Podcast Transcript

Episode 71: Living with Dissociative Identity Disorder: Shattering Stigmas with Monika Ostroff, LICSW, CEDS-S

[Bouncy theme music plays.]

Sam: Hey, I’m Sam.

Ashley: Hi, I’m Ashley, and you’re listening to All Bodies. All Foods. presented by The Renfrew Center for Eating Disorders. We want to create a space for all bodies to come together authentically and purposefully to discuss various areas that impact us on a cultural and relational level.

Sam: We believe that all bodies and all foods are welcome. We would love for you to join us on this journey. Let’s learn together.

Imagine discovering evidence of things you’ve done, conversations you’ve had, decisions you’ve made, maybe even entire days that have passed, yet having no memory of them at all. Imagine your very sense of self feeling disjointed, fragmented, like chapters from different books, but all bound together with the same cover. For individuals living with dissociative identity disorder or DID, these experiences can be deeply unsettling, scary and confusing, and they’re often a part of everyday life. Previously known as multiple personality disorder, DID is a complex and often misunderstood condition marked by disruptions in memory, identity and consciousness. It’s also one of the most stigmatized and sensationalized disorders in the DSM. It’s frequently misrepresented, misdiagnosed, and rarely discussed with nuance. It can also quietly travel alongside an eating disorder without ever being detected, making treatment and recovery significantly more complicated. In this powerful episode, we sit down with Monika Ostroff, a deeply respected voice in the field of eating disorders and someone with lived experience navigating both severe and enduring anorexia nervosa and dissociative identity disorder. Monica is a licensed independent clinical social worker and a certified eating disorder specialist and supervisor. She’s the Executive Director of the Multiservice Eating Disorders Association, also known as META. Prior to leading MEDA, she directed several residential, partial hospital and intensive outpatient eating disorder programs in addition to having owned a thriving private practice. Monika is the co-author of Anorexia Nervosa, a Guide to Recovery, and a contributing author to self-harm behavior and eating disorders. With more than 25 years of experience in the field of eating disorders, Monika has presented at many national conferences, taught at the university level, and appeared on many media broadcasts, publications, and podcasts. Practicing from a trauma-informed, social justice, and staunchly health-at-every-size aligned lens, Monika is a dedicated ally and strong advocate working to ensure access to equitable, compassionate, and affirming care for all. In our conversation, Monika brings us inside the everyday moments often ordinary, sometimes jarring, that paint a vivid and humanizing portrait of life with Dissociative Identity Disorder. She shares not only her story, but essential guidance for clinicians on proper assessment and care, insights on supporting loved ones, and candid truths about the intersection of DID and eating disorders. She also takes on the myths that dominate mainstream narratives, offering instead a perspective grounded in compassion, clarity, and lived truth. Whether you’re a provider, a survivor, or someone seeking a deeper understanding of DID, this episode is a must-listen.  Let’s dive in together.

Hi, everyone. Welcome back to All Bodies, All Foods. I’m your host, Sam. I’m here with Ashley, and we have a really special show today. We have Monika Ostroff back on the show, and we’re so happy and we’re so grateful to have you with us.

Monika: Thank you for having me. It’s great to be back.

Sam: We have an amazing topic today. We’re talking about Dissociative Identity Disorder, and we’re talking about eating disorders and the two co-occurring. And Monika, you are really passionate about the intersection of these disorders. I was hoping you can tell our audience a little more about why you’re so passionate.

Monika: I can. So people, you know, after hearing my bio, they’ll figure out that I’m a fossil in the field at this point. Like the bio just keeps getting longer, right? So you’re always writing it to try to make it as condensed as you can. And I think a lot of people know that prior to my working in this field as a therapist, manager, director, fill in the blank, this is what happens when you get old. You have like a lot of different hats and roles you wear, right?

Sam: Yeah. 

Monika: That I was somebody struggling with a long-term eating disorder, which I think I mentioned in my bio as well. But I think something that a lot of people probably don’t necessarily know about me, more people know it now than previously, but in 1993, I was diagnosed with what was then called multiple personality disorder, which is what is now called Dissociative Identity Disorder. It’s a condition I still live with, and it is, and by my estimation, I think it’s one of the most stigmatized disorders in the DSM. You know, it has been, it continues to be. And I think the fact that some people don’t even believe that DID is real or exists is completely mind boggling to me. It’s a disorder that has a global prevalence of 1 to 1.5 % and up to 3%, which is, in some studies it’s 3%. That’s as common as red hair. And that’s just DID. So there’s also like OSDD, right? OSDD-1, which is really similar to DID, it’s missing a criteria. Global prevalence of that is 4.2%, which is basically the equivalent of people with anxiety disorders, according to the WHO.  So, you know.

Ashley: What is OSDD again?

Monika: Other Specified Dissociative Disorder.

Ashley: OK.

Monika: So there’s four of them, but OSDD one is split up into one A and one B, which is very similar to DID.  And realistically, you know, I think I started speaking out about it mostly as a way of trying to break some of the stigma and stereotypes around it, because people who have DID are losing their jobs, they’re losing friends, they lose many things that they hold dear. And when you think about what you’ve endured to end up with this diagnosis, it’s particularly sad to me that you’re losing all of these things, that you’re suffering more losses due to the impact of the trauma. Like that seems particularly cruel to me. And I feel like, you know, for those of us that are in positions of relative safety, it’s important to start talking out as a way of combating that stigma. You know, that it’s not the fantastical disorder, you know, that I think is portrayed in media. It’s people like me and stockers, lawyers, teachers, people from.. who hold any job, know, mechanics, pilots, lots of people have DID and there are also people who are profoundly disabled by it.

Ashley: Monika, I’m curious, would you be able,  based on what you’re saying, I’m curious, first of all, if it’s under reported,  it clearly is, I would assume, misdiagnosed, especially if there are folks that  don’t even kind of adhere to the belief that DID exists. Would you be willing to define it for us? What is it? How do we know it? What are the signs and symptoms, et cetera?

Monika: Yes, there’s the, you know, there’s sort of like the clinical diagnosis. And then I usually will give an analogy because I feel like it’s easier for people to understand within analogy. So for like the benefit of folks who might be clinical that are listening, you know, DID is basically the presence of two or more distinct identities or personality states, and it’s evidenced by disruptions in memory, behavior, a sense of self, and it impairs your functioning.  OSDD is very similar. It just doesn’t meet the same criteria. OSDD1B is parts are present that are distinct, but they don’t have full amnesia. They have more co-consciousness. And then OSDD1A, you have less differentiated parts, but you have amnesia. So the key differences, is DID is amnesia plus distinct identities and the amnesia can be historical or daily, and it’s not always obvious. Like you can actually have amnesia for amnesia, another whole topic. OSDD, you know, more gray outs, passive influence. And then the analogy that I like to use for folks is because I feel like we’re all familiar with parts, right? Thanks to IFS. IFS is so popular.

Sam: Yeah, we actually had a whole episode on that.

Monika: Perfect.

Sam: Yeah, actually. So if you’re listening and curious, go back and learn about parts and then come back to us.

Monika: Yes, and then come back here.

Sam: And then come back here.

Monika: It’s a little different. So for people who don’t have DID, you can think about your parts as like maybe sitting at a long executive table, like board table in the parts can see each other.  They know about each other. You can name them like, oh, I have a work part. I have a parent part. And you can even have parts talking to each other or you as the self with a capital S can talk to your parts, right? Try to get information from them in the course of a therapy session or just by yourself. And it’s not that difficult to do that, right? It’s relatively simple versus DID, which is not a table. DID is like a hallway full of rooms and all the doors are shut. And parts are behind the closed doors and each part has its own experience and has generally its own role. So when it’s time for a part to manage a particular situation or role in life, it will open the door, come out, do what it needs to do, and then it goes back in and it may or may not leave some information for other parts in the hallway. And when its job is done, it goes back into the room, so it might take all of its information with it or it might leave some. And then another part will come out to do  what it is designed to do. Maybe that’s going to school. But it doesn’t know about the other part that was just out maybe managing the morning routine or dealing with your parents or whatever it might be.  And this part might have gotten in trouble for something that it didn’t do and doesn’t remember. So it will make excuses or cover. So parts are really good at masking to look like one person. That’s a covert disorder, right? DID is designed to be covert. Only 6 % of systems are overt and obvious. 94 % are covert. And there are some covert systems do have overt parts that will be out maybe at home or when they’re by themselves, but not necessarily in public. So that’s sort of the definition and the concept. So you know, ultimately, what we’re eventually trying to do is get all the doors open so that all the parts know each other exists. And maybe you can come out and have a conversation in a living room somewhere and get some cooperation and collaboration.

Sam: That is so helpful. That analogy. Thank you for breaking it down that way, because I think we can all relate to the experience of having parts. You know, we have this part that shows up for work, we have like a professional sort of identity. We have, you know, there’s a part that talks to our pets that’s totally different that would never show up at work, hopefully not, you know, you don’t want to talk to your boss the way you talk to your dog.  But wow, what a such a helpful visual of the parts being behind closed doors. And they’re not necessarily talking to each other.  They might, you said they might leave some clues in the hallway, but there’s really not this awareness what the parts are doing the way maybe someone without DID, there is full awareness of  what our parts are doing, even though they can be very, very different.

Monika: Yes. So as you can imagine, right, when parts don’t know what other parts are doing, you live with a lot of confusion. But  from an outside perspective, so from the external, like some clues if you happen to be a provider and you’re listening, what are some things that you can look for to identify that maybe your client has DID given that 40 % of people with DID have an eating disorder, right? It’s, we, they’re in our practices. Yeah, they’re in our practices. So it’s, and it’s not, if we’re always looking for somebody to show up, you know, dressed like a five-year-old, that’s probably not going to happen. So the clues are things like your client or the person, if you are somebody who suspects you might have it, has been on  kind of endless trials of medication and it’s been unsuccessful. So many different types and dosages and different trials and they just don’t work.  Multiple different treatments over time, and they’re not successful either. People may have had multiple hospital stays, CBT, ECTs, ketamine, et cetera, et cetera, and kind of nothing works. Over time, the person has collected a laundry list of diagnoses.  So, you know, the most common bipolar disorder, borderline personality disorder, schizophrenia, OCD, major depressive disorder, substance abuse, eating disorders, those are all really common.  The treatment team tends to have a feeling of its own confusion around the diagnosis and around treatment planning, kind of like, “I don’t really know exactly what’s going on here, because I was positive it was bipolar disorder, but now I’m not so sure. This is looking like something different.” You’ll find inconsistent reporting that is also an inconsistent presentation.  Somebody who is doing really well at work or school and they’re regressing in therapy.  People who have a lot of somatic symptoms and very typically will get an unusually high pain tolerance and  narcoleptic symptoms, which is often indicative of switching. Eye scanning, lots of rapid blinking. You’ll hear stories, but the unusual pain tolerance, I always want to pause for just a moment, you know, just to relay an experience that  I’ve had. I mean, I have an unusually high pain tolerance, which was, you know, great when I was giving birth, but you’ll have things happen sometimes. And this is the place where I think some of the younger clients can get labeled in some unflattering ways. Like I had gone skiing for the day last year, had a great day skiing and it was about 7:30, eight o’clock at night.  All of a sudden, like my little finger started feeling kind of weird and I looked at it and it was all swollen and purple. Well it didn’t just happen from sitting on the couch, right? I knew that I had, I had actually fallen. I don’t typically, but I, there’s nothing about that, that I recalled my finger bothering me. And plus that was earlier in the day and it was at seven. It’s always really fun to go get an injury checked out and the doctor’s like, what did you do? And you’re like, I have no idea, but you really don’t know. Like you just, I didn’t feel it if it happened. So that kind of thing if you have clients who are like, “oh yeah, this happened. I don’t know what I did. I have this huge bruise. I don’t know what I did.” It’s really, it’s common.

Sam:  Yeah. I’m learning a lot already. We’re only like, we’re less than 20 minutes in and I’m learning so  much. I mean, I, I’m curious about this high, this high pain tolerance. What do you think that’s about? Is there research on that?  Why? Why? Is it because another alter experiences the pain? And then there’s amnesia or I’m just curious, do we know why?

Monika: I don’t know that we have the answer for that specifically. I mean, as you can imagine, research is not well funded in mental health in general, nevermind for DID. I mean, they just started doing functional MRIs that can show differences in brain activity between alters, right? Like that’s new-ish. I think the brain is a really interesting thing.  Is it just high analgesia that helps you survive the abuse from when you were younger?  Or is it an altar that, because it’s not like you never feel pain. You can get headaches and things like that, but it’s just interesting how it works. It could very well be that pain that happens suddenly or unexpectedly is managed by an alter or it could be just an alteration in brain chemistry as a result of trauma. 

Sam: Right. That actually makes sense. And then you had mentioned narcolepsy as well?

Monika: Yeah, it’s  a lot of times when you are, when you have parts that are moving towards the front. So like for folks who are not familiar with DID terminology for a part that has executive control of the body, we call it fronting, like what part is fronting?  And then you can have two parts fronting that would be like co-fronting and that would mean those two parts are also co-conscious, meaning aware of what’s happening in the moment. 

Sam: Oh, so that would be like two parts coming out of their rooms to be present together.

Monika:  And do something together.

Sam: And do something together. Okay.

Monika:  And it can get really, I can give you a personal experience of co-fronting that is annoying, helpful, but annoying. That it might be helpful. I think it’s really common and it can be helpful for people to be able to explain it to their clients that they have clients with DID.  So you know when you get a new doctor’s appointment, you have to go into the patient portal and fill out your history. 

Sam and Ashley: Yes.

Monika: So I had a dermatology appointment last year.  I kept thinking like, God, I like I need to get that portal information done before I go. And it was one of those things that you just keep thinking you have to do and you just never have time to do it. And then you, so I’m like, I’ll go early and I’ll just do it when I get there. So I show up, you know, my 15 minutes early, but couldn’t ever actually get an iPad to do it. And so I’m like, well, it is what it is. I go in for the appointment and I immediately apologize. “I’m so sorry. I know you guys sent me the link and I didn’t have a chance to do it.” And then they said, “Oh, well, I mean, it looks like it’s done.” And it was like one eyebrow goes up and it’s like, what’s she talking about? So then I thought, maybe they just share Epic, you know, it’s a popular EMR system. And if you’re in a network, except they don’t, and they’re not in anybody’s network that I, that I actually see. So that was a little freaky. And I’m like, yeah, I don’t know. Maybe they got like my drug allergies from a pharmacy or something. I just sort of wrote it off. And I figured I’ll go in and fill it out. Long story short, Reader’s Digest version, I got home, the whole thing was filled out. And I was completely freaked out about it. I freak out about amnesia all the time.  Mostly because I have a part that thinks my brain is rotting, but that’s another issue. Over time, what’s really interesting is you can ask for parts to give you information. Eventually, over the course of a week, started, it was almost like it was underwater. I could kind of see it all and had the finally like this very blurry recollection of filling it out before dinner one night in a hurry and figured out what part it was. And so this is a visual. So for folks that are listening, I’m putting my hands together, signifying each hand as a part, right? So there were two parts. I was present while this part was doing the paperwork. So I knew about it. It’s just that when it was time for the part that was doing a paperwork to go do something else or time for me to go doing something else, when this part left, it took the information with it,  which is not uncommon.  But I was there.  It just wasn’t important for me to know that. So like I didn’t, I couldn’t recall it for a week. And I think that happens a lot to people. And when you are dealing with folks who have eating disorders, it’s really easy to say your memory is crappy because you’re malnourished regardless of body shape and size, right? If you’re not eating correctly, your memory is just kind of crappy. And that will get better when you nourish yourself, unless you have DID or OSDD. That’s a pretty common experience.  And that’s what you would call a gray out. It’s not a full blackout.

Sam: A gray out. Yeah, I was actually going to ask about that. I remember you said that earlier in the episode. A gray out is maybe like partial amnesia.

Monika: Yeah. So like you’re present for something, you know what happens. You can’t really recall the details at all. And sometimes if you’re lucky, it will kind of float back or you can get another, you can ask things that I’d be like, “Hey, whoever can you like, what happened? Who was there and what happened” to like telling me and you can get information. Sometimes different systems communicate different ways. Sometimes you can communicate in your headspace and other times people need communication logs like journals where you can write back and forth.

Sam: Yes, I imagine that would be really helpful. Monika, I’m just so grateful for your vulnerability. I mean, this is amazing.  And it’s, we’re just, I don’t know, I just feel so lucky to have you on the show because you are breaking down the stigma and it’s amazing.

Monika: I think it’s really important for people to… I’m really lucky, right? I had this conversation with another provider actually at our conference recently, and they were like, “so do you think you could have done this a couple of years ago?” And I said, “from a professional position, probably from a place of personal comfort with it, no.”  You know, but..because to some degree, are things that happen and honestly, it feels humiliating. It feels embarrassing. It feels mortifying. I can share some of that. It’s not a big deal stuff, but it’s like it is. It feels humiliating and embarrassing. But I am in a place in my career where you can come up to me after listening to the conversation that the three of us are having today, right? And somebody could come up and say, I think you are a bad shit crazy, Monika, and you shouldn’t be working. And you can have that opinion, but what I’m going to point out to people who might have that opinion hearing this is when you didn’t know that I had that diagnosis, you had nothing but good things to say about the last 25 years of work that I’ve done in this field. I’ve opened programs. I’ve successfully treated lots and lots of people. I’ve successfully trained lots and lots of therapists who are doing excellent work. This diagnosis doesn’t impede that ability. The fact that I can’t remember an instance because another part of me did a portal with my dermatologist, has nothing to do with the parts of myself that manage work. They’re just compartmentalized. I, you know, some of the parts behind those doors and many of the doors are open, but not all of them, function really well and do really good work. And you learn ways of compensating, right? So you do you learn to do things like check your sent folder before you check your inbox.

Ashley: Yes.

Sam: Right.

Monika: You may check your journal. You know, if you I meant to pull one over here just so you guys can see, like, it’s full of different handwriting. So you can see there are different parts that are writing just based on the different handwriting that are in there. As crazy as somebody might think that is, it doesn’t impede lots of things about me. It doesn’t change my passion for raising my daughter. It doesn’t change my love for animals. It doesn’t change my love for nature. It doesn’t change my compassion for all of you. And I would truly encourage anyone who decides to call it crazy to reframe that as creative brilliance.  Because I am somebody who suffered daily prolonged severe abuse before the age of two, all the way until I was 30, just under 37 years old.  I have, you know, nobody needs to know the details of that, but it’s just about every kind of abuse you can imagine, right?  And I can function. To me, like,  I can be mortified and embarrassed about some things that happen in my system, right? But I think I’m pretty lucky that my brain figured out how to do that. And it’s different. You know, I think we’re at this place today where like we need to talk about and make space for the validity of differences in people’s life experience, and how those life experiences are coped with. I feel like I’m on a soapbox.

Ashley: I’m loving it. I like I’ve been quiet the whole time because I just, I’m taking it in. It’s so, your words are so beautiful and impactful. And I like as a clinician myself have clients who have DID as a diagnosis who also have an eating disorder. And I’m just sitting here listening like you’re speaking in a way that I’ve never understood this material before and it is so helpful and impactful. And I swear I want everybody, not even just eating disorder clinicians to listen to this, you know, like  I would say I didn’t even realize that  amnesia was like,  I guess in my understanding, I thought we could  go in and like open the doors or the self could go in and open the door and ask the other one to come out. You know, I didn’t realize that amnesia was a part of that, that the self that’s presenting or fronting, I think you said, may have no idea that another part came out of the door and took the information back.

Monika: I think one of the things that people also don’t realize, if you have lost time, you don’t actually know what’s missing. So people will often portray DID as like, all of a sudden, somebody wakes up and they’ve been gone for like a week or a month. And yes, that can happen, but that is not the most common presentation of how amnesia works. It’s, you know, like on a given day sometimes it’s, you know, and part of me is like, yeah, I don’t know, you should probably talk to my own therapist. She can probably tell you some really amusing stories about, you know,  so what did you do at 11 o’clock? I don’t know.  But now I make myself sound really silly, but it’s different. I feel like the clinical definitions that we read in textbooks and the DSM, they make sense, but it doesn’t  feel the way that it’s experienced. And I don’t think that it’s that easy for people to really conceptualize it. I like things that are a little more user friendly that can give people an idea of what it might be like if you’re not me.

Sam: Right. No, the DSM certainly doesn’t capture the lived experience. And it’s when you tell stories about your actual life, it helps me. And I think it helps our listeners understand what it’s like, and it actually brings me to my next question. You know, there’s so many myths and misconceptions out there about DID with the media and movies. And I was just hoping maybe you could like walk us through what a typical day is like and how that differs. You’re laughing. You know, how it differs from the myths and misconceptions out there.

Monika: So I am laughing because A-it’s different for every system. And there’s, you know, one of the reasons that I do my own podcast, is to have as many voices out there as possible so that hopefully people can see their own experience reflected and be able to get the care that they need and deserve. But, you know, for a lot of people, you know, from the perspective of somebody looking at  me, if you followed me around all day, you might say something like she’s good and consistent. She’s kind of spacey sometimes a little ditsy. She’s sort of moody and like unpredictable at times. If you spend every second with me, you might have that perception. From my perspective as somebody living with it, it’s confusing. There are times where you feel really blurry because parts can also blend and, you know they, I feel like media makes it sound like when, you know, if I were to switch into my five year old part, that means that I would have to run downstairs and find some rainbow colored tutu and a stuffed animal and then show up that way. I’ve got some like moody. I do have a moody 13 year old part that I would have to somehow like go downstairs and throw on a black hoodie and black eyeliner and like lots of jewelry and I don’t know. I’ll go get my nose pierced or whatever. It doesn’t happen that way. I mean, absolutely. Like I do have parts that have certain preferences around how they dress on a day that I that I know is going to not be a good day for me in terms of like how fluid that day is going to feel is when I notice that I’m wearing clothes that belong to sort of the preferences of different parts. That means I’m pretty blended, which then means you can get a lot of different opinions and feelings and thoughts about the same thing that you would normally be more clear on if you just had one part taking care of it. It also means that, do you guys know what passive influence is?

Sam: No.

Monika: Passive influence is really common in people who have OSDD, but people with DID have it also. So basically, passive influence is an influence that’s exerted by an alter that is not going to be fronting, that won’t have necessarily executive control of the body, but it will create an influence that ends up being irresistible, so you kind of end up doing whatever it is. So it’s this concept of like  going into, I’m laughing because I literally made a video for a friend about this because it’s actually happened. I was Christmas shopping a few years ago for my mom and her partner and I walked into the paper store because they have cool stuff and I get back to my car and I have a rainbow colored sherbert unicorn stuffy in the back.

Sam: Really?

Monika: There is. There’s definitely part that was complete passive influence to be like. Have it be irresistible to go to the toy section to get like, and that’s such a classic DID thing, you know, for a little part that would want something like that. My mother did get a nice gift. She didn’t end up with the unicorn. It definitely doesn’t feel passive when it’s happening, but you’re like, this is nuts. If you don’t do it, you are never going to rest. The part won’t let you rest. So you’ll hear stories of people who are like, I went to, I don’t know, Walmart to get bath towels. And I came back with stuff to make sand castles with. Like there’s also, or like cookies. There’s all sorts of things that can happen. You will…The most challenging experience is having a conversation or something that could potentially have some frustration involved, and all of a sudden there’s like words coming out of your mouth that you would not necessarily say. It’s another part that might be angry or frustrated that takes over. And, you know, the more communication you have internally, the less that happens. But, you know, for people who haven’t had a lot of treatment yet, that’s really common. And it feels really mortifying. On the flip side, you can also have things coming out of your mouth. You’re like, Oh my God, that’s amazing. How did we know that? That’s like brilliant. Like who knew that? Like you can be impressed by some of this stuff, you know?

Sam: Right, right.

Monika:  You know, you’ll also find people reminiscing about stuff that you suppose you did and you’re, I mean, thought everybody’s memory sucked for the longest time.  I would be as like, Wow, like that was I didn’t do that. Spoiler alert. Yeah, you did a lot of these things. Maybe not everything. But that’s just amnesia. Or, you know, you think people are gaslighting you because you ask a question and they’re like, we already talked about that. No, we didn’t. You must have me confused with somebody else.  Yeah, she did. You had me confused with another part of myself. But it’s confusing, right? Because you don’t have the information, then you have somebody telling you that you already talked about it, but you don’t have the information. It’s just really challenging. Or if you get triggered by something, you know, all of a sudden you can’t give people your demographic information, and like you’re obviously an adult in an adult body, but that means you’ve got some littler parts that are really close to the front. They don’t have to be fully fronting, but they can be really close to get to a place where, you know, you can recall your childhood phone number, but not your current one.  You know, those are, those are a few examples of what it can be. You can like gain and lose skills. There was a time that since we talked about skiing earlier, that I had been relatively triggered about something in a conversation with somebody late, late the night before. And I was in the middle of a ski trip and been skiing great, love skiing. So I  go up the lift and I start down a regular blue trail that I ski all the time, and I could not have been more of a terrible skier.  And that was because there was like my skiing skill was not there. So it occurred to me as I was like, you know, thankfully, a quarter to a third of the way down the slope, worrying that I was about to kill myself accidentally in a skiing accident, right? That there was a younger part that didn’t know how to ski well that was too close to the front and or, you know, was definitely superimposed in some way. So I literally was like internally going, can whoever knows how to ski well show up?

Sam: Right. Please come forward. Yes. 

Monika: Whoever can ski and whoever’s upset that can’t ski can go inside. And, you know, I have…There’s a whole skill set that you can do with an inner world that helps hearts cope with things that are difficult. So you can send them in the inner world to do things that are fun and soothing and have caretaker parts be with them to take care of that situation. But, you know, when you don’t know that that’s what’s going on with you before you get a diet, imagine living through all of that, not knowing that you have different parts and it’s like chaos and how do you describe that to somebody who, how do you just? It’s not something that you go into therapy and have all conceptualized to be able to say, these are all the things that are happening that don’t make sense. You are so confused that you’re presenting a lot of times as confused in therapy as well. So it takes forever to get this threaded out.

Sam: That makes a lot of sense. And you’re really helping me, Monika. You’re helping me empathize with this experience every day of not only feeling so confused, but at times really afraid.  And I’m just, my heart just like breaks knowing that there are so many people out there not only trying to recover from an eating disorder, but maybe DID that’s not even diagnosed.  There’s so much overlap with, you know, other mental health disorders or even malnutrition, you know, it’s sort of like how you had said earlier, the memory lapses could be blamed on malnourishment.  And that’s a really valid thing, obviously, but it could also be DID, and trying to navigate this world, not knowing even what’s going on. It’s just.

Monika: Well, you think everybody is like that, right? If you’re somebody who hears internal voices and you know anything about psychology, you’re not going to tell anybody. Because people who have, like Jamie Pollack is somebody who runs an infinite mind. know, one of her first diagnoses was schizophrenia because she talked about hearing internal voices.  She’s not schizophrenic. And there’s so many things that get misunderstood because we go to the things that we’re trained about in school. Right? So difficulty with memory? You have an eating disorder? You must be malnourished.  Difficulty thinking or making decisions? You’re probably anxious, stressed out, not sleeping well, may also be related to your nutritional status. You’re saying things impulsively? You know, maybe you have bipolar disorder, borderline personality disorder. Not sleeping? Maybe you’re bipolar.

Sam: Or ADHD.

Monika: This is how people get misdiagnosed!

Sam: Sure, sure. Oh my gosh. It’s there’s so much overlap. So it’s so tricky.

Monika: The thing that’s been really difficult to see and interesting at the same time is that there are a large number of people that end up in the severe and enduring eating disorder category that have untreated DID. What is particularly frustrating to me is when I was digging into literature, I found journal articles dating back to 1993 that said if you have somebody who has an eating disorder and they’re not responding to standard eating disorder treatments, screen them for DID at the time, MPD. And many of those people met the criteria, they got treated for MPD and their eating disorder also started improving.  In the past year, I’ve done consults and have heard from at least eight different people who have been able to identify either OSDD or DID in clients who have had eating disorders for 15 plus years.

Ashley: Wow. Wow.  I’m just imagining how even for you, Monika, the diagnosis maybe felt relieving a little bit. But so you mentioned you got diagnosed and well, yes, and 93. But as the years have gone on, has it helped you understand yourself and your space and time within the world better? Does it feel like any sort of relief that you can sit here and talk about us, talk about this with us, share this with us, and say that this is an actual, like this is a thing.

Monika: So it’s a complicated answer, I think. I think it’s important that I’m sitting here talking with you to say this is a thing, especially given the number of people who are suffering for decades with an eating disorder and other mental health conditions because they’re not diagnosed. My personal journey has been kind of awful because I was diagnosed in 93. My 20s were a nightmare, between my eating disorder and mental health concerns and the inability to get care for DID because everyone was getting sued because of the False Memory Syndrome Foundation. And then I had more trauma at which the trauma actually made my system go back to functioning the way that it was designed. And this will sound crazy, but I kind of forgot about it. People would suggest it and I’d be like, now you’re crazy.  So it wasn’t something that for me got dealt with. Today? Sure. Like, you know today when things are not great internally, having the explanation of, I know why this is happening is helpful. It gives me an avenue to, you know, to move down, to work on, to make things work better internally. It’s also kind of annoying. You know, like, can I just have COVID without a little part thinking we’re dying? Like, that’s kind of annoying. But you know, it is what it is. I think, you know, people, we have this perception of, of, like mental illness, mental conditions, I guess struggle sometimes too, with the disorder aspect of it, it’s different than the norm. But it doesn’t always really impact, I’m still, I think some of my functioning personally is probably impacted, but there are plenty of people who live with functional multiplicity and their functioning is not impacted, but they still have distinct parts. You know, is that really a disorder? I don’t know that it is.  Is it different than the norm? Sure, but we have a lot of things today that are different from the norm.

Sam: Monika, the intersection of DID and eating disorders, what are some of the challenges for someone like yourself who had to navigate both? What do we need to know?

Monika: I think it’s a really great topic, actually, given  how prevalent it is, right, in the eating disorder population. The biggest thing is the misconception that there’s an eating disorder that needs to be treated in a human body. When you have somebody with DID, you can have multiple parts that have multiple different eating disorders living in the same body.

Sam: Really?

Monika: Yeah, you can have a part with ARFID, you can have a part with bulimia, you can have a part with binge eating disorder, you can have a part with Orthorexia, you can have a part with anorexia and anywhere in between really. So for the purposes of people who treat eating disorders and have somebody who’s a DID or OSDD system, what you, I hate saying it like this, because I sound so bossy,  but what you need to start thinking about is less the standard of care for treating this one concept of an eating disorder and begin working really hard to get to know which parts hold eating disorders  and make a…form relationships with those parts and treat those parts,  but being actively facilitating communication within the system because almost every solution has to do with communication internally within the system. So for example, if I have a part that has a strong anorexia presentation of severe restriction, exercise, whatever, right? And it was just going to  go rogue and do whatever it does to the detriment of this body and everyone else in the system, and you only treat that part in isolation. That part never has the benefit of understanding and learning how its behaviors are impacting the rest of the system.  Like one of the most impactful things my therapist said to me was, well, said to my entire system, was like this announcement. She’s like,  “you all share one body. And unless you guys start working together to take care of it, nobody’s going to get to do anything that anybody wants to do.”  And there’s reality to that. There has to be system accountability. So one part going rogue, everybody’s still accountable for what happens as a system. So you’re kind of doing as a therapist, right? You’re doing therapy for the eating disorder the same way you would with anybody else. And you’re kind of doing like internal group and family therapy too.

Sam: Yeah, I was just thinking that.

Monika: At the same time.

Sam: Yeah, I mean, the therapist had to sort of find the common denominator. Seemingly all these parts have, you know, have desires and some of those desires overlap. You know, the fact that you all share a body and you want to take care of that body so you can get your other desires met, right? And so, yeah, it’s kind of like a family session.

Monika: I think one of the most astounding things for people who are systems to learn is you are just a part of the whole system. You know, even if you have a system with a well-defined host, you’re still a part. And every part is equally important.  And that, when you start realizing that, it’s a game changer.

Sam: Yeah. Every part is equally important. 

Ashley: So can… I just have a question about that? Can you help me then understand like the, I guess the self or the fronting? Is there a part that feels like congruent, like everybody is kind of present? 

Monika: Some systems, like some systems have a part that is like the host, it’s fronting all the time and it will be translating and negotiating internally with all of the different parts or it may share the body and be co-conscious, but it’s always around.  Or sometimes it’ll switch out and somebody else will switch in, but it’s usually the one that’s there most often. But you’ll also have systems where that is not the case, where you have a lot of rapid switching and parts know how to mask and look the same, but they are actually different parts. And then, you know, levels of co-consciousness, levels of amnesia. And that’s why the goal, like internal communication is so important.  If you’re not ideally, you know, having co-consciousness with the entire system is important or at least communication. So if somebody is coming forward who has no idea what just happened, they need to know something, you know, about in order to function.

Ashley: Why does the system have different parts? What is the function of those parts? How did they, why do they show up separated?

Monika: So, I mean, DID typically happens, right, prior to the age of six. Some say, right, it’s, some say like up to nine, but typically under the age of six and as young as the age of two, for example. And it’s basically parts are created or the roles are created to cope with the trauma itself. So when there’s something that happens that is truly too much to bear, you’re going to get a part, there’s all different names for parts and it’s whatever the person’s comfortable with. Part, alter, headmate, invite, herself, take your pick. Doesn’t really, whatever the person’s comfortable with. That it’s created to deal with the situation. So it’s a way of compartmentalizing to ensure that you survive. So like, if I had access to everything that was happening outside of school, I never would have been able to function in school. The physical pain, the emotional pain would have been, literally would have incapacitated me. I would have been rendered completely incapable of learning or making friends. So thankfully I had head mates that were really good at academics. Some that were really talented at reading, some thankfully that could figure out social norms and make friends, and I could have some semblance of a normal life part of the time. That also means that you have parts that are designed to withstand some really horrific experiences. So they are going to hold things and maybe they’re going to split experiences up where some parts will hold emotion, some parts will hold physical pain and other parts will hold a narrative in the same situation. Others might have a part that will always take care of a particular situation, a part that’s always potentially trafficked, for example.  We also, you know, IFS has roles. We think about the Self, capital S, you have protectors, managers, firefighters, exiles.  DID systems aren’t necessarily set up like that. I mean, parts can have those parts, but most DID systems have some combination of littles, which are tiny, know, child parts, middles, bigs, gatekeepers, which the gatekeeper decides who’s fronting when. Not every system has one. Caretakers, protectors, persecutors, which tend to scare people because they are often angry, raging and have scary behaviors typically directed at the system itself. But underneath rage, right, is fear and pain. So it’s important to remember that. You have trauma holders, memory holders, introjects, have you heard that term? An introject is a part that’s based on  either factives or fictive, so like a part that’s based on a real life person could be a celebrity or somebody in your family or somebody that you know.  A fictive would be a part that’s, you know, roughly based on a story time character.  You can have non-human parts, parts without bodies, animal parts. Some systems have a co-host or co-host and others don’t. But the goal for every part is survival of the system.

Ashley: I see.

Monika: It’s just survival.

Sam: Yeah, that makes sense. 

Ashley: Yeah. Thank you so much for sharing that with us. it just, as far as eating disorders are concerned, I just see, I wonder how much, how many of us have missed the mark here in working  in eating disorders and not screening for DID.  And especially, I mean, as you were saying, just thinking of  those folks who have experienced severe and enduring eating disorders, those folks who have experienced multiple bouts of being in treatment, those folks who just nothing tends to work. I mean, this has given me personally a completely different framework, really, in understanding who can come in my office, you know?

Monika:  I really hope that people who have, especially folks who have had eating disorders for a long period of time where nothing’s worked and multiple hospitalizations that they start getting screened, you know? I think if things could have been different for me, and I could have actually gotten that type of care, I think it would have been really different in a way. I mean, I guess I was lucky that I ended up with a bunch more trauma in my 20s so that my system just functioned. Again, instead of being in hospitals, I spent like 10 years in hospitals. But the lack of, even after that though, like the lack of attention to different parts having different eating disorders meant being sick a really long time.

Sam: Yeah. I can imagine.

Monika: And now I see these other folks that are struggling and it’s a little frustrating knowing that somebody thought to write a journal article about it back in 1993, but not about it. One more really quick thing, just because I think it’s super important for clinicians to understand. It is not just as simple as giving somebody the mid, which is free, available online if you’re a clinician. It’s a wonderful tool. It will do a diagnostic report for you. But you also have to remember that sometimes, of like what part is taking the mid.

Sam: Good point.

Monika: So are there, is it a collaborative process amongst the system? Is it a part that’s really aware of more things in life? So if you’re using it, you may want to give it more than once. It’s challenging because it is like 218 or 17 questions, which is kind of torturous when you have multiple parts weighing in. But. It’s they’re not foolproof. So like there’s nothing beats your clinical judgment and keen observation and curiosity.

Sam: Yes. Yes. Thank you, Monika. I know there are listeners today who might be out there who love someone with DID. How can you best support someone who has this disorder? What guidance can you give our listeners if you could talk directly to them right now?

Monika: I can give you the best example of somebody who was absolutely amazing at supporting somebody with DID.  There is a system on Instagram, I think they’re on TikTok also, and it’s called the Giannu system. Their husband, Jonathan, is like straight up goals. I was lucky enough to have them as a guest on my own podcast, which is called Healing My Parts. And Jonathan talked about how he developed relationships with all of the Giannu systems parts. They have multiple different parts, parts that didn’t like him at all, parts that liked him a lot and what that looked like over time.  And I think what you will see if you choose to listen to that or look them up, because I think they’re really worth watching in terms of the relationship. It’s so healthy. He has such unconditional love for them and he loves every single part. And he approached every part with curiosity the same way you would approach a separate person to say, tell me about you. Who are you? What do you like? What are you afraid of? How can I support you?  And sometimes that means giving certain parts distance and space. And for other parts, it means providing a lot of support and direction and guidance. But take the time to listen to them talk even for the 50 minutes or so of whether it’s the episode on my podcast or whether it’s just looking them up on their channels because they really are pretty phenomenal.

Sam: Wow, that is beautiful that someone would take the time to love and get to know each and every part. That really warms my heart to think that a person is out there doing that.

Monika: And I think there are actually a lot of people that do, you know, when you figure out that your partner has DID and it’s, it’s, yeah, it can be really touching.

Ashley: That’s awesome.  Monika, thank you so much.  I honestly, feel like we could have you on another episode. Thank you for coming back. Thank you for being so willing to share and advocate and this is just awesome. So thank you again. And thank you to our listeners. We greatly appreciate you all.

Ashley: Thank you for listening with us today on All Bodies, All Foods, presented by the Renfrew Center for Eating Disorders. 

Sam: We’re looking forward to you joining us next time as we continue these conversations.

Ashley: Thank you for listening with us today on All Bodies. All Foods. presented by the Renfrew Center for Eating Disorders.

Sam: We’re looking forward to you joining us next time as we continue these conversations.

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