SEASON 04 | EPISODE 05

Today we look back at Jo’s revelation in their twenties that they’d been a victim of Munchausen by proxy abuse: a moment that turned their world upside down. As Jo forges a path forward – reviewing their medical records and even confronting their childhood pediatrician – they discover how complex healing from this abuse truly is.

Jo also opens up about their experiences with Dissociative Identity Disorder. We speak to Jo’s therapist, Angie, about their complicated system of coping mechanisms. We also bring in Jackie Rodriguez LMSW, QMHP-CS and peer support specialist Jade Miller to help us understand the deeply misunderstood and stigmatized condition of DID.

Listen on: Apple | Spotify

[00:00:00] Andrea: Today’s episode includes descriptions of child abuse and may be difficult for some listeners.

[00:00:05] Andrea: Even for those of us who did not experience childhood trauma, memories of our younger years are pretty sparse. Partially because, for some of us who are hitting middle age, for example, these events took place many decades ago.

[00:00:19] Andrea: But [00:00:20] also, because our brains store memories differently as very young children, which is why you can’t remember, for example, being born. And this is why we rely on our parents, for the most part, to be the historians of our childhood. And this goes for our health history, too. I, for example, have a theory. I have a thin white scar from the time I put a tooth through my upper lip after I jumped off the deck at [00:00:40] age three.

[00:00:40] Andrea: But I don’t actually remember it. I do remember trying to catapult my friend off of a piece of plywood we found in the neighbor’s yard and putting a nail through my foot several years later. Ah, the 80s. But only my mom remembers taking me to the emergency room for my titlis shot. What if your childhood was almost nothing but these types of [00:01:00] stories?

[00:01:00] Andrea: With large swaths of your time being spent in and out of the hospital for an illness or emergency, and what if all at once, as an adult, you realized you couldn’t trust anything you thought you knew? People believe their eyes. That’s something that is so central to this [00:01:20] topic because we do believe the people that we love when they’re telling us something.

[00:01:24] Andrea: If we didn’t, you could never make it through your day. I’m Andrea Dunlop, and this is Nobody Should Believe Me.

[00:01:33] Andrea: If you’d like to support the show, the best way to do that is to subscribe on Apple Podcasts or on Patreon, where [00:01:40] you can get all episodes early and ad free, along with extended cuts and deleted scenes from this season, as well as two exclusive bonus episodes every month.

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[00:02:14] Jo: I was sitting in a class at the community college I was attending [00:02:20] in St. Louis and my professor in my psychology class happened to be talking about Munchausen’s and Munchausen’s by proxy and as she talked about it I suddenly just got flooded with memory after memory and I took out my phone and I wrote it.

[00:02:39] Jo: [00:02:40] All down in my notes and immediately emailed my therapy team. Kind of panicked because I had never heard of this and my whole life just kind of suddenly felt like it was go over

[00:02:52] Andrea: to say this revelation changed. Joe’s life is an understatement. And today we’re going to look at how they began the process of trying to [00:03:00] sort fact from fiction about this most intimate piece of their history, their own body.

[00:03:05] Andrea: By the time they learned about Munchausen by proxy, Jo’s relationship with her body had become deeply disordered, and the revelations about the abuse added yet another layer of complexity.

[00:03:16] Jo: At that point, I was struggling pretty immensely with an [00:03:20] eating disorder. I’ve struggled with an eating disorder since I was 14, um, and I also struggled with OCD and depression and anxiety and just a whole slew of different issues and some PTSD from other traumas.

[00:03:39] Andrea: [00:03:40] So what was your therapy team’s response when you told them this? Did they know about Munchausen by proxy? Did that sort of slot something into place for them or were they running to sort of catch up with the whole thing as well?

[00:03:55] Jo: They responded very professionally. I would say, [00:04:00] I don’t think that any of them really knew.

[00:04:02] Jo: What that was, I assume that they probably looked it up and looked into it, but all of them kind of responded similarly saying things like, well, that makes a lot of sense. And then when I had my following sessions, we were able to start talking through it more. But at that [00:04:20] point, I Pretty much stopped eating.

[00:04:23] Jo: I was having some pretty severe flashbacks and things like that and physically just every time I would try to eat would just start sobbing or get really sick. And so that kind of ended up being the focus over trying to figure any of that out even.

[00:04:39] Andrea: That must have been [00:04:40] incredibly overwhelming.

[00:04:43] Jo: Yeah, definitely.

[00:04:44] Jo: It was a really, really scary time and I mean, within a few weeks, I ended up back in residential treatment, which was just an interesting experience since I had just been figuring out that I had this medical trauma to [00:05:00] suddenly be in a medical setting.

[00:05:02] Andrea: That must have been really hard.

[00:05:05] Jo: Yeah, it was really scary, and I just remember feeling so lost and confused.

[00:05:14] Andrea: In order to get to the bottom of things, Joe began tracking down their pediatric medical records. [00:05:20] And we spoke to their long time therapist, Angie, about the process of helping Joe sort through this.

[00:05:25] Angela: As they got their records, and there was a lot of different records, um, They brought them in and, and had pulled out pieces that we were going to process and talk about in session that, you know, some would have landed incredibly hard.

[00:05:39] Angela: Um, some in terms [00:05:40] of wrestling, you know, with what was written down, um, and then all the emotions that encompass around, uh, the medical system. And then what does that mean in terms of relationship with mom? And, um, you know, it kind of just began to open up the doors for processing. Around this time is, you [00:06:00] know, when, honestly, shortly after the records came in and there was that clarity, the eating disorder started coming in stronger.

[00:06:11] Angela: And, um, you know, it honestly also brings a lot more clarity even in terms of the needs that the eating disorder comes in and how as a way of even [00:06:20] surviving and getting to the point to where they’re at today, you know, and, um, I’ve always said, I’m like, even prior to this, there was such, they have so much resiliency.

[00:06:32] Angela: And, um, you know, I, You know, reading through the records and starting to open up pieces that were [00:06:40] already there, but, you know, of course couldn’t be named at the time. You know, just to continue to show their capacity to work towards recovery and recovery and life, beginning to kind of peel back and see there’s almost like a hierarchy that comes in of like, what is most needed, you know, at this [00:07:00] time when, not to say the crisis hit, but to a degree, because this, This heavy thing just landed in terms of finding out information about oneself that was there, but actually having the name for it and the records for it.

[00:07:14] Angela: And, um, you know, what is most needed in this moment in terms of stabilizing [00:07:20] and then creating the capacity for more healing work to happen.

[00:07:25] Andrea: Having met numerous survivors at this point, this is a pretty common trajectory of discovery. Once they enter the outside world, something tips them off and it leads to the revelation that they were victimized.

[00:07:37] Andrea: And most perpetrators are never held [00:07:40] accountable. So even if survivors have some memories, for instance, of being in and out of court or interacting with CPS, they don’t have anything approaching the full story of what happened to them until they start digging for it on their own. Imagine how disorienting and how terrifying it would be if all of a sudden your own [00:08:00] body was a complete mystery to you.

[00:08:02] Andrea: And similarly to Joe, many survivors also struggle with disordered eating. Can you talk a bit more about the, the interplay between the eating disorder and This abuse and sort of, you know, both sort of [00:08:20] generally with eating disorders and trauma and then, you know, ’cause you’d said like that, you saw that almost as though as a survival mechanism and that’s really interesting to me.

[00:08:29] Andrea: Can you tell us more about that? Yeah,

[00:08:30] Angela: sometimes it can be, um, you know, I, the eating disorder for one absolutely. comes in each behavior. If you look underneath, there’s some sort [00:08:40] of unmet need underneath the behavior or else it wouldn’t be coming in and wouldn’t be happening. So my, I mean, honestly, my goal within it all is to, you know, um, get dive into that curiosity around what has the eating disorder become?

[00:08:54] Angela: Because a lot of times it It almost becomes like another primary caregiver, you know, and it [00:09:00] becomes looking at the relationship between intimacy and food and, you know, how does food show up for you in a way that like people don’t, and that could be restricting or binging, you know, on either side. Um, but really food’s not something we can get away from or else it actually does, you know, leave.

[00:09:16] Angela: to, can, can lead to death if somebody’s, you know, [00:09:20] starving themselves and, um, you know, at the same time we’re faced with it and throughout the day. And so really kind of looking to see what does, what’s the relationship between intimacy and food and, um, how has it become a way of survival and what ways is the eating disorder showing up for you in a way that a primary caregiver and attachment [00:09:40] caregiver has not.

[00:09:42] Angela: And it’s incredibly sad because it’s, um. You know, only like an illusion, it’s not a person, but it also could lead someone to like being able to survive and, um, you know, in some ways there’s such gratitude, you know, towards, towards it, but it can also be ultimately killing [00:10:00] the person. So it’s that dichotomy of like, it’s allowed you to survive and if it continues, it could actually end up killing

[00:10:07] Andrea: you.

[00:10:12] Andrea: I think what’s so interesting in sort of the parallels and like the sort of mirrors of The [00:10:20] perpetrator and their victim here is that like, Munchausen by proxy is also a maladaptive coping, like factitious disorders, whether it’s on yourself or by proxy, those are also maladaptive coping mechanisms.

[00:10:33] Andrea: They’re things that people do to get their needs met, to take care of [00:10:40] themselves essentially, that are also harming themselves and in some cases other people. I didn’t recognize until talking to Angie the ways in which eating disorders are also maladaptive coping mechanisms and people are doing it as a way to take care of themselves and that it’s something [00:11:00] that can get them through some other difficult thing, and also it’s not a viable long term strategy because it’s also harming you.

[00:11:12] Andrea: What are some of the specific things that you see Joe struggling with in terms of identity in terms of [00:11:20] their connection with the medical system, in terms of their connection with their own body. Like what do you think are some of the things that really are sort of specific to this form of abuse?

[00:11:30] Angela: One struggle that I, that I see is a lot of times a struggle between figuring out what is what’s real versus what’s [00:11:40] not.

[00:11:40] Angela: So when something’s happening in my body and I feel something, you know, is that real? And then in my, my heart breaks thinking that there’s a question of like, is it real? You know, that that’s heart, it’s heartbreaking because it touches on the abuse, you know, it touches on like, I’ve been, um, told these stories, not only told these stories, [00:12:00] I’m part of this, um, abuse.

[00:12:02] Angela: And, um, you know, how do I build a different relationship with my body and tune into my body and respond to the way that like my body needs and how much of the abuse starts to come in or gets tugged on within all of that. Um, you know, and, and does that mean then when I feel something in my body, do I [00:12:20] begin to dismiss it?

[00:12:21] Angela: You know, because I’m, you know, I’m fearful that like maybe there’s not anything happening in my body and so I need to just keep moving along and disconnect from my body. I feel like they have done so much work, you know, around tuning into their body and sifting through what’s getting triggered, you know, on the past and, um, you [00:12:40] know, and, and, and And some of that would hit on trauma in terms of like how other people navigated the situation with them in the past, you know, while the abuse is going on, um, you know, the medical abuse and then outsiders in terms of how they were responding to the situation and it, yeah, all of it’s incredibly heartbreaking.

[00:12:58] Andrea: Joe’s feelings about [00:13:00] doctors are complicated to say the least. As we heard in one of our previous episodes, they often felt like safe adults to Joe, something that was in short supply in their childhood. But there’s also some very real anger there, because ultimately, Joe was left in an abusive household.

[00:13:19] Andrea: It’s worth saying [00:13:20] that doctors are in a difficult position in these cases, and this is a dynamic that’s only getting more fraught in the wake of the Kowalski case that we covered last season. But once Joe had their medical records in hand, they realized that the doctor’s concerns about them went all the way back to the beginning.

[00:13:37] Jo: There’s definitely doctors that [00:13:40] were aware of what was going on by the time I was, I’d say, one and a half or two years old. Uh, if you look in my medical records, they started to make some very clear, uh, notes about these different things that my mom was doing or they gave Placebos because they knew that I wasn’t [00:14:00] really sick or just how they would write things It was very evident that they knew what was going on and by the age of four they started making reports about possible mentals and by proxy even though nothing ever came of that or happened from that so But there was also an anonymous letter [00:14:20] that was written, I believe, when I was four years old.

[00:14:24] Jo: I have no idea who wrote it. They called me Jojo in the note, which was something I went by when I was really little, by close family, so it must have been someone that knew me really well. And wrote a letter anonymously [00:14:40] to the hospital that I would go to, and they said that they were concerned that my mom was giving me cancer medication because she had access to that.

[00:14:51] Jo: And Uh, once again, nothing ended up coming of that or happening, but they did put that note, they had like a whole separate [00:15:00] file that they kept at the hospital that my mom couldn’t get access to that had all of the more serious sort of accusations or things that were going on.

[00:15:10] Andrea: Why did your mom have access to cancer medication?

[00:15:13] Jo: Uh, well, my mom also has Munchausen syndrome, and since she [00:15:20] was Pretty young. She has faked different ailments and illnesses and supposedly, according to her, at least. Uh, she has had cancer at least three times that I’ve heard about.

[00:15:36] Andrea: According to the research, previous Munchausen [00:15:40] behavior is really common in Munchausen by proxy perpetrator.

[00:15:43] Andrea: And anecdotally, it’s come up in almost every case I’ve looked at. There’s also a high comorbidity with the cluster B personality disorders. So that’s narcissistic, histrionic, and borderline personality disorders. And there’s also a high [00:16:00] instance of severe depression in these cases. So that’s all to say that these are certainly people who need psychiatric help.

[00:16:07] Andrea: And that’s something that I do want to maintain some empathy for. Though whether perpetrators can ever safely be around children or vulnerable adults is another question entirely. It can be really [00:16:20] problematic to talk about Munchausen by proxy as primarily a mental health disorder, because that often leads courts and child welfare entities to see the solution as getting some mental health help for mom.

[00:16:32] Andrea: And that is sort of the end of things. And that’s not sufficient in these cases. Was she taking you to the same [00:16:40] hospital over and over again? Were you guys in an area where there was, because a lot of times we hear about, you know, Mothers taking their children to a bunch of different hospitals, and that’s kind of one of the hallmarks of this abuse.

[00:16:51] Andrea: Did you, did you, were you mostly seeing the same doctors?

[00:16:55] Jo: I lived in a very small town. The nearest, [00:17:00] town next to us was a 30 minute drive. And so for the most part, we did go to the same hospital. For the most part, I saw the same doctor for a lot of my childhood. And then there were some specialty doctors that I saw at like children’s [00:17:20] specifically, but it was really just those To hospitals for the most part that I went to.

[00:17:26] Andrea: Were the doctors making reports to Child Protective Services? Were they making the reports to the police? You know, who were they reporting to?

[00:17:33] Jo: I get kind of confused because when I request, requested my Records from [00:17:40] CPS. There was never any note of any of that. And so that could just be because they never followed up on it or thought that there was anything going on.

[00:17:50] Jo: I know at one point, I believe when I was four, there was a guardian ad litem that was assigned to my case. And there was a lot more [00:18:00] reports that were made at that time. But once again, when I got records from CPS, there wasn’t. anything about any of this. So I’m not really sure where that discrepancy comes from.

[00:18:11] Andrea: So you don’t even know if there was ever an investigation into your mom?

[00:18:15] Jo: No idea. I know that they did some video surveillance and had [00:18:20] video surveillance of her over reporting and of her possibly inducing vomiting on me by various means, but that’s pretty much as far as it goes. There was The letter from the guardian ad litem where she, at the time, when, like I said, I was about four, she had [00:18:40] written that her recommendation was for me to have more time with adults other than my parents, and her hope for me was for me to develop a self identity of being a basically healthy individual.

[00:18:57] Jo: Which is very interesting given the [00:19:00] fact that at that point I supposedly had all of these really severe illnesses and ailments.

[00:19:07] Andrea: Um, with everything that you know now, what do you think was going on with that guardian ad litem or really any of these adults within the system that, that were supposed to be [00:19:20] protecting you?

[00:19:20] Andrea: Do, do you think they just weren’t taking it seriously? Do you think they didn’t understand that it was just lack of knowledge? What do you think was happening there? If you can guess.

[00:19:33] Jo: I think a lot of it was lack of knowledge, lack of understanding this type of [00:19:40] abuse. I know specifically for my pediatrician because I did confront her as an adult.

[00:19:52] Jo: Jo, how does it feel to see

[00:19:55] Andrea: Dr. Wilson?

[00:19:56] Jo: So good. So exciting. I mean, I haven’t, [00:20:00] well, I haven’t seen you in person since. I came to confront you in 2018.

[00:20:06] Dr. Wilson: Oh, has

[00:20:07] Jo: it been that

[00:20:07] Dr. Wilson: long? I was, I was excited that when you came, that I remembered that we had hidden some confidential files. I could say, you know, you’re an adult now, you can [00:20:20] have these files.

[00:20:21] Dr. Wilson: Yeah. And they had stuff in there I don’t think that you had access to before. Mm

[00:20:27] Andrea: hmm. As we record this, Jo is sitting in the same studio with Dr. Wilson, who they have not seen in person since Jo marched in ready to confront the doctor they thought was responsible for all of their pain and [00:20:40] suffering.

[00:20:40] Andrea: These days, Joe and Dr. Wilson are on great terms, and I’ll let them explain how it all went down.

[00:20:46] Jo: I mean, it was like, I was in that class in college, and my normal psych class, and then we had talked about it, and I was like, oh my gosh, this happened to me, and then, you know, obviously I went through treatment, and then while I was there [00:21:00] and saw all the records, like, most of the highlighted records were all records that Dr.

[00:21:05] Jo: Wilson wrote, and I was angry. I was like, she knew, she knew, and she let me stay there, and that’s like, not okay. Um, and I was like, I’m, I have to like, go meet with [00:21:20] her and tell her I’m alive, and it’s not thanks to her, and just like, teach her about this, and so that this doesn’t happen again. Good for you.

[00:21:29] Jo: And so I, yeah, I remember calling to make an appointment, and they were like, What? What do you mean? Like, none of it made sense. Um, but I was persistent. I was like, I don’t know what else [00:21:40] to do. And I think that’s like, one of the hard parts is, as an adult, trying to get a hold of any doctors that you did see is so difficult.

[00:21:47] Jo: Unless, like, the doctor knows you and is like, Oh wait, yeah, let this happen. Um, usually like I’ve been told they’ll be like, Oh, we’ll give them this message, but then they don’t even do that. So [00:22:00] it’s like, um, and it’s like a weird thing, right? If I’m like, Oh, I want to talk to this doctor that I saw as a kid to like, talk about medical child abuse and what happened, like, that just doesn’t make sense to a lot of people.

[00:22:12] Jo: So I’ve been very, very fortunate one and even getting my records. Um, I. Every day I work with [00:22:20] people who can’t get a hold of any of their records for a variety of reasons. Um, and I wouldn’t have even gotten a lot of the really more like severe notes and stuff if it hadn’t been for Dr. Wilson. Um, in our in person meeting.

[00:22:36] Jo: And so that’s like, I’m very fortunate for that. And I’ve also been [00:22:40] fortunate in the fact that my doctors, and like, were trying to help and have been like, so kind in talking to me now as an adult. Um, but I remember going in, I brought my friend Heidi, and Heidi waited in the waiting room, and I went in.

[00:22:58] Jo: Ready to like [00:23:00] throw hands or something. Just kidding. And metaphorically, metaphorically throw hands. Yeah, I could never, I would never. Um, but I was angry and we just cried. We cried a lot and she just told me that, yeah, that [00:23:20] she was like surprised I was alive and more than that, that I wasn’t addicted to drugs or anything like that.

[00:23:25] Jo: And, um, Everything about how I viewed the situation changed in that moment. I think until that moment, I blamed the doctors. I thought this abuse was all the doctor’s fault. [00:23:40] Um, and in that moment, I was like, Oh, the doctors tried. They did literally everything that they possibly could and are actually the reason that I’m alive.

[00:23:51] Andrea: You’ve heard Joe say this, that someone kept them alive, a few times this season. And I want to underscore here that this is not [00:24:00] hyperbole on Joe’s part. One of the reasons we still advocate so strongly for reporting abuse, even though it can feel hopeless, especially in the current climate, is because slowing down the abuse or limiting the perpetrator’s access to their victim, even temporarily, can mean the difference between life [00:24:20] and death.

[00:24:20] Andrea: So when Jo says this, they mean it literally. What do you, what do you just, what do you remember about Jo?

[00:24:31] Dr. Wilson: Oh, I mean, she was a cute little thing and sweet and quiet most of the time and, and, um, I [00:24:40] started taking care of her when there were medical issues coming up or supposed medical issues and, um, then I was seeing her more frequently and, and trying to sort through what was going on with you and, and I guess in a nutshell, it just went on for a while until I was getting [00:25:00] very concerned and somewhat suspicious and, and trying to document things and.

[00:25:08] Dr. Wilson: Then her mother took her out of my care.

[00:25:13] Andrea: Yeah. So what do you remember about what [00:25:20] flagged this as a possible abuse situation for you? What was the pattern that you were noticing develop?

[00:25:26] Dr. Wilson: Um, exaggeration of symptoms. Um,

[00:25:32] Dr. Wilson: the mother seeming to be overly solicitous with myself and the medical [00:25:40] people, where you were starting to get concerned that she was getting some secondary gain, um, out of her child being ill, um, a pattern of unusual symptoms that we couldn’t really confirm. [00:26:00] So

[00:26:00] Andrea: you did take the step of reporting your suspicions.

[00:26:05] Andrea: Yes.

[00:26:09] Dr. Wilson: Well, what, it’s the same thing that happens a lot of times is that you get a lot of questions about, [00:26:20] do you really think this is true? And isn’t the parent just anxious? And, um, you know, like, well, in another case, not, not Joe’s, but I was, took this to the correct, in the county and they told me it is not [00:26:40] a crime to lie to your doctor.

[00:26:43] Dr. Wilson: So they didn’t feel that someone lying was any type of crime or anything that they could investigate or prosecute. She said, well, if we prosecuted everybody that lied to their doctor, then we’d have so many people in jail that, [00:27:00] you know, And, and that’s part of, that was a little bit ago where we were kind of talking a lot about Munchausen by proxy which put the focus on the parent and now we’ve kind of gone to more saying that this is more like child medical abuse.

[00:27:18] Dr. Wilson: So we need to look at it more as the [00:27:20] medical abuse of the child rather than trying to figure out the state of mind. of the parent who’s doing it. But, but trying to get that through to people is very difficult.

[00:27:32] Andrea: How do you distinguish as a pediatrician in terms of when you’re going to report or [00:27:40] not? Um, when it’s an abuse situation, potentially, how do you distinguish between, is this an anxious parent or is this someone who is abusing their child?

[00:27:50] Dr. Wilson: Well, it, you know, it’s probably 99 anxious parents to everyone that’s, uh, uh, child medical abuse. Um, and [00:28:00] sometimes they’ll maybe exaggerate a symptom because they want you to take them seriously. Um, but their focus is, is on the child. And you can talk to them and you get this understanding that they’re worried about their child and there’s a real symptom there.

[00:28:18] Dr. Wilson: They’re usually relieved [00:28:20] once you sit down and talk to them and explain things to them and figure things out. Um, I had lots of anxious parents. They love their kids. And they, they learn to trust you and you treat the kids and, and it’s normal. [00:28:40] But when we start getting into these weird symptoms or when the parents have told us, um, Multiple different stories, or I go back into those records and I find out they’ve been to six or seven different doctors and told them different stories that don’t make sense.[00:29:00]

[00:29:00] Dr. Wilson: And I see that the kids had lots of interventions that I would consider harmful. Then I start to worry about a parent doing this as a way to abuse the child. for whatever reason.

[00:29:19] Andrea: [00:29:20] Right, so very different to have a situation where you’re seeing evidence of intentional deception to practitioners, right, than a parent that is anxious.

[00:29:31] Andrea: Because of course, you know, I have two little kids. I think especially with, you know, your first one, right, it’s very normal to be anxious about everything, [00:29:40] right? Yes.

[00:29:42] Dr. Wilson: That’s what I do every day. Yeah.

[00:29:44] Andrea: Yeah, and I think there’s this, um, To my mind, pretty unwarranted fear that by raising awareness of the existence of this type of abuse, that doctors are going to get sort of trigger happy about reporting.

[00:29:59] Andrea: And I [00:30:00] don’t think that that’s really, I don’t worry that that’s going to happen exactly for the reason you said, right? Because if you were reporting on every parent that seemed a little anxious or who seemed like maybe they were exaggerating a situation, then you would report, you know, a huge percentage of the parents that you’re seeing.

[00:30:16] Dr. Wilson: Mm hmm. Well, and there’s a lot of disincentives for us [00:30:20] to report anyway. I mean, there’s a lot of time involved in this. Um, that’s certainly not reimbursed. Uh, there’s a lot of, um, people that will say that you’re doing this for wrong reasons, or, [00:30:40] um, question you about it. Um, There’s a lot of reasons not to over report.

[00:30:48] Dr. Wilson: There’s even legal reasons. I mean, you can get sued. There’s lawsuits out there for people who brought up issues of possible medical abuse. And the parents have sued them or gone on, [00:31:00] gone on media and sued the doctor who suggested it. I have seen horrific abuse by parents under the guise of medical issues, whether it’s actually causing it.

[00:31:12] Dr. Wilson: the injury to their child and blaming it on a medical or a mental health condition or actually [00:31:20] causing the physicians or surgeons to abuse their child. It’s, it’s much more horrific type of abuse than, like I said, hitting you with a baseball bat.

[00:31:32] Andrea: Yeah, and I get the sense a lot of people don’t quite understand how dangerous this form of [00:31:40] abuse really can be because in, you know, if it becomes severe and it often escalates over time, we see that pattern a lot.

[00:31:46] Andrea: It can very easily be life threatening.

[00:31:49] Dr. Wilson: I don’t get very much follow up on these patients and a lot of them don’t make it. First time Jo came back to me, I was like, hey, hallelujah, [00:32:00] she’s alive. She’s alive.

[00:32:10] Andrea: While we were in Hutchinson together, a trip that, as you can imagine, had triggers around literally every corner, Jo opened up about one of the consequences of the extreme [00:32:20] trauma that they experienced as a child. Jo has been diagnosed with Dissociative Identity Disorder, or DID. I

[00:32:27] Jo: have DID, but I am starting to kind of multiplicity, um, because I think that Especially, like, with where I’m at in my own healing and things like that, I [00:32:40] don’t see it as a disorder in any way.

[00:32:42] Jo: It’s a product of severe trauma, for sure, um, and it’s just how my brain operates and works and there’s just a lot of different alters or parts all kind of fragmented off living little lives. I think, [00:33:00] since being here I think in my normal life, I guess, outside of this trip, it’s been like a lot more like co consciousness is kind of what the term that we use a lot.

[00:33:13] Jo: It’s like we’re all on a bus and sometimes I’m driving the bus and so that means like I have access to [00:33:20] like my body and my words and things like that. And then sometimes I’m on the back of the bus and I have no ability to do anything but I can see. Um, and I feel like it’s gotten to a point, for the most part, where I feel like all the parts that need to be around are kind of like driving the [00:33:40] bus together and working together, so there’s not what we would say like time loss, so I’m not like forgetting things or ending up in weird places or like things like that, but Sometimes that happens, depending on maybe what’s going on, but it’s been like more cohesive, I feel like, in my daily life.

[00:33:59] Jo: Since being [00:34:00] here, I feel like, it almost feels like constant switches. Like, I feel like different parts are like, oh, am I supposed to be out right now? Wait, no, it’s supposed to be me. I think it’s supposed to be me. And it’s just like this, like constant, like back and forth. And then like, I just feel kind of, everything, my brain feels kind of like cloudy or [00:34:20] foggy.

[00:34:20] Jo: So I just feel like it’s. I’m in this weird dissociative sort of state, like I’m still aware of. who I am, like where I am in time and space and all of that.

[00:34:32] Andrea: Dissociative disorders are a deeply misunderstood and stigmatized phenomenon, and this is something I was keen to learn [00:34:40] more about. Partly to understand Joe better and be able to support my friend, but also because this is important to the work of helping Munchausen by proxy survivors, many of whom experience intense levels of dissociation as a reaction to the severe childhood trauma they’ve experienced.

[00:34:57] Andrea: Even among therapists, thorough knowledge of [00:35:00] DID is pretty rare. So we were lucky to find a therapist who specifically works with clients who have DID.

[00:35:07] Jackie: My name’s Jackie. I’m a trans therapist in Austin, Texas. I do a plethora of things. Um, right before this, I was finishing my master’s [00:35:20] in social work. And for the past year, I was working with the local mental health authority doing, um, case management.

[00:35:26] Jackie: For people that were going through schizophrenia, DID, um, some of the, the, uh, the more like trauma based, I mean, they’re all trauma based mental health issues, but like, those are tend to be really intense [00:35:40] and chronic, uh, over the lifespan. So that’s most of the work that I do there.

[00:35:45] Andrea: What causes

[00:35:47] Jackie: DID? A really messed up lottery system of like trauma happening whenever you’re young.

[00:35:53] Jackie: And usually when trauma happens at a young age. People may end up having, uh, post traumatic stress [00:36:00] disorder, or some sort of personality disorder, or like DID. And really, it’s just, there’s a million different factors that can go into, like, what ends up happening with somebody. Like, they’re intergenerational trauma, just like the trauma of their, like, ancestors, um, the way that they were raised by their parents, [00:36:20] um, specific, like, big T traumas that, like, might happen, like, in one instant, like a tornado or, like, some sort of natural disaster.

[00:36:28] Jackie: Um, so I really, I wish I could tell you more specifically, like, if this happens, then this happens, but it’s really, like, if this happens,

[00:36:35] Andrea: all this could happen. It sounds like this is maybe one of [00:36:40] the, Less well studied. Disorders that, I mean, has there been a lot of research on this? How has that research sort of evolved over the last several years, 10 years?

[00:36:53] Andrea: What have you?

[00:36:53] Jackie: I have opinions on the research.

[00:36:56] Andrea: Yes, please.

[00:36:57] Jackie: So, um, I guess since like [00:37:00] the inception of like psychology, like research about DID has been very dehumanizing. Um, and like, we can see that like portrayed in media as well. How, like, Characters that have DAD, like, are extremely dangerous, or like, um, are totally not in control of what’s going on in their bodies, but, like, [00:37:20] the, the real, the reality of it is that, like, these are normal people that just are a little bit more split than the rest of us.

[00:37:27] Jackie: And, like, there’s different, like, therapy modalities that believe that all of us are somehow parts, but there’s the integration of all of our parts are a lot closer, and the trauma of, like, Um, going through something very heavy could [00:37:40] like split those parts up further.

[00:37:41] Andrea: When you’re working with clients that have DID, what sort of things do you work on in terms of treatment and coping mechanisms and that kind of thing?

[00:37:51] Jackie: Yeah. So the primary work that I’ve seen, um, in my neck of the woods is usually psychoeducation, which is [00:38:00] just like, you know, naming the things that are happening or that they’re experiencing, giving them like words that could like resonate with them and make sense, um, or giving them tools to like explain to their peers or to their friends or to their family, um, or like, Like why this like thing exists and how this is not like a scary [00:38:20] thing and this is simply just another like state of being That a lot of people have have gone through and it’s not something that needs to be othered or cured or fixed Um, yeah, so it’s mostly like De-stigmatizing work that we do.

[00:38:36] Andrea: Joe explained to me that for them, DID feels like [00:38:40] being on a bus full of people. Sometimes you’re the passenger and sometimes you’re the driver. They can typically observe what is happening, whether they’re in the driver’s seat or not, but not always Jackie explain. Another way to conceive of this experience,

[00:38:54] Jackie: I would say it’s a lot like how a family tries to navigate, um, one part of[00:39:00]

[00:39:04] Jackie: person household, like a kid is like struggling with school and The rest of the family is just trying to help them, like, support their, like, goals to do the things that they want to do. So it could be very much like that, just like, and all of it happens inside one body, [00:39:20] instead of everyone has their own body.

[00:39:22] Jackie: In, like, this reality that we’re in.

[00:39:28] Andrea: As Jackie mentions here, the depictions we see of DID in popular culture are not good. Multiplicity is either played for comedic effect, as in the popular Showtime series, [00:39:40] The United States of Terra, and I love you, Toni Collette, but yikes. Or people with DID are portrayed as untrustworthy and dangerous, as in the 2016 M.

[00:39:51] Andrea: Night Shyamalan film, Split. I’ve never seen a case like this before. 23 identities live in Kevin’s body. [00:40:00]

[00:40:00] Angela: Did something happen?

[00:40:03] Andrea: So I spoke to someone who works regularly with folks in this community to give us a more realistic picture.

[00:40:08] Jade: I’m Jade Miller. I have been a peer support worker for about five years now for people mostly who are extreme trauma survivors and all have some kind of dissociative disorder.

[00:40:19] Andrea: Jade [00:40:20] has a complex and harrowing history of childhood trauma, and after facing numerous barriers in trying to get mental health treatment for her own dissociative identity disorder, she developed a network to better inform and help those living with DID. Can you talk a little bit about what does the media [00:40:40] get wrong about multiplicity?

[00:40:43] Jade: Yeah, um, the biggest thing I think is that there’s something dangerous about us because they just love to do the lazy writing of like, Oh, well, this mystery is solved by this person having a serial killer personality. So, um, I, I don’t think any multiple is any more likely [00:41:00] to be a serial killer than anyone else in any random cross section of the population.

[00:41:04] Jade: And honestly, like, because of our trauma histories, most of us are more likely to be hurt by someone else. than we are to hurt someone. So, um, I think that’s probably one of the biggest things. And I think too, that they make a lot of mistakes about like portraying the switching that we [00:41:20] do as this like big, dramatic, noticeable, like dissociation is about hiding.

[00:41:25] Jade: And blending in and being able to function even when we shouldn’t really be able to function. So I have met some systems that do switch very dramatically, but that’s not, that’s not usually the norm for multiple systems.

[00:41:37] Andrea: Yeah. Because I’m thinking about when it’s been [00:41:40] portrayed on screen, uh, you know, it’s like the person like suddenly turns around and they’re like wearing a different hat or something, or like have a completely different voice.

[00:41:49] Andrea: And they’re like, so and so’s here. And it’s like, obviously extremely cartoonish. Um, yeah. I mean, I’d, I’d love to hear from you. So, you know, if you can give us sort of a [00:42:00] better viewpoint on what that feels like, what you mostly see, you know, obviously no person’s experience is monolith, but like, what is a more typical presentation of being a multiple?

[00:42:13] Andrea: Like if you were around someone who was having that experience of, of switching, like would [00:42:20] you notice typically, or would it be, you know, what, what would that normally present like?

[00:42:25] Jade: Well, I think for me personally, because I have the knowledge I have, I am more likely to notice. But, um, I think by and large, culturally, it probably happens a lot and people are socialized not to notice.

[00:42:38] Jade: So, it could feel more like an [00:42:40] energy shift from the person, or it could feel like a mood shift. That’s probably what, people call it most of the time. If they’re seeing that in someone that they’re close to and not comprehending that, no, this person is actually a multiple, they probably see things that look like extreme mood shifts.

[00:42:56] Jade: And they may be extreme sometimes, but they may not [00:43:00] even be that extreme all the time. Rarely do people use a different voice, but I mean, the voice that we have is the voice that we have. So, I mean, they might be using a slightly different tone or a different, um, I don’t know, like timbre of voice, but.

[00:43:14] Jade: It’s, I don’t know that it would be that noticeable unless you know what you’re looking for.

[00:43:18] Andrea: I really liked this [00:43:20] metaphor, it said, it feels like they’re on a bus full of people and sometimes they’re driving the bus and sometimes someone else is driving the bus. They’re always there, but like, they’re not always completely at the wheel and that sometimes that’s been very extreme where they had, you know, periods where they didn’t like sort of, you know.

[00:43:38] Andrea: Um, and they didn’t know how they [00:43:40] got there and that kind of thing. And that was really scary. But these days it’s mostly like they’re always aware of their surroundings, but sometimes they’re just not completely in the driver’s seat. Um, is that, is that sort of, I mean, again, I think everyone probably has a slightly different experience of it, but I mean, is your, is your experience kind of analogous to that or do you have sort of a different way of [00:44:00] conceptualizing it?

[00:44:00] Jade: It is these days. It wouldn’t have been in the beginning. Like in the beginning it was more like you’re either driving or you’re like in the back of the bus. Okay.

[00:44:09] Andrea: Okay.

[00:44:09] Jade: But that’s the more extreme version of dissociation. That must be really terrifying. It can be. It definitely can be. And, I mean, I think people don’t necessarily [00:44:20] understand that, like, there are situations you can be in as a dissociative person that are also traumatizing.

[00:44:26] Jade: I mean, there was a time when there was just so many traumatic things going on that I, as a part, wasn’t present for about a month. And when I came back, people don’t understand that like, this is traumatizing [00:44:40] too, to realize that you’ve missed a month and you don’t know what’s happening with work and you don’t know how your child is and you don’t know anything.

[00:44:48] Jade: So that itself can be traumatizing.

[00:44:50] Andrea: Yeah, absolutely. I mean, what does that, what does that feel like? I mean, do you feel like you’re traumatized? [00:45:00] Like, you’re sort of, literally haven’t been there, and you sort of, does it, you experience it as though you sort of almost black out for a month and then you’re back.

[00:45:08] Andrea: Mm hmm. Yeah. And, I mean, how do, like, during one of those periods, how were other people understanding what was happening to you, or were they not?

[00:45:19] Jade: They weren’t. [00:45:20] So it’s like someone came into your house and flipped the calendar and changed the clock, That’s all you know, and there’s evidence of things that have happened in these other dates that supposedly went by, but you don’t have any neural traces to it.

[00:45:35] Andrea: Yeah, that, and that must be extremely isolating. It sounds like there’s also [00:45:40] sort of a, um, spectrum of dissociation that people can experience without having the multiple identity piece, is that right?

[00:45:49] Jade: Yeah, so on one end you have, like, the mild experience, like, um, daydreaming or even, like, highway hypnosis.

[00:45:56] Jade: A lot of people have experienced where you just get lost in thought while you’re driving [00:46:00] and you’re sort of on autopilot and you don’t remember the right home. So that’s a mild experience of dissociation and then you’ve got, like, moderate, where you may have like extreme mood swings and maybe some loss of memory, loss of continuity between those mood swings, but not, not super extreme, doesn’t disrupt your life, isn’t super noticeable.

[00:46:19] Jade: And then [00:46:20] you have like the full blown multiple identities who are operating independently and usually outside your awareness.

[00:46:26] Andrea: And that’s when you talked about the amnesia. Barriers is that Mm-Hmm. what we’re talking about where you don’t have memories of what the other parts are experiencing. Yes. So they’re not sort of in communication with each [00:46:40] other.

[00:46:40] Jade: Correct. Mm-Hmm. .

[00:46:42] Andrea: And that sounds, I mean, that, that sounds like it would be a pretty significant barrier to functioning.

[00:46:49] Jade: Yeah. It, it definitely can be. Now, most people in who are multiples from trauma do have functioning part. Otherwise, they wouldn’t make it so long. They wouldn’t make it at all, probably. [00:47:00] Um, but a lot of times, over the many years that they have to utilize those functioning parts, the energy that it takes to keep those amnesic barriers in place, and even, like, keep their functioning parts functioning, they just wear out.

[00:47:14] Jade: They get exhausted. If you don’t have someone reinforcing those barriers, they’ll just break down, naturally, [00:47:20] over time. But it usually takes some time. It’s a while. It usually takes until 50s or 60s.

[00:47:25] Andrea: And so that’s sort of the schedule that would happen? Yes. For those of

[00:47:35] Andrea: us that have someone in our life, these things, what can we do to [00:47:40] be a good support for that person?

[00:47:43] Jade: I think a really good start would be to just ask that person, like, what they need from you. What they need to be comfortable, what they need to feel supported. Because there are probably going to be parts inside that are more shy.

[00:47:56] Jade: And there may be parts inside that really do want to have outside [00:48:00] friends. Like, I don’t know if people understand that, like, sometimes just being a member of a system can be very lonely. Like, all you have is your other inside people. And that’s not to undermine, like, the importance of them and the camaraderie that can be there, but just being able to have friends, like, as an inside part can be really significant.

[00:48:17] Jade: I mean, if you think about how much trauma is involved [00:48:20] with developing DID, a lot of times they didn’t grow up having the just everyday experience of having a bug that they can watch a movie and eat popcorn with. Like, you don’t have to be willing to listen to flashback memories of extreme trauma. You can just, like, be open minded and let whoever, whichever part wants to be out, just be out and be cool with it.[00:48:40]

[00:48:40] Jade: You could ask, um, your person, like, do your parts want to be noticed when they come and go? Um, if they do, then maybe you can ask every now and then if you perceive like an energy shift and just say like, Hey, who’s with me now? And just ask. Um, I think the best start though would be to ask your friend because they’ll tell you and it may be very [00:49:00] individualized.

[00:49:07] Andrea: Something that has struck me often in making this show over the past several years is that we as humans always have more in common than we think we do. And it’s worth finding a way in to [00:49:20] understanding one another’s experiences. If you’ve never experienced it, dissociative identity disorder, much like the Munchausen and Munchausen by proxy phenomena that we talk about on this show, can be tempting to put in a box marked, And I honestly wonder sometimes how much the [00:49:40] appeal of true crime content is doing just this, holding the things that we’re afraid of at arm’s length, as though, quote, don’t get murdered, as the latter half of one famous show’s tagline goes, could actually be actionable advice.

[00:49:56] Andrea: But I think this is the wrong way to look at things that scare or [00:50:00] unsettle us. And I think that leaning into our curiosity, as long as it’s paired with empathy, can take us in the other direction. Since having these conversations with Jackie and Jade, and talking more to Joe about their experiences of multiplicity, it struck me what an extraordinary thing the human mind is.

[00:50:19] Andrea: How it [00:50:20] finds such ingenious ways to survive this moment. seemingly unsurvivable. And there’s so much of this that I also just find relatable. You know, on some level, we’re all many different people at once. We have the person we are around our closest friends and our family, the person we are to our children, the person we are at work, [00:50:40] the childhood self that sometimes comes up at a moment’s notice.

[00:50:43] Andrea: And DID is certainly a much more extreme version of this, and that’s not to undermine the very real challenges, but we all contain multitudes, don’t we? As Joe and I have grown closer over the years, their multiples have begun to see me as a safe person. [00:51:00] And occasionally, they reach out. And I find this really touching.

[00:51:04] Andrea: Honestly, I feel honored. And if it sounds strange, it’s really not. They let me know when they’re there, and Joe lets me know when they’re back. It’s just like when a friend lets you in on any vulnerable piece of their history. It just makes me feel closer to Joe. [00:51:20] Next time, we go to the doctors. The TV show, that is.

[00:51:26] Doctors: Throughout the show, Jordan has claimed her mother inflicted repeated medical abuse and that she’s a victim of Munchausen by proxy. Her mother, Donna, has a different story.

[00:51:38] Andrea: Nobody Should Believe Me [00:51:40] is written, hosted, and produced by me, Andrea Dunlap. Our senior producer and editor is Maria Gossett. Greta Stromquist is our associate producer.

[00:51:48] Andrea: Engineering by Robin Edgar. And administrative support from Nola Carmouche. Music provided by Johnny Nicholson and Joel Schupach. With additional music and sounds from SoundSnap. [00:52:00] And thank you to Cadence3 for additional recording support.