S04 Ep07: The Body is a Battlefield

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Before we begin, a quick warning that in this show we discuss child abuse, and this content may be difficult for some listeners. If you or anyone you know is a victim or survivor of medical child abuse, please go to munchausensupport.com to connect with professionals who can help.
Many of us have difficult relationships with our bodies, especially as we're coming of age. And if there's ever a relationship worth working on, it's this one, because this is as omnipresent as it gets.
It's like that old saying, wherever you go, there you are. Joe had made big strides in their 20s.
They decided they wanted to help other abuse victims and survivors and enrolled in school to get their bachelor's and then their master's in social work at a small college in St. Louis.
They were making progress on all fronts, and they'd even found their way back into something that had brought them joy growing up, cheerleading. Joe joined their school's cheer team and began building a new kind of relationship with their body, one where they embraced how capable they were rather than how limited.
I'm a former college athlete myself, and this is a really special experience. I'm also just a big lover of exercise, and this isn't a wellness podcast, so I won't expand on the many mental health benefits of exercise here, but needless to say, they're well-documented.

So it's not surprising to me that exercise was something

that helped Joe reconnect with their body.

But to be in a body as a Munchausen by proxy survivor

is always precarious,

because even once you've dispelled the imaginary health issues,

real ones still come up.

And just when Joe was feeling stronger than ever, a concussion stopped them in their tracks. It's not going away at all.
And it's just getting worse. And it should be better by now.
And I'm really scared. And I just keep having flashbacks to my mom when she faked all the concussions and just, like, all the other fake illnesses and stuff.
And the fact that, like, I just keep going back and forth where part of me really likes feeling so sick because it feels validating or comforting or something. But then that makes me think that I'm faking it or over-exaggerating my symptoms because I should just be wanting to get better.
And I do. I want to get back to my life.
So I'm kind of forgetting what life was like when I wasn't sick.

I can't really remember. And so I'm scared to feel better because it's hard to, like, picture myself being healthy again.
And I'm scared that I'm just going to go backwards. I don't know what's happening because of it.
And I don't want to lose everything.

People believe their eyes.

That's something that is so central to this topic because we do believe the people that we love when they're telling us something.

If we didn't, you could never make it through your day.

I'm Andrea Dunlop, and this is Nobody Should Believe Me. about scratching could take me out of the moment.
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Dealing with a concussion would be horrible for anyone.

But for Joe, whose mother constantly told them as a child that they had concussions when they didn't, it wasn't just disorienting, it was potentially annihilating. They doubted their own experience of their symptoms, and they felt fear and shame as they backslid into the comfort of the sick role that they'd been trained from birth to inhabit.
And it was clear that their recovery from their concussion, just like their overall recovery from their trauma, was going to be full of ups and downs. Today, I feel more hopeful.
I, like I said, I had a better day and I feel like if I can find the balance between rest and, um, pushing myself a tiny bit to be able to have somewhat of a quality of life, I think that's kind of where I'm at right now. Um, it on the days that the depression's a little higher or that the inability to sit up is a little worse.
But I'm just trying to hold on to baby steps and baby progress and figure out little shifts that I can continue to make, no matter my physical state.

So hopefully I can continue to do that.

It's confusing because one second I'm healthy,

and the next second I'm sick.

And that's how it was before, right, with mom.

One second I was healthy, being able to do gymnastics and run around with my friends outside and the next second I was in the hospital told I was dying and it feels like this constant whiplash and it's not just oh you're sick and then you then you're going to actually just like fully healing, get better. The healing for this is so all over the place that how am I supposed to believe I'm really sick? Angela, who's been Joe's therapist for years, remembers helping them through this challenging time.
In terms of tugging on triggers, I remember feeling so much for them, thinking like of all things to get tugged on and walking through that for such an extended period of time. In terms of navigating all the physical symptoms within that, there was a lot of work in terms of tuning in to their body, not knowing what was happening, questioning what kind of medical care do I need?

Is it going to help? How much of this kind of questions of how much of this is real? And, you know, come to find out it's all really real. But the questioning of it just tugs on the trauma of what they walked through in the past.
Yeah, absolutely. And I think that one was, you know, it really struck me listening to Joe talk about that in particular because concussions was one of the things that their

mom was always telling them that they had. This abuse is so psychologically damaging

because these dynamics have been so deeply embedded in the victim that even when they

get some distance from their abuser,

that person lives on in their programming.

Being sick and or acting sick,

often a hazy line indeed for survivors,

isn't just a habit, it's a survival mechanism.

It's how they got the attention and love they needed from their caretaker. And Joe's concussion brought up a whole slew of confusing feelings about their mom.

I'm at home with my mom taking care of me. I have a lot of dreams about my mom pretty much every day.
I literally have to have a nightlight so that when I wake up at night, I can reorient and see that I'm not with my mom. So usually when I have dreams about my mom, they're like nightmares, and I'm so scared when I wake up.
But right now the dreams are kind of comforting and they just make me wish that I really was with her. It feels really gross and bad and wrong.
And even though Joe, by this point, knew what their mom had done, Angela explained that this bond still runs really deep. So when you have a primary caregiver that honestly is the person that they're relying on for all of their needs, and there's a bond that develops within the person that's taking care of them, and you would of course want that bond to be secure, loving, attached bond, but in a situation where there is abuse that's happening, they're also in that place of being comforter.
And so they fall down and get hurt, and they're running to the person that is the perpetrator and the person that abused them. And it's the only person sometimes that is there.
And in the situation with them, they were the only person that was there in the house that they're running to. And so it's, there's a bond and that trauma bond that then ends up developing.
And they're also caretaking their perpetrator, you know, in terms of emotionally taking care of them and making sure that they're okay. Sometimes even trying to stay safe within all of that.
And the roles are for one, completely reversed. And so they're wrapped up in terms of taking care of their abuser.
And that trauma bond then develops. And there can be a lot of different pieces then that end up accompanying it later on in life in terms of guilt with even naming and speaking to the abuse and giving space for their story because Because there was also this, there was a lot to untease in terms of that grief in terms of what you would want and have hoped for a relationship and, you know, with their mom and then also just the trauma bond in itself.
One of my biggest worries with my niece and nephew is that even when they're grown up and get out into the world a bit, they won't be able to come to terms with what's happened to them. There isn't any long-term data available on Munchausen by Proxy survivors, so we don't know how many of them are able to break free from their abuser and grapple with their abuse, and how many just stay in the thrall.
But anecdotally, from my experience with my fellow committee members and the survivors in the support groups, seems to be about half and half, often with those splits happening within families. There are a number of well-known cases where survivors have denied their abuse and defended their abuser, despite extensive evidence of the abuse.
Jennifer Bush was one, and Maya Kowalski, at least so far, is another. Listening to Angela explain how this trauma bond works, it helps me understand why it might be so hard for a survivor to ever break away.
And then there's the effect of the gaslighting. In terms of like walking through and experiencing in any forms and in the amount that they walk through in terms of the medical abuse, it starts to tug on core beliefs, self-worth.
How do other people view me? What's happening in terms of my own beliefs about myself. And that really

huge part of the healing work too is that all the abuse, you know, and everything that happened that got done and put on and they were abused throughout that process, which is incredibly heartbreaking. And it starts to develop into a belief of like, I'm a bad person.
And so un-teasing and untangling all that to separate from that being put onto them, you know, within all the abuse is a lot easier said than done, but that's been a huge part of the work as well. Yeah.
And I'm, I'm curious to dig into that a little bit because I've, Joe has said that many times of fearing that people think that they're a bad person, thinking that everyone hated them. And, like, you know, I know Joe well, and they're just the most delightful ray of sunshine in the world.
And I'm just thinking, like, who hates this person? No one hates this person, you know? Absolutely. And you just sort of think, like, how do they get there to believing that about themselves, do you think? Yeah.
The logic almost is like, they're an incredible person. Like, I literally can't see how someone couldn't like you, you know, or like love you.
And sometimes they can hold that as well, logically, but emotionally it doesn't fit. And so that they're, which on the flip side, I feel like they have done a lot of work and that actually is shifting, even though it can get tugged on.
It permeates so much deeper from a younger age. And we're, as human beings, looking for things within our control.
We grasp onto something that's within our control. And so as a child, if and when those needs aren't being met on top of that, with abuse happening, it automatically goes through a filter if it's something about me.
That's just what happens for children. So when it's happening, it's happening at such a young age that if it's happening developmentally at that know, between certain ages, it has nowhere else to go.

Because a child can't think, oh, this is their stuff or this is something outside of me. And so it automatically goes to like, even though they can't even name that, it automatically goes to like it's something about me.
and it starts to tug into like self-worth

or different core beliefs and that start to develop

or I'm unlovable or, you know, a lot of different deeply rooted core beliefs. This really resonated with me.
My daughter is five and every time I'm a little bit frustrated with her over something, she says, you still love me, right? It's become kind of a little in-joke with us because

I just smile and say, hmm, what do you think? And then she says, yes. And I say, of course, I love you more than anything in the world.
And we laugh and hug and the world is set to right again. But it blows me back sometimes.
Just, you know, it's the vulnerability that kids show up with, how their little brains are being wired.

And as their parents, you're doing a hell of a lot of that wiring. And Joe's brain, it was more or less wired to self-destruct.
Today, I was feeling a little bit better until I showered. But then what am I supposed to not shower, you know? So it's just just really confusing and then there is the munchausen stuff that comes in not really right now because I have been so sick but when I was starting to feel better you know looking at screens or playing a game on my phone or doing certain things I knew would make my symptoms way worse.
And there was always that urge to do those things, to make my symptoms worse, because then I could prove that I was sick if my symptoms were worse or things like that. So that I could remember that it was real and that none of this has been fake.
It's just such a hard thing to balance and to work through and figure out. And I'm really grateful.
My team knows everything. And they don't seem to judge me or think poorly of me.
But it just feels really lonely. Joe is a person who naturally draws others in, as I've seen from knowing them these past several years.
But the isolation and the exhausting business of recovering from trauma can make relationships really hard for survivors. But what Joe's story shows us is the beauty that can lay on the other side of all this hard work.
Joe gives us hope. Hey, Fidelity.
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Chips Registry, Bahamas. The challenges Joe and other survivors face in their healing can be daunting.
And certainly, professional help is one key to that. But therapy can have its own perils for Munchausen by proxy survivors, considering how uninformed most therapists are about it.
And given that many survivors have, at best, complicated relationships with their family members, peer support is key to their recovery. As Joe has come into their own, they've found some really beautiful friendships, including with their roommate, Spencer.
My name is Spencer. I use he, him pronouns.
I've known Joe. We've been close for a little over a year and we've been roommates for about six months, I think.
I've heard so much about Spencer over the past couple of years and I knew I wanted to talk to him about Joe. How did you and Joe first meet? We first met a couple years ago in eating disorder treatment very briefly.
So we kind of knew of each other for a while and then got closer through mutual friends about like a year ago. If you don't mind sharing, like specifically with both of you, because from my understanding about eating disorders, it's really like a lifelong struggle for a lot of people, right? So how do you and Joe, is that helpful that you both have that shared lens? Is that sometimes triggering? Like what is that like both having that history and living together? I think if we were in different parts of our healing, it could be really triggering.
I think luckily with where we're both at, it's not as big of a piece of our daily lives. I've never felt triggered by them.
I can't say for sure that they haven't about me. But I think for the most part with where we're at, it doesn't really come up.
But I think if we had moved in together at a different time, it could have been really messy. Yeah.
Yeah. It sounds like you guys have both kind of a lot of shared experiences, shared lenses for things.
And did you know before you had had these

conversations with Joe, did you know anything about Munchausen by proxy abuse?

No, I didn't know anything. I think before we like became close, I would see things that they

would post on Instagram or something. But no, I had never heard about it outside of them.

And what was it like? I'm always very interested to hear how people process this information the first time they hear it.

Because I think depending on what kind of lens you bring to it, but, you know, for most people, I think there's a significant amount of shock to get through when you hear one of these stories. And I wonder, what was it like for you getting to know Joe and hearing that piece of their history? I think I've gotten different, like, more and more pieces of it over time.
I think it's almost come slowly. I feel like I am still learning new aspects of things that they went through and things that are common and everything like that.
I think there's definitely, I'm trying to remember, like, hearing about it for the first time. I don't have, like, a clear memory of it, but I think initial thoughts are just that it's a lot of shock, I think, that a mother could be so abusive to their child, because that's not the narrative that is like most common, I guess.
Yeah, it really goes against a lot of what I think. And again, I think this probably depends on whatever experience someone has had with their own mother.
But I think certainly like the cultural idea of what we have around mothers, it really goes against that. And so I wonder, I know that you've, during this period of time that you've lived with Joe even, you know, they've had some health struggles and obviously for many reasons, some of them having to do with their abuse history and some of them having to do with just the garden variety problems that we all have with the medical system, right? So I know that you've been part of their support system as they were going through some things like this concussion that they got during cheerleading and then had been dealing with for the last, I I think almost, I don't know, probably the last couple of years at this point.
Um, what have you observed about how Joe goes through these health issues? I think the medicine, um, being hard from my understanding is that because it was used so often as like basically a form of poison from their mom, that it felt really life threatening to even take some Tylenol for a fever. So when we first moved in together and Joe was really sick and had a fever for multiple days, it felt life-threatening in that moment to take Tylenol to help.
So I think that's that's my understanding of why um it is it has felt so inaccessible um to kind of take care of themselves in that way and and yeah so now it's they've done

so much work that they can do it without as like I think nearly as much fear um and can

Thank you. They've done so much work that they can do it without as, like, I think nearly as much fear.

And can just take care of their body in such a, like, in such a different way, which is really cool. I wonder, you know, because it's actually pretty common for survivors to also struggle with eating disorder issues.
And I wonder if there's kind of a strong parallel there, if you observe that, of like, you sort of watch other people have this easy relationship with something like eating or taking medication for a headache. And then it's just this monumental struggle because of, you know, because of what is sort of going on internally.
Yeah, I think it was definitely something that until that situation, I had no idea. They told me that you had some health stuff that they were helping you navigate.
And if you're comfortable talking about that, I would actually love to talk about that. Because I think Joe being a part of your support system through that, I think that helped them really get some clarity.
I think that was like a healing moment for them somehow. Can you kind of talk to us about what happened there? Yeah.
I would share with them my worries and like fears about what was going on and still not having answers for a lot of things. And so I think a lot of the validating things they would say or comforting things they would say, I think they kind of realized could also be reflected onto of things that they've gone through or thinking like things that I had said to them when they had their concussion and like a weird amount of similarities there um but just kind of like being sick and not fully knowing what's going on I do remember that they they helped me get to the ER a months ago, and they were saying that that was a different experience for them than normally when the ER was involved, whether it was in the past for them or their mom or something like that.
So I think they said it felt like an exposure. So you and Joe have a third little being that is your roommate that lives with you.
Yes, Cinnamon. He is my 12-year-old rabbit.
He is about three pounds, just like a little guy that hangs out in my room. He gets along really well with Joe.
His, well, just like lately, Joe has this like penguin blanket that they wear a lot. And he really likes to like kind of half get under it and just like sit right next to them.
But yeah, the three of us have fun.

I want to stress how big these seemingly small things really are.

What all of us who've been around a person like Donna understand is the constant chaos that surrounds them.

Also, there's something about this detail with the bunny, who sadly passed away after a long life well-lived just a few months after we did this interview with Spencer. So I want to say, rest in peace, Cinnamon, and thank you for taking such good care of my friend.
The reason the detail about the rabbit hit me really hard is that my sister and I had bunnies growing up, as well as gerbils and pet mice and really just like a whole menagerie. And Megan's were always getting sick, including the dog and the cat that she had on her own when she was out of the house.
Now, I don't have any proof that she made them sick. However, mysteriously sick pets are listed specifically as a warning sign for Munchausen by proxy, according to the American Professional Society on the Abusive Children's guidelines for investigating this abuse.
So this is yet another haunting detail that will just forever be a question mark. The point is, no one under the roof of a perpetrator is ever safe.
It's only a matter of time until the next emergency. It's a horrible way to live.
We definitely were like first really becoming friends, like almost right when the concussion happened and I think that experience is so different to how they operate now um I think in that time it was so much of it was it was just like all consuming being bed bound and everything but I think they struggled so much more initially like asking for help when they had to and like asking for whether it was like my other friend's help or doctor's help or anything like that and now that's so different I think um and yeah I think I remember like when we first moved in together, they got COVID and strep and possibly a third thing that I can't remember right now. Um, and it was like a fever for days and they were not able to, um, take meds to help because of like so much fear around it.
Spencer and Joe were first becoming friends around the time that Joe got their concussion. And in that time period, it felt like Joe was getting hit with one health thing after another.
Joe, like many survivors, has a weakened immune system as a result of the abuse they suffered. So it's not uncommon for them to have one health issue kick off a host of others.
I remember talking to Joe a lot during this time and being really worried for them. I could tell how much they were doubting and questioning themselves, and it was just sending them spiraling.
But at the same time, I could tell how very much Joe wanted to be well, how much they wanted to get back to their life, even as it was a struggle to do so. I think that was also like a big learning point for me in understanding like kind of their thought process and also just other things that they've been through

from their mom and everything. But then just like a couple weeks ago, they were telling me like, oh, I had a headache and I just took some ibuprofen.
And I was like, well, it's such a big deal. So yeah, it's like so much has shifted.
And what do you think is the reason for that? I mean, And how have you seen them evolve in that particular area with dealing with things like fear around taking medications or fear around asking for help or needing to see the doctor? I think some of it is just was like being forced into those situations in a way with the concussion.

I think just because it had to happen so often, I think that played into it. But also I think they've put in like a lot of work into shifting different narratives that they hold around like themselves and all of the abuse and everything.
And I think that's impacted how they view like taking meds and reaching out to doctors

and needing to stay in bed sometimes and things like that.

It seems like kind of a culmination of things.

And I think having more resources like people to reach out to and putting, I think, a lot

of it seems like they put a lot of intentional effort to, like, have resources available to them now. I see how hard this has been for Joe, but they've come a long way in the time I've known them.
They are showing up. They are pushing back against the despair that can loom just at the edge of day-to-day life for them.
Where something as ordinary as taking a Tylenol for a headache, something most of us don't even think twice about, can feel like a battle. What encourages me the most is just hearing about the things that make Joe happy, the little normal pleasures that they were kept away from for so long.
They love Ultimate Frisbee and they play multiple times a week. I've never gone, but I know that that's like a big, exciting thing every week.

We love to play board games and stuff like with our friends and get very competitive. I know that they are just got really into cooking tofu in lots of different ways.
and I think well I guess like a really big thing would be wanting to travel and see

all of the things that there is to possibly see. So, yeah, that's probably a big, that's a big one.
For people that have a survivor in their life, like what are some things that they can do to help support that person from your perspective as someone who's been really important in supporting Joe? I think trying to listen and trying not to put my own experiences that are like vastly different onto the situation. And I think mostly just showing up.

And I think a big thing in almost any kind of support is sometimes being like, do you want me to listen or give suggestions or what's the best thing right now? I think the main thing is just trying to provide space where they can tell me things or share things if they want to. And if they don't want to, that's okay.
And then being, I don't know, just being there, I think, when things do come up. The MVP thoughts, whenever I would have a decent day, whenever I would feel decent, the MVP thoughts would come in and tell me to purposely make my symptoms worse or to do different things because of the fear that if I felt a little bit better, that I would never be able to get help for what was really going on.
And that I knew was the MVP stuff. That I was so aware of, and I was working with my therapy team on that and giving them daily updates and things like that.
I called. I got an appointment with my primary care, and I saw her, and she was the first medical professional to really listen to everything going on.
She also gave me a referral for physical therapy for the concussion. They were able to get me in the next day, which was just wild.
And when, first of all, I got there, and the doctor walked in in and the first thing he did was ask my pronouns which already just made me feel a different level of safety than I ever really feel with doctors. It felt nice to just be seen and not judged but just fully seen.
He proceeded to spend an hour with me, asking me different questions, doing, like, different testing. A lot of the MVP thoughts that I was having are, like, literally suddenly fully gone because of the fact that I was, like, fully seen.

Sometimes I worry that talking about Joe's resilience and strength, which do run deep, might paint too rosy a picture of recovery.

The reality is that many survivors don't fare anywhere near as well as Joe has in their adult life. And part of that, honestly, is just Joe, who they are as a person.
They have a light that holds back the dark. And they've also put in a ton of work, as their longtime therapist, Angela, explains.
They have worked so incredibly hard. And I honestly, like I looked at Joe today and I was like, because I still, I'm like awestruck.

What they've been through and the life and everything that they have built for themselves

is incredible because they have such a passion for other people.

And the deep level of empathy and care for other people with everything when that was so deeply missed when they were younger.

The capacity that they have for other people and the work that they've put into within their own journey and process is absolutely incredible. Next time, just as Joe gets some real distance from Donna, she finds a way back in.
My sister called and my sister never calls me. So I answered and my sister said, things are actually like not good.
I wanted to like make sure, because you know, mom, how she'll be in the hospital one day and then out the next. But she is currently in a coma and they don't think she's going to make it.
And thank you to Cadence 3 for additional recording support.