the US, somewhere between 1% and 3% of the population have DID. So there's as many as, according to studies which I think are way low in numbers, but they believe there as many as nine million people that could have DID. Without help, DID can create chaos, chaos and risk for the person that has it. And people who have it can experience additional challenges when in crisis. And usually, a crisis can happen when there's a new trauma or loss. And right now, with the pandemic, with the potential of people getting sick with COVID-19, that's the kind of loss, that's the kind of trauma that could really kick up chaos and risk for people who have DID. That's the kind of thing that can make it really hard for people with DID to cope. The other reason that I want you to know about it is because in the past 20, 30 years, there has been effort to undermine the credibility of those who have identified DID as a disorder, as something that people can do that that helps them cope, but then also that makes it hard for them to function. And there has been an effort to undermine the disorder itself. So there have been people that have been attacking the people who work with survivors who have DID, and then there are people who are attacking the diagnosis as being made up or planted in people. And this is a Harvard Review of Psychiatry article on dissociative identity disorder. It's really recent. It's, I think, it's 2018 or 2019, that goes through and corrects the fiction and the myth about dissociative identity disorder. And some of the people who have written this article are some of the best people in the world on this issue. So it really does exist. So how do I know? I know because when I was the general counsel of the Office of Justice Programs at the US Department of Justice, I started to have panic attacks and went to go see a therapist about the panic attacks. And then was referred to a psychiatrist. And I was diagnosed with dissociative identity disorder. And I was really, honestly shocked that I could have such a disorder because I thought that I had a really happy childhood, but I couldn't remember most of it. And come to find out that that's really unusual. So I know it exists, I have a lived experience of having it, of knowing what it's like to try to move through the world with it, and then to go through a healing process. And now, really, just living with it in a seamless way. So I was diagnosed in 1993, and I was diagnosed, I was really lucky to be in the DC area and to be referred to a psychiatrist who is probably now for sure one of the best in the country, if not in the world. And it just happened to be that I was referred to him. So I want to talk a little bit about the impact on marginalized community. So people from marginalized communities are likely to have experienced trauma in childhood. And if you think about it because of racism and oppression, because of the ways in which we are marginalized, the whole piece of the oppression is basically to look at us and look at our differences and to establish those differences as meaning that we are less than. And so families that experience this kind of oppression have a level of trauma and stress that can really wear the people in those families out. It takes its toll on people. And then if you add that there is violence in a lot of our homes, that level of trauma is also happening, and it's not always the violence in our homes that might cause people to create parts of themselves, to split off, it's also the trauma that we might be feeling and experiencing, the trauma that we might be witnessing in our communities and in our neighborhoods. And all that, as a result of that level of oppression and racism that our society imposes on people. So marginalized communities are likely to have adapted in order to survive. So meaning that dissociative identity disorder and a lot of trauma disorders are adaptive coping mechanisms. So you're in a situation that you can't get out of. So racism is like that in the US. So you can't change the color of your skin, and you're treated differently because of it. You're treated like you're less than because of it. So people aren't able to escape it and so they adapt in order to survive it. And that is trauma that people are experiencing in our society and have been experiencing in our society. I'm not saying that oppression on its own will create enough trauma for people to split off and create DID, but you can see how in marginalized communities where there is trauma in childhood, that there is like trauma upon trauma. And so it is likely to be happening in marginalized communities. But when you look at the field, when you look at who gets care, when you look at-- there's a conference that I go to every year for people who have dissociative identity disorder. That conference is almost entirely white. The field of dealing with dissociative identity disorder is very white. But I think the impact is not just on white people. I think it is on marginalized communities, very heavily. And the problem is, is they're not likely to have had the luxury to have discovered the impact, to discover that what they have is this dissociative disorder, this very creative, adaptive coping mechanism. So they move through the world with the additional challenge of not knowing that the way that their brain is setup now is creating more challenges for them than it has to be. And that's why I mean I was in a position to have the luxury to discover the impact. And then and in large part, because I found myself trying to get as far away from what I grew up with, and what I thought was the problem about my upbringing was that we were poor. And so I tried to get as far away from that as possible by going to law school, by working at a big law firm, and making quite a bit money, and then going to the Department of Justice. So I had a certain level of privilege and resources at the time that I started having panic attacks. And it's only once I was in my 30s that where I was, I had the resources and the privilege to deal with this issue that I was able to discover that I had it. So that's what I mean about the luxury of discovering its impact. So this is the psychiatrist that I was really lucky to be able to work with. His name is Dr. Richard Chefetz. I started working with him in 1993 and we work together off and on from 1993 until, off and on until that was like in early 2000s, and then a little bit again in 2011-12 era. And then 2015, he wrote this book that is considered the bible on how do you treat DID. And part of the reason that it's the bible for that is because what Rich did when he worked with people is he made sure that in working with someone that he was building connections for them, so that they could leave therapy. A lot of people with DID never leave therapy. They work with clinicians their whole life. And Rich wanted to make sure that people had the support and the connections outside of therapy to be able to leave therapy and have a full life. So there is a lot that he did in this that was really significant. So I wrote a book that came out. It's called The Sum of My Parts. It came out in 2011. And I wrote about-- half the book was on how DID formed in me, so what happened to me that DID formed. And in the process of writing that, I also show you the things that people did that helped me. And then the second half of the book is about the healing process. So it's kind of my side of working with Rich and how that felt from an inside-out perspective. The thing that's really tricky about DID is that it's a very-- the people who are able to get diagnosed, the people who are treated are, for the most part, white. But we know that it's affecting communities of color. We're just not seeing them. And part of the reason is because our resources aren't developed for them. And so they're not finding themselves in the materials. So my book is a good example. My book was published in the US in English. But there are people in the US that don't speak English, that don't read well in English, that might prefer reading it in Spanish. But my publisher wouldn't publish it in Spanish in the US. So I took the book and I got my rights back too and paid for the book to be translated and published in Spanish. And the reason I did that is because I'm a Latina, and this happened to me, and I want other Latinas and Latinos out there to be able to find themselves in my experience. And if they can't read about what it feels like from someone who has it to have DID, they might never know that they have it. They might just struggle and feel like they're not smart enough or they don't work hard enough or all these things that were told about ourselves because we're different, they may never figure that out. And knowing that I have DID has changed my life. Going through a process of healing has changed my life. Like I can be proactive. I can be thoughtful. I know how to move through the world as if I am one. And a lot of that came from healing from DID. For whatever that might look like for people, knowing that this might be something that you're struggling with and going through some sort of healing process, can really help. The other problem about DID for people of color, for Black, Indigenous, and other people color is that the healing world is mainstream and white. And so, for example, I had some of the best care that someone can pay for in the US, really top-shelf amazing care. But I left therapy still struggling with speaking Spanish because all my abuse happened in Spanish and that wasn't something we dealt with in therapy, because my therapy was very mainstream, very white. I left therapy still struggling with being able to eat garlic because all the foods that we grew up eating started with-- every dinner started with olive oil, onions, and garlic. And that was the smell. The smell of garlic when I was abused. And so it was a trauma response. Whenever I would eat garlic, I would be triggered and I would have a reaction to I thought was the garlic, but instead it was the smell and taste of garlic that was a trigger and creating trauma for me. So that's not stuff that was dealt with in my therapy because my therapy is very mainstream and white. So for me, the impact of this on marginalized communities is that we have a very mainstream white approach to an issue that affects everyone. And I think disproportionately affects people of color. And we don't have a way of helping people to heal both culturally in this mental health way. And we don't have a way of helping people understand that they have this. So I fear that people who have DID that are Black, Indigenous, and other people of color, I fear that what's happening is that they're being arrested more because of behavior issues that might be coming up because of the DID. They might be homeless more, that they are really struggling. And so there is a lot you can do. And what I think is helpful is, one, to learn more about DID. There's lots of resources out there. You can find some on my website, which I have a personal website where I write about DID, which is olgatrujillo.com. You can find it, and I have a resource list at the end of this PowerPoint. But the McLean Hospital as part of Harvard Medical School, they're developing a website about DID and they treat people with DID. And Infinite Mind is another website that has information about DID. And there's lots of, there's materials out there that are really helpful. There are YouTube tours that have DID that do all kinds of videos about what it's like to live with. And then share what you know with colleagues and with friends and family and others so that people understand that it is real, that it does happen to people, that the reasons that it happens to people is because they experience unremitting trauma over a long period of time as a child, and this was their adaptive coping mechanism. And then help people with DID to be proactive, to kind of think through and problem solve and prioritize. So in the sharing with others, remember that this is an adaptive response to violence and trauma, and then to think about this, people who have DID, this is a superpower, this is an incredible coping mechanism that someone creatively put in place to be able to deal with the abuse and trauma that they were experiencing while still moving through the world. And then also, I think, our best approach with marginalized communities is a healing centered point. I think, actually, our best approach with anyone is a healing centered approach where you can-- where your cultural identity and your strengths are centered, and then the trauma is addressed. Instead of looking at people as a product of the worst things that have happened to them, you're looking and treating people from the perspective of who they are, how they identify, what their strengths are, and these things happen to them, and there's trauma in their experience. If you do it that way, you'll help people be more resilient, you'll help people heal in a more whole way. And so things-- and the problem with the field of psychology is that it is very mainstream and there are certain credentials that you have to have to do it. And then what it does is, I mean, I benefited from that and I think that's awesome. But what it does is it then devalues cultural healing practices which may be really what that person needs. Like not everyone needs to go through the healing process I went through, but when we say this is the way to heal, we devalue and discredit these other ways of healing like through acupuncture, through sweat lodges, through talking circles. There's all sorts of cultural ways of healing that are also really, really powerful for people. So help people with DID be proactive. Think through, prioritize what they need to do, talk through something that they're trying to do or accomplish, break it down into small steps, help them see themselves be able to do the different aspects of the steps. They might not be able to take in all the steps all at once, but if you do it a little bit at a time, you can do a couple steps and then come back and talk about it again, and then a couple more steps. It's a very, very powerful experience to realize that you can be proactive. Also, help people plan for a crisis and plan for re-traumatization. So anticipate what might become a problem for them. So for example, if you're working with a sexual assault survivor, it might be whether they participate in an investigation and prosecution of the case. Or whether they go back to school, or whether they leave their parents home, whether they might run into the person that caused the violence, and caused the trauma. So help them think through what they would do in those situations. Break it down, really small steps, and work with them on thinking it through because that's huge. Part of the trauma of being abused growing up is that you feel powerless. And even though you're an adult, you still feel powerless. So helping someone break through that is a huge thing. And what kinds of things could happen that could create a crisis for someone? So right now, really, getting COVID-19 could create a crisis for people being re-victimized, could create a crisis being trapped somewhere, could create a crisis for people. So think through things like that. Listen to what people say they're afraid of having happen, and take that really seriously. Because those things that they're afraid of or that they're worrying about, they're not saying this is a crisis and I'm afraid I'm going to be re-traumatized, but in all likelihood, that's what's going on. So take those things seriously. Walk them through that. Who do they want involved to help them? So help them think through how they might get help if something happens. Who should be called? And who shouldn't be called? So the big thing here is institutional responses are not usually very friendly to marginalized communities. So they're not always going to want to go there. I'm not going to want to call 9-1-1 if something happens to me out here in Wisconsin, one, because I live in the middle of nowhere Wisconsin, where they're not going to really know about DID. And so then some of the ways in which I might react if I'm re-traumatized or in a crisis may look problematic to the people around me who don't know about it. So think through with them how they want to handle it. The other thing is I've created a card that says I have DID, what it is, and then I have the name of my partner and her phone number, and the name of my psychiatrist and his phone number if someone needs to call someone because I'm injured or in crisis and unable to lay that out for them. That's been really helpful for other people around the country. And actually, there's a health care guide that I developed that's also here on the Resource Center's website that you can look for, and there's a sample card along with that. So when you're doing safety planning with someone who's experienced a lot of trauma and may have DID, repeat things as often as needed. Keep it simple. Talk about dissociation as part of the safety planning. Dissociation is when someone kind of goes away in their head, separates a little bit from their body. They might seem really withdrawn, they might seem like they're really gone, or they might just seem a little distant. But that can impact how quickly you process things. So talk about whether they notice when they dissociate, what happens when they dissociate, what kinds of things can they do to ground themselves. Learning how to ground yourself is a great thing for you to do and then for teaching someone who has DID to do for themselves. And on the Resource Center website, there is a little infographics that kind of walks through what you can do to ground yourself. You can print that out, give that to survivors as a reminder, keep it on your desk as a reminder for yourself. Be sure if you've never done this before to do it with other advocates or other folks that you're working with to make sure you're doing it right and not too fast, not too slow. Just get a sense of it, get comfortable with it. Talk about with someone who has DID, if they know they have DID. It's really helpful at times to talk about how we all need to work together. And what I'm saying is how we all need to work together, meaning, inside. That person's parts with them, how they might need to all work together. Don't talk to specific parts unless they're talking to you. Don't call out any parts. But just say, is it possible for you all to work together, and have a conversation with that person about how they might be able to do that. Be willing to do all this over and over and over again. There is this thing called neuroplasticity. And what it is, it's your brain's way of rewiring itself. And so if you do something the same way over and over and over again, eventually, that's the way you'll do it. If you're working with someone that has DID, and you're working with them on a regular basis, one of the best things you can do is create a team. And then over time, you're going to work better together, faster, and longer, because that'll be the way they do it. The things that they do with you is through that same routine. If you have a shelter, accessing shelters can be really hard for people with DID. So some of the most challenging things is sharing a room with someone you don't know, not being able to lock the door. People with DID oftentimes can't sleep at night when they've been re-traumatized or in a crisis. People will withdraw and that usually means that they are overwhelmed, traumatized, not feeling trusting. So pay attention to that and reach out. And reach out kindly and gently to help them feel like you're there for them, and try to be very transparent so that you can build trust with them. Recognize that there is a lot going on in someone's head when they have DID. Remember, I had, when I stopped counting, I had about 120 parts. And the way that felt to me wasn't so much voices but there were a lot, a lot of thoughts going on in my head all the time. And I learned to stop paying attention to them. And then in the healing process, I started paying attention again. That constant energy, that constant thoughts, or for a lot of people, it's constant voices, it's exhausting. One, it makes it really hard to focus. So remember that when you're working with someone with DID, if they might respond slowly, they might look like they're having trouble processing information, so give them things in different modes of learning. So if you can have drawings of things, if you can walk people through things, and give them things in writing. But don't just rely on things in writing. It'll be hard for people to comprehend that all the time. It also feels a lot of times like you have white noise going on in your head. So think about like how hard it might be for you to work when there is a lot going on around you to be able to concentrate. And that's, in a nutshell, a little bit what it's like when you have DID. Again, grounding techniques are really important, really helpful for people so you can help people do these things and then give them the little graphic and let them practice doing it for themselves. The way that I've learned to move through the world as though I am one is the guidance that I'm going to give you for helping other people do it. So one, plan ahead. Think through what this person might need to do in order to get through your program or what it is that you're working with them on. Make things as predictable as possible. So prepare, let them know what to expect, and break it down in small chunks. And be like really, really specific about what they might expect. Don't do it in wide swaths because people like me are super, super observant. We're hyper vigilant, so we're constantly taking in information. So letting us know which door of a courtroom or which door of a courthouse to walk into, which elevator to take, how many people we might expect to be in that lobby, how many people, like elevator is going to be crowded, what floor am I going to get off on, where is the room that I need to go to, all those pieces are really important. The more that I know what to expect, the less anxious I am. The less anxious I am, the less likely I am to panic and not do what I'm working towards doing. The other thing is when you're working with someone, try to limit stimulation as much as you can. So that thing that we do about hyper vigilance, we're constantly, constantly taking in our surroundings and assessing for safety. And any additional stimulation on top of that makes it harder for us to do that. It's exhausting, it slows down our processing. So if you're working with someone who's experienced trauma, and in particular if you're working with someone who has DID, try to meet in a quiet place, in an open area that's not too closed off, but with privacy. And I hope that that's possible. If not, try to then go to a quiet place outside. And a lot of things are happening right now via Zoom, and that might actually be good in terms of limiting stimulation. The other thing that I'll just mention, though, is a lot of people with DID don't feel comfortable in front of cameras. So might not want to do a video conference with you, might struggle with that. Because a lot of abuse that happens also involves filming and taking pictures of people. So just be alert to that. You can try to do things on the phone. Or what I do with other people that have DID is I'll still do a Zoom session where I don't see them, but they see me. Because it's usually the filming of them that's an issue, and if they have control over not being filmed, meaning not being on camera, then they're usually a little more comfortable with it. Again, using things and different modes of communication is really important so that they can retain the information that you're presenting them with, that you're giving them. And then talk about trauma-related issues and how you'll handle them when they come up. So what happens when they get triggered? Do they know? Do they know what triggers them? Do they know- - if they don't know things about getting triggered, do they know what's hard for them? And then how is that hard for them? Do they have panic attacks? Do they have times when they can't leave their house or their car or whatever way that they're coming in? Talk through all of that. And this all takes time so try to plan for that time. So I want to talk a little bit about legal proceedings because a lot of our work with crime victims involves legal proceedings. So once again, marginalized communities don't tend to do well in legal proceedings. Meaning, the way that our systems are set up are inherently racist. And so the process of participating in these proceedings become even more stressful. We are constantly reminded of how we are different. So for example, I'm at the intersection of being a Latina, having a really significant mental health disorder, DID, being queer, being gender nonconforming. I live at those intersections. So being in a system response will be more stressful for me because I will be feeling what I have felt my whole life, which is being judged for being different. Those are things that are really important to keep in mind. And the fact that someone also has DID will make things hard for them. So legal proceedings are inherently triggering. Expect triggers, plan for triggers. Explore if there is a way that some of these can happen where they're not in the same place as the person that caused them harm. Explore if it's possible for them to do video testimony. And again, be mindful that some people will not be able to be videoed. Prepare early for legal proceedings. I've had lots and lots of victim advocates talk to me about how they were forced to go pick up a sexual assault survivor because she was having a panic attack and couldn't get to court. And how painful it was for them to try to make them go to court. Prepare ahead of time, practice, meet them at the court a few times ahead of time. And if it's not a court proceeding, let's say it's a health care facility, health care is still really hard for people with DID, it can be really triggering. So prepare ahead of time, meet them there, walk through what the procedure or the visit will be like. Again, making it as predictable as possible. And there is a number of resource centers or resources on the Resource Center website that I think you're going to be really helpful. There are ones that I was involved in writing, and I'm always writing about DID even when I'm not saying I'm writing about DID. So the tips there in these tip sheets for victim advocates, for lawyers, for courts, and the tip sheet on health care, those are all going to work for people with DID. Because I have figured out how to move through the world with DID. And that's what I write about whether I say I write about it or not. So again, plan for triggers. If people have supportive family, their friends in their life, encourage them to include them in whatever it is that you're working with them on. Consider whether support animal is possible for what you're working with the person with DID on. It's a really grounding experience to have a support animal. I know that a lot of courtrooms have them, a lot of domestic violence programs have them, sexual assault programs. And now, even some therapists have them. They're really grounding. And again, I keep saying this, but it's because it's really important, to learn grounding techniques and teach people how to use them for themselves when they're having a tough time. All right, so learn more about DID and other trauma-related conditions. Listen, believe when people tell you that they have DID. And try to find people in your area that work with trauma and association in case they need a referral. So these are some of the resources where you can find more information on DID. At my website, you can reach me and I have a ton of information on DID. This is my passion. I feel really lucky to have been able to find the care that I got, be able to afford it, and to be able to figure out how to move through the world as one. So I want to help you help other people do the same. And remember, if you think about DID as a superpower, you're going to deal with people in a really great way because it really is a superpower. I mean, it is amazing what people like me have been able to do to survive the things that we've been subjected to. And in particular, people from marginalized communities. So remember it's a superpower. You are centering their cultural identity. You are centering their strengths and you're applying trauma-informed practices to it. If you do all that, you're going to do awesome with people who have DID. OK, here's my contact information. I have both my email at Caminar Latino and my personal email at olgatrujillo.com. And that's because I really want you, if you have questions about DID, to get in touch with me. It's a really important issue to me and I think if you need something, I'm going to try to get you in touch with somebody who has it or I'm going to get it for you. Thanks very much.