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Hi, it's Andrea. We are taking a little break today to bring you an interview that I did with a fantastic podcaster friend of mine, Joe Piazza. But before we get into that, I want to give you a note about what is coming for the rest of our season. So this has been a crazy season. We've been covering a trial that's happening in real time.
And we had a couple of episodes with folks that had to reschedule. So we're going to be bringing you those later on. These are our episodes covering the situation in Lehigh, Pennsylvania, and the story of the wrongly accused mom. We are still going to be bringing you those stories. Probably
probably between seasons, but those will be coming next year. So as to what's coming the rest of this season, we're going to have several more episodes for you. We are back on the Maya Kowalski case because as it turns out, this situation appears to be very far from over. And I'm
I cannot wait to bring you these episodes. I got the interview that I most wanted for this season and thought there was no way I was going to get it. And we got it. So I'm very excited to share that with you.
In the meantime, please enjoy this episode of Under the Influence, which is a podcast by my brilliant friend, Joe Piazza, all about women and the internet and specifically social media. So Joe is the author of a whole bunch of books. We've known each other for years. We've
We've been wanting to do this collaboration for years, so I'm excited to bring it to you. She has a new novel coming out that I highly recommend called Sicilian Inheritance. It comes out April 2nd of next year and will include a link to pre-order. It is a really fun book about a woman who goes on an adventure to uncover some family secrets in Italy and just pre-order.
really the kind of thing that I am in the mood to read right now. I hope you enjoyed Jo's podcast. Go check out the rest of her episodes. And she actually has done several other episodes on specifically the topic of medical influencers. So I highly recommend those as well. And we will be back next week with a new episode of this season.
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Hello, hello, hello! Happy Monday, everybody! I'm very excited to be with you. So today I want to talk about something that makes me a little bit uncomfortable.
on social media. Actually, a lot uncomfortable on social media. And there's parts of this episode today that might be triggering for some people. We will be talking about sick kids and child abuse and chronic illnesses. And if this is something that could be upsetting to you, just please take care. Take care, okay?
Most of you know that content that involves kids on social media can put me on edge. How could it not? I make this show. Last year, an acquaintance of mine from a very long time ago who was still in my social media feeds, she started posting a lot of pictures of her kid going to the hospital.
Now, this kid had muscular skeletal issues, and I actually have a form of muscular dystrophy myself, so it was hard for me to look away from this feed. And I also wanted to show support for this person. That felt important to me. But as she kept posting over and over again pictures of this little child,
In a bed, in a hospital, wasting away, I couldn't help but think just how intimate a setting a hospital is for a family and for a child. And
The photos and the videos that she kept posting really started to feel like a big invasion of privacy. Just to post so much about a kid's medical diagnosis and pictures of them hooked up to tubes and wires and laying unconscious in a hospital bed, it got to the point where I had to mute this person.
I get served a lot of pictures of sick kids on Instagram. Other parents out there have told me they do too. This is a part of social media that I've only recently started looking into. The journalist for Tessa Latifi, she's really awesome, by the way, and she's going to be on this show soon. She recently wrote a story for the Washington Post about hashtag medical moms.
As she says in her story, hashtag medical moms are a corner of TikTok, also Instagram, where mothers of chronically ill and disabled children share their parenthood journeys. She writes, you might see a child with cystic fibrosis struggling to breathe, a premature baby getting their tracheotomy changed.
or a mother even dancing to a trending song while she explains her child's disability.
Fortessa interviewed one chronically ill TikTok creator who was also chronically ill as a child, and their parent posted a lot of medical information about them, including photos of them in a neck brace following a car accident, descriptions of them in preparation for an upcoming colonoscopy, and cam now that they are grown up and a fully cognizant human in the world.
says that this was invasive and it was also disturbing for them. Now, there are a lot of reasons that moms post pictures of their kids when they're sick or in the hospital. And look, I get it. I do get it. Some are trying to raise attention for a little known illness. Others are trying to raise money because our medical and insurance systems suck. They're completely broken. And that is fair.
But there are also very good reasons for not posting pictures of sick kids in hospitals. And I recently learned of a really, really messed up one from my friend, the author and podcaster, Andrea Dunlop. Andrea is the creator of the podcast, Nobody Should Believe Me. And she told me a story that scared the bejesus out of me.
She told me that there are people out there who want attention so bad that they will actually steal pictures of sick kids that other parents have posted on social media and then pretend that these are their own sick kids to get attention. You've talked in previous episodes about people who
you know, pretend to have a family that they don't have and they use other people's photos to do that. And so when people are posting photos of their kids online, which honestly I stopped doing after listening to the first season of your podcast, but when people are posting pictures of their kids online, they should be aware that that is a risk. And when they are posting pictures of their kids in the hospital, they should also be aware that that is a risk that someone is going to steal
that content and pretend that that is their sick child and use it to get attention and possibly also fundraise. So that is, you know, as you always talk about, like those pictures go out into the world and they are not under your control anymore. You know, there was a case of this woman, Emily Durr, who had an entire 10-year-long history where she built out the story of this family and
used, you know, used this family's photos. And she had this story where the mom was pregnant and she was in a car crash and then she died and the baby lived. And she had this son, this other son, Eli, who then had cancer. And so it was this warrior Eli page where she was, you know, fundraising. And it turned out to all be, you know,
photos that she'd taken from the internet and she had been keeping it going for a really long time. But yeah, so I mean, this is one where it's just, you just are sort of so horrified to think about someone who's going through and finding these photos of sick children and then presenting them with this false narrative. That's terrifying, right? Terrifying. We are going to be doing...
Another whole episode on medical influencing medical moms on Instagram and TikTok. There's a lot to unpack here. There is. But when I started talking to Andrea Dunlop about this phenomenon of posting sick kids, we also got talking about her podcast. Her podcast is Nobody Should Believe Me, and it focuses on Munchausen by proxy, which
Munchausen by proxy is a type of child abuse where a caregiver pretends that a child is ill in order to get attention for themselves. Now, Andrea, this has touched her very, very personally. Her own sister was actually investigated for Munchausen by proxy abuse more than a decade ago, and it tore her family apart.
It's part of the reason that she created her podcast, Nobody Should Believe Me. And in her deep dive into the subject, Andrea uncovered a lot of information about Munchausen by internet.
This is where people pretend to be ill on social media to get attention or to raise money. They pretend to be sick themselves. Some women pretend to have a sick child. There have also been cases of women pretending to be pregnant in order to get attention or to raise money.
Now again, the majority of people who post about these kinds of topics are not deceiving anyone, but there is a corner of the world where they are. And so that's why we should be talking about this.
It's also why I called Andrea up to just give me a rundown on what Munchausen by internet is, whether or not social media is making it worse, and how normal consumers of social media can look out for these things, can look out for signs that they may be being deceived by someone who's posting these things just to get attention.
Hi. Hi, Jo. I really need you as someone who has been reporting on this and who also has lived experience in this world to explain to me exactly what Munchausen by proxy is. Yes. So we use the term Munchausen by proxy. It is somewhat generic.
somewhat of a colloquial term, and it's used to describe two sort of more official things, right? So one is the act of medical child abuse, and that is when a parent or caregiver, usually a mother, like 96% of cases are mothers, exaggerates, feigns, or induces illness in their child and causes harm to the child by doing so.
Other thing we use Munchausen by proxy to describe, and you'll hear people say that someone has Munchausen by proxy or suffers from Munchausen by proxy, is a mental disorder called factitious disorder imposed on another. And that is when someone commits medical child abuse for the purpose of sympathy and attention. How do you think that the internet and social media have changed the presentation of these kinds of Munchausen by proxy cases?
Unfortunately, I think they have thrown fuel onto the fire of something that surely existed long before this. You know, the Munchausen by proxy, that term came about in 1970s, but I sort of suspect that this abuse has been with us probably forever.
as all forms of abuse have since time immemorial. In terms of people who have the disorder, the presence of social media, I mean, it just cannot be overstated how much worse this makes everything because it used to be that our communities really existed in the real world, right? In the physical world, I mean, I would argue that online is the real world, but they existed in the physical world where they had those limitations, right? So if someone was
doing this behavior for a long time, you know, people would catch on, right? People, you could only sort of burn through so many people. You could only sort of go to so many different medical institutions before, you know, possibly people were onto you. And now the number of people you can go to for that attention, right, which is the, which is the reward in this case is infinite. I mean, you can, you can find people all over the world. You can join,
support groups for the disease your child allegedly has. You can, you know, fundraise on all of these sites like GoFundMe and you can just access so much more attention. And I think that's why it's so relevant to what you talk about on your show is because, you know, we talk about that online attention. It feels very good to all of us, right? That's a very human thing. And so I think that that has just supercharged this abuse and certainly all of the
experts that I've talked to feel that that's the case. This abuse is characterized by intentional deception. Right. And one of the things that I was shocked to learn from you is that there is a group known as, quote, illness influencers. What does that mean? So this is, you know, a group of people and it's a lot of I see a lot of this content on TikTok and it's a group of really just people who are
documenting their journey through an illness. And I always want to say that this behavior in and of itself is not necessarily suspicious, right? People use, you know, for all of the ways that this, you know, the ability to connect with other people in social media and online communities have exacerbated
this abuse, I mean, it's also been a complete godsend for people who are actually struggling with a disease, who are actually have, you know, in the position where they have sick children because they can connect with other people and they can get that support and they're less isolated with it. Right. So it's not in and of itself. It's not a bad thing. Right. And so there is not anything wrong, you know,
by itself with people documenting their illness journey, if that's a way for them to, you know, share with friends and family that, you know, what's going on so that they don't have to make 8 billion phone calls. That's obviously, you know, one way that I know people use social media to just keep people updated in those situations. And obviously, also, unfortunately, there is a huge failure in our healthcare system in that many people have to go on and fundraise to, you
you know, to cover their medical expenses. But I think that that's, you know, that that's
It's a way to get attention. It's certainly something that catches people's attention. And then you also see that, you know, in the space of people having sick kids, right? Where that's just something that these are things that pull on our heartstrings. These are things that have a huge emotional, visceral emotional impact. And so anything that has that, you know, as a very online person, that anything that really pulls at our heartstrings and really gets that emotional response is going to get the most
attention online, right? And so it becomes this sort of, it can become sort of a competitive sport. In your experience, have you noticed that parents of ill children, the ones that do become influencers, that they do get a lot of attention for their posts? I've noticed it. I see a
Whenever I see sick children in my feed and I see parents posting about sick children, the likes are outrageous. The numbers are so...
And I will tell you, some of these pictures are very difficult to look away from. I've seen pictures that feel so intimate of children going into surgery and children hooked up to all kinds of medical equipment that clearly they don't they have not consented that their parents share. And that feels it disturbs me that that part of this disturbs me.
Yeah, I absolutely agree with you. And I do know, you know, just from sort of looking at numbers and research on it and talking to other people who do engage with that content, that those posts get very popular and they can get a lot of attention, which is why, you know, which is why when people are abusers, that's what they're using, right? And so, I mean, I personally cannot...
cannot look at those posts. And with the recognition that probably what I'm looking at is not someone who's an abuser, it probably is more likely to be someone that, you know, has legitimately sick child and just maybe isn't thinking through
the fact that that could be pretty invasive to post a picture of your child in the hospital. But I mean, it of course always for me is just to be to be totally frank, it's it's pretty triggering for me. But yeah, I mean, I think I think there's sort of two takeaways here, right? Like that. Number one, this is something that abusers do. Right. And Dr. Mark Feldman, who's one of the top experts in this disorder in the world, calls it medical porn. And I think that's the right term.
terminology when you're talking about someone who is an abuser using it, right? It's just really they post so many photos of their children and
hooked up to tubes in medical situations. And these are, you know, that was the right word. They're very intimate. You know, often children are in various states of undress. Talk to me about a few famous cases. There's one big influencer that a lot of people have written to me about, Belle Gibson. Can you run through the Belle Gibson case for me?
Oh, yes. Belle Gibson. I think she's easily sort of the most famous case of this. So she is in she was an Australian influencer and blogger who claimed that she had a
beaten brain cancer despite being told that she had four months to live right after she was diagnosed when she turned 20. This was her story. And that she beat brain cancer with her diet. And so she launched this blog, The Whole Pantry, and she had an app and she had like a cookbook deal. And she had, you know, it was this story of like, it was a really like, you know, horrible sort of crossover with some of the kind of
wellness stuff that goes on that's very questionable in terms of like, I, you know, stopped eating gluten and it cured my cancer, that kind of thing. And so, you know, she said things like, oh, I, you know, started this diet and then I quit chemo and radio, you know, and radiotherapy and, you know, and this diet was all it took to just, you know, to detox my body. And it was this, you know, it was like a pretty, pretty sort of
mashup of all these fad diets. So it was gluten-free and no soy and no dairy and sugar and superfoods and gut detoxifying and plant-based and kind of like a lot of the stuff that we hear in the wellness industry. And she had over 200,000 social media followers, which this was several years ago. So I think that's sort of even sort of a bigger number. It's almost like you have, I feel like when we're talking about social media numbers, there's almost like an inflation thing where you're like 200,000 back then would be like a million now. Yeah.
And a lot of her followers were women who were struggling with chronic illness. And some of them, you know, I think that the sort of worse outcomes is that some of them got rid of their legitimate cancer treatments and followed her advice instead. And so you're talking about a really vulnerable population that made these claims because they believed that this diet had cured her cancer. And of course,
You know, lo and behold, they, you know, it came out that none of this was true. And the thing that brought her down actually was that she had she claimed to have made a six figure donation to a charity that never materialized. Talk to me a little bit about the pregnancy scammer case.
So this is a woman who basically scammed a bunch of doulas into thinking that she was pregnant. So the woman's name is Caitlin Braun, and she roped a bunch of doulas into this story that she had a pregnancy and everything.
You know, there was all of these horrific details to go along with it. So she was, you know, in a bunch of the versions of the story. There's many different versions of the story, but in a bunch of them, you know, she was a victim of rape. And that's where the pregnancy came from. And, you know, she was having all of these issues. Some of them did see her in person. Some of them only talked to her over the phone or sort of online.
And it was just, you know, these escalating situations where then she lost the baby and she was narrating a stillbirth to the doula on the other line. And then she said, you know, in one that her...
friend who was with her was going into early labor. So, I mean, these just extremely kind of over the top, really horrifying stories. And so it's really just sort of especially horrific that this is the people that this woman was taking advantage of, right? Because it's very hard on anybody who is in a role like that or any kind of medical provider because their job is so dependent on them being able to trust that their patient is telling them the truth. How
can just the average consumer of social media content consume images of illness on Instagram and on TikTok? What should we be looking out for? I don't think that we should constantly be convinced that everyone is trying to pull the wool over our eyes, right? But I think there has to be a healthy dose of skepticism around
when there are a lot of people out there, sadly, trying to get attention for false illness narratives online.
Yeah. And I mean, boy, it's complicated. I mean, yes, I don't think everyone should look at even the majority of this content with the idea that there is an abuser behind it. I think that that's a horrible way to look at things. Unfortunately, I think for some of us, that is sort of our visceral experience. But I think, you know, I think a couple of things to look out for. And again, that these cases are characterized by intentional deception, right? So
You know, there can be a lot of other things that go on that can look red flaggy that might not. Right. So some people are just and some mothers included. Right. Or parents included. Some people are just very dramatic and some people are over shares on social media and do not have great boundaries about the content they share. That might just be that's all that's going on there. Right. That person just is over sharing.
if you know someone in real life and you notice their online activity and that they're posting a lot about their kids being sick in particular, you know, just keeping an eye out for those inconsistencies. And I'm not talking about mild exaggeration. I'm not talking about like, oh, you know, the
this mom is really making a big deal of the fact that she was at the ER for two hours with her kid with a fever and that's just like not that big, like, you know, whatever. Like that's something that sort of is a normal parenting experience that someone might couch as like a very extreme thing because it felt that way to them and that's legitimate. Like that's not what I'm talking about. But if someone is saying, you know, that their kid has...
all of these issues and you are actually around that child and you do not see those issues. For instance, one of the most common things that we see in these cases is feeding issues, especially in young children, right? So the child is born premature and this is like a huge thing that comes up in these cases. And then they have these eating issues that just don't resolve the way that most preemie babies eating issues fortunately do resolve. So they have a
you know, feeding tube first in their nose and then they have a surgically implanted one. And you see that kind of escalation of treatments. And then what friends and family or teachers or people who are around that child will notice is like, well, that child allegedly can't eat because of reflux or whatever issues the parent is claiming. And then they'll see that child just like eat a piece of pizza normal.
So, like, that kind of thing where you're seeing those, like, really dramatic inconsistencies or, like, you know, the other one that comes up is, like, a lot in these cases is breathing and respiratory issues, right? So it's always stuff that, again, there is no sort of
a definitive diagnostic test for. And they'll say, oh my God, my child has such severe asthma that they're, you know, can barely, you know, get through the day. And then you see that child just like playing sports and being normal and running around. And I think for a lot of people, and in a way I hear from so many people,
where they have listened to the show and they're sort of able to name what they were feeling about someone in their life. And then, you know, then, of course, we always encourage people to report if they really have, you know, a suspicion that that abuse is happening. That is that is on all of us. Right. As a community. And, you
you know, it's sort of like they had a bad gut feeling that something was off and then they heard sort of these exact things that happened so much in these cases and they realized like what they were looking at. And so I think, and it's always going one way, right? I think that's the other thing that is sort of a pattern of this abuse is like the child may have like a miraculous recovery for a time or a miraculous remission for a time, but then they
They take a turn for the worse. It's always like they're always making their child's health sound worse than it is. And that is, you know, that's another sort of red flag. And yeah, so I think those are the things to look out for. You know, it's really hard if you're just following someone online.
because you have no idea what the truth is, you know, and there are, you know, some people that are on TikTok and they look like they have all the medical paraphernalia and then, you know, they look sick and it can be very convincing. You know, these folks will go to really great lengths to make this look very convincing. And so I think that in some ways there's
There's sort of no way to know. But I think you can also like, you know, one of the ways that this family we were talking about, this Emily Durr person came out was, you know, people just sort of started cross-referencing, right? They Googled, they got suspicious and they Google imaged some of the photos that she was using and realized that that was not the person that she was talking about. It was some other lady and, you know, who lived some completely other place. And so I think if you are, you know, if you are just following someone online and you are
you know, wanting to support that person in their journey and, you know, possibly even donating money or resources to them. If you start to get suspicious, usually a little online sleuthing will
uncover a lot, right? And I think a lot of people sort of know how to do that now. And so I think just doing a little fact-checking can often help. So I think if you are going to follow someone online and you're, you know, wanting to be supportive, and again, that can be a really positive thing, right? I never want to take that away from people because I know that illness can be isolating. Having a child with an illness can obviously be extremely isolating. But I think if you just suspect something is up, then a little fact-checking can go a long way.
Are you able to just scroll social media and not see one of these pictures and, as you said, be completely triggered? Is your mind just constantly going through all of the possibilities? Because that must be really hard. There are two things that, like pictures of sick kids, and especially if they're in a hospital setting, and pictures of pregnancy loss. I had an influencer who I
followed and she posted a picture of herself in the hospital, you know, with her husband and baby after a pregnancy loss. And it again,
I am not here to say that that was not her right to post it, but I had to unfollow her for a while just for my own mental health. And I do not think she was in any way fabricating any of that. I have zero suspicions about that person. But just, yeah, I mean, for me, that content is so, yeah, it's really, it hits me on a pretty visceral level. So I do try and sort of avoid that. And, you know, I also, because of the podcast and the book that I'm writing on this topic, I mean, I spend a lot of time
With this content, I spend a lot of time reading through documentations and, you know, mostly not looking through photos, but sometimes. And so I sort of also have to just like be aware of my threshold for it. And when I'm on social media in general, especially on TikTok, like TikTok is my absolute just for fun.
Like I occasionally like post a silly video with like a filter, one of the filters, you know, or something. But like I don't even like promote my work really on that platform. I just go to like watch fun things. Why do you think that people posting pictures of sick children, of children with chronic illnesses on social media, why do they get so much attention? Is it the Instagram, TikTok algorithm? Is it digital?
Because they're tugging at our heartstrings. Is it a combination of both?
I mean, I think it's probably a combination of both. I mean, listen, I am not a tech person, but I do seem to think, and you probably know more about this, but I feel like whenever you have like Instagram or these other platforms seem to know when you have like a big life event versus just like a post about something else, right? If you're like, I got married or I got a book deal or whatever. And so I think like that that may be part of it, the algorithm, right? Yeah.
Again, that's just it. That's speculation on my part. I mean, I think the bigger thing is like, you know, sick kids, they really get at something for all of us that it's both the most sympathetic and the most horrifying thing you can possibly see. Right. Like it feels...
so viscerally wrong for a child to be sick. And of course, it's the most heartbreaking thing we can possibly imagine. And so I think it's just, I don't think there's anything that has...
the emotional impact of a sick or dying child. I just think that is, you know, and certainly for parents, like, I think that is part of becoming a mother for me was like, oh, I have a new worst fear. There is a whole new worst case scenario in my life that like did not exist before. And it is that my child, something bad will happen to my child. And so I think it's just, it's so visceral. And I think that it,
it makes me so upset that people exploit that, right? Because we want to be able to be sympathetic and I don't want to be suspicious of people that have, you know, sick children. And that's horrible, right? And you want those people to be able to have that support and to be able to go into online communities without being afraid that they're going to be infiltrated by an abuser. And, you know, it's just, but I just think those, I just think it really,
I think it's one of the most visceral, instinctive things you can see is a picture of a sick child. Yeah. Tell everyone where we can find you and when we can listen to the third season of your podcast.
Yes, thank you so much. So my podcast is Nobody Should Believe Me, and that can be found anywhere you listen to podcasts. The first two seasons are out now, so you can go and listen to those. I certainly think it would help to understand kind of what we're talking about in the third season. The new episodes will start airing next Thursday, September 20. So yeah, you can join us there. And in terms of where else to find me, I am very on Instagram, so I am on
on there a lot and you can talk to me there. Andrea forgot to tell you where to find her on the gram, but she is at Andrea Dunlop. We covered a lot today, friends, and it got dark. I'm sorry about that. I think that we should do something more fun next week. Clown influencers, maybe.
No, no, that would be creepy. I hate clowns. That would, that would freak me out. I will do it eventually, but maybe not next week. Next week, let's like ice cream and fucking unicorn influencers. I don't know. I don't know. Have a good one. Smooches. Talk to you soon.
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