00:00:00.000Hello, hello, hello. Happy Monday, everybody. Very excited to be with you. So today I want
00:00:12.420to talk about something that makes me a little bit uncomfortable on social media, actually
00:00:18.360a lot uncomfortable on social media. And there's parts of this episode today that might be
00:00:26.480triggering for some people. We will be talking about sick kids and child abuse and chronic
00:00:34.580illnesses. And if this is something that could be upsetting to you, just please take care. Take care,
00:00:41.960okay? Most of you know that content that involves kids on social media can put me on edge. How could
00:00:51.140it not, I make this show. Last year, an acquaintance of mine from a very long time ago who was still
00:00:58.000in my social media feeds, she started posting a lot of pictures of her kid going to the hospital.
00:01:05.060Now, this kid had muscular skeletal issues, and I actually have a form of muscular dystrophy
00:01:11.160myself, so it was hard for me to look away from this feed. And I also wanted to show support
00:01:17.400for this person. That felt important to me. But as she kept posting over and over again pictures of
00:01:24.580this little child in a bed, in a hospital, wasting away, I couldn't help but think just how intimate
00:01:32.980a setting a hospital is for a family and for a child. And the photos and the videos that she
00:01:41.460kept posting really started to feel like a big invasion of privacy. Just to post so much about
00:01:48.460a kid's medical diagnosis and pictures of them hooked up to tubes and wires and laying unconscious
00:01:54.920in a hospital bed, it got to the point where I had to mute this person. I get served a lot of
00:02:04.460pictures of sick kids on Instagram. Other parents out there have told me they do, too. This is a
00:02:13.180part of social media that I've only recently started looking into. The journalist Fortessa
00:02:20.460Latifi, she's really awesome, by the way, and she's going to be on this show soon. She recently wrote
00:02:26.100a story for the Washington Post about hashtag medical moms. As she says in her story, hashtag
00:02:33.380Medical Moms, are a corner of TikTok, also Instagram, where mothers of chronically ill
00:02:40.640and disabled children share their parenthood journeys. She writes that you might see a child
00:02:47.080with cystic fibrosis struggling to breathe, a premature baby getting their tracheotomy changed,
00:02:53.380or a mother even dancing to a trending song while she explains her child's disability.
00:03:00.780fortessa interviewed one chronically ill tiktok creator who was also chronically ill as a child
00:03:10.200and their parent posted a lot of medical information about them including photos of
00:03:16.540them in a neck brace following a car accident descriptions of them in preparation for an
00:03:22.440upcoming colonoscopy and cam now that they are grown up and a fully cognizant human in the world
00:03:29.300says that this was invasive, and it was also disturbing for them.
00:03:36.040Now, there are a lot of reasons that moms post pictures of their kids when they're sick
00:03:40.940or in the hospital. And look, I get it. I do get it. Some are trying to raise attention for a
00:03:48.900little known illness. Others are trying to raise money because our medical and insurance systems
00:03:53.760suck. They're completely broken. And that is fair. But there are also very good reasons for not0.96
00:04:01.400posting pictures of sick kids in hospitals. And I recently learned of a really, really messed up
00:04:07.820one from my friend, the author and podcaster Andrea Dunlop. Andrea is the creator of the
00:04:13.900podcast Nobody Should Believe Me. And she told me a story that scared the bejesus out of me.
00:04:19.260She 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.
00:04:38.840You'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.
00:04:49.260And 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.
00:05:03.200And 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.
00:05:16.740So that is, you know, as we as you always talk about, like those pictures go out into the world and they are not under your control anymore.
00:05:23.540You know, there 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.
00:05:38.180And she had this story where the mom was pregnant and she was in a car crash and then she died and the baby lived.
00:05:46.760And she had this son, this other son, Eli, who then had cancer.
00:05:51.900And 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.
00:06:04.700But but yeah, so I mean, this is 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.
00:09:59.420as all forms of abuse have since time immemorial.
00:10:02.520In terms of people who have the disorder,
00:10:05.480The 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?
00:10:19.460In 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?
00:10:26.300So if someone was doing this behavior for a long time, you know, people would catch up, right?
00:10:32.160People, you could only sort of burn through so many people.
00:10:34.640you could only sort of go to so many different medical institutions before, you know, possibly
00:10:39.440people were onto you. And now the number of people you can go to for that attention, right, which is
00:10:46.660the reward in this case, is infinite. I mean, you can find people all over the world. You can join
00:10:53.740support groups for the disease your child allegedly has. You can, you know, fundraise on
00:10:59.860all of these sites like GoFundMe and you can just access so much more attention. And I think that's
00:11:06.900why it's so relevant to what you talk about on your show is because, you know, we talk about
00:11:11.460that online attention. It feels very good to all of us, right? That's a very human thing. And so I
00:11:17.180think that that has just supercharged this abuse. And certainly all of the experts that I've talked
00:11:22.940to feel that that's the case. This abuse is characterized by intentional deception.
00:11:26.760Right. 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?
00:11:40.360So 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.
00:11:53.360And 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.
00:12:11.340I 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.
00:12:37.920if 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.
00:12:46.240That's obviously, you know, one way that I know people use social media to just keep people updated in those situations.
00:12:52.320And obviously, also, unfortunately, there is a huge failure in our health care system in that many people have to go on and fundraise to, you know, to cover their medical expenses.
00:13:04.520But 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 in the space of people having sick kids, right, where that's just something that these are things that pull on our heartstrings.
00:13:20.100These are things that have a huge 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.
00:13:43.240In 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?
00:13:54.440I've noticed it. I see whenever I see sick children in my feed and I see parents posting about sick children, the likes are outrageous.
00:14:10.760And I will tell you, some of these pictures are very difficult to look away from.
00:14:15.700I'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.
00:14:30.420And that feels it disturbs me that that part of this disturbs me.
00:14:35.700Yeah, 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?
00:14:57.060And so, I mean, I personally cannot cannot look at those those posts.
00:15:01.980And with the recognition that probably what I'm looking 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.
00:15:19.100But I mean, it of course, always for me is just to be to be totally frank, it's it's pretty triggering for me.
00:15:26.580But 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 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 hooked up to tubes in medical situations.
00:15:51.660And these are, you know, that was the right word. They're very intimate. You know, often children are in various states of undress.
00:15:58.800Talk 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 can you run through the Belle Gibson case for me?
00:16:11.580Oh, yes. Belle Gibson. I think she's easily sort of the most famous case of this. So she was an Australian influencer and blogger who claimed that she had beaten brain cancer despite being told that she had four months to live right after she was diagnosed when she turned 20.
00:16:34.320this was her story, and that she beat brain cancer with her diet. And so she launched this
00:16:41.500blog, The Whole Pantry, and she had an app and she had like a cookbook deal. And she had, you know,
00:16:48.700it was this story of like, it was a really like, you know, horrible sort of crossover with some of
00:16:53.780the kind of wellness stuff that goes on that's very questionable in terms of like, I, you know,
00:16:59.640stopped eating gluten and it cured my cancer, that kind of thing. And so, you know, she said things
00:17:03.820like, oh, I, you know, started this diet and then I quit chemo and radio, you know, and radiotherapy
00:17:10.320and, you know, and this diet was all it took to just, you know, to detox my body. And it was this,
00:17:17.400you know, it was like a pretty, pretty sort of mashup of all these fad diets. So it was gluten0.95
00:17:21.780free and no soy and no dairy and sugar and superfoods and gut detoxifying and plant-based
00:17:27.480and kind of like a lot of the stuff that we hear in the wellness industry. And she had over 200,0000.99
00:17:32.940social media followers, which this was this was several years ago. So I think that's sort of even
00:17:36.580sort of a bigger number. It's almost like you have I feel like when we're talking about social
00:17:39.560media numbers, there's almost like an inflation thing where you're like 200,000 back then would
00:17:43.380be like a million now. And a lot of her followers were women who were struggling with chronic
00:17:48.960illness. And some of them, you know, I think that the sort of worst outcomes is that some of them
00:17:54.100got rid of their legitimate cancer treatments and followed her advice instead. And so you're
00:18:00.420talking about a really vulnerable population that made these claims because they believed
00:18:05.540that this diet had cured her cancer. And of course, you know, lo and behold, they, you
00:18:12.680know, it came out that none of this was true. And the thing that brought her down actually
00:18:17.180was that she had, she claimed to have made a six-figure donation to a charity that never
00:18:24.040Talk to me a little bit about the pregnancy scammer case.1.00
00:18:28.660So 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, you know, there was all of these horrific details to go along with it.1.00
00:18:55.700So 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.
00:19:04.220And that's where the pregnancy came from.
00:19:05.960And, you know, she was having all of these issues.
00:19:09.980Some of them only talked to her over the phone or sort of online.
00:19:13.860And 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.
00:19:21.280And then she said, you know, and one that her friend who was with her was going into early labor. So, I mean, he's 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.
00:19:37.980Because it's 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.
00:19:51.440How can just the average consumer of social media content consume images of illness on Instagram and on TikTok?
00:20:05.760I 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 when there are a lot of people out there, sadly, trying to get attention for false illness narratives online.
00:20:27.440Yeah. 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.
00:20:45.880But I think, you know, I think a couple of things to look out for. And again, these cases are characterized by intentional deception. Right. So, you know, there can be a lot of other things that that go on that can look red flaggy that might not. Right.
00:21:02.720So some people are just, and some mothers included, right, or parents included, some people are just very dramatic and some people are oversharers on social media and do not have great boundaries about the content they share.
00:21:19.000That might just be, that's all that's going on there, right?
00:21:23.620If 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.
00:21:36.400And I'm not talking about mild exaggeration.
00:21:38.820I'm not talking about like, oh, you know, 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.
00:21:47.940And that's just like not that big, like, you know, whatever.
00:21:49.920Or, 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.
00:21:56.840Like, that's not what I'm talking about.
00:21:58.640But 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.
00:22:07.880For instance, one of the most common things that we see in these cases is feeding issues, especially in young children, right?
00:22:17.440And, I mean, this is, like, a huge thing that comes up in these cases.
00:22:19.500And then they have these eating issues that just don't resolve the way that most preemie babies eating issues, fortunately, do resolve.
00:22:26.880So they have, you know, feeding tube first in their nose and then they have a surgically implanted one.
00:22:32.760And you see that kind of escalation of treatments.
00:22:37.340And 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.
00:22:49.160and then they'll see that child just like eat a piece of pizza normal. So like that kind of thing
00:22:55.340where you're seeing those like really dramatic inconsistencies or like, you know, the other one
00:22:59.380that comes up is like a lot in these cases is breathing and respiratory issues, right? So it's
00:23:03.540always stuff that, again, there is no sort of a definitive diagnostic test for. And they'll say,
00:23:09.780oh my God, my child has such severe asthma that they're, you know, can barely, you know, get
00:23:14.700through the day. And then you see that child just like playing sports and being normal and running
00:23:18.580around. And I think for a lot of people and in a way I hear from so many people where they have
00:23:26.920listened to the show and they're sort of able to name what they were feeling about someone in their
00:23:32.400life. And then, you know, then, of course, we always encourage people to report if they really
00:23:36.700have, you know, a suspicion that that abuse is happening. That is that is on all of us. Right.
00:23:41.140As a community. And, you know, it's sort of like they had a bad gut feeling that something was off
00:23:47.100And 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 take a turn for the worse.
00:24:08.560it's always like they're always making their child's health sound worse than it is. And that
00:24:14.220is, you know, that's another sort of red flag. And and yeah, so I think those are the things to look
00:24:19.660out for. You know, it's really hard if you're just following someone online because you have no idea
00:24:24.620what the truth is, you know, and there are, you know, some people that are on TikTok and they
00:24:30.720look like they have all the medical paraphernalia and then, you know, they look sick and it can be
00:24:36.620very convincing. You know, these folks will go to really great lengths to make this look very
00:24:43.400convincing. And so I think that in some ways there's sort of no way to know. But I think you
00:24:50.960can also like, you know, one of the ways that this family we were talking about, this Emily Durr
00:24:54.340person came out was, you know, people just sort of started cross-referencing, right? They
00:24:58.220Googled, they got suspicious and they Google imaged some of the photos that she was using
00:25:02.780and realized that that was not the person that she was talking about. It was some other lady and
00:25:06.540you know, who lived some completely other place. And and so I think if you are, you know, if you
00:25:11.420are just following someone online and you are, you know, wanting to support that person in their
00:25:17.220journey and, you know, possibly even donating money or resources to them, if you start to get
00:25:21.760suspicious, usually a little online sleuthing will uncover a lot. Right. And I think a lot of people
00:25:29.160sort of know how to do that now. And so I think just just doing a little fact checking can often
00:25:34.680can help. So I think if you are going to follow someone online and you're wanting to be supportive
00:25:40.720in that, again, that can be a really positive thing, right? I never want to take that away
00:25:43.820from people because I know that illness can be isolating. Having a child with an illness can
00:25:48.140obviously be extremely isolating. But I think if you just suspect something is up, then a little
00:25:51.960fact checking can go a long way. Are you able to just scroll social media and not see one of these
00:26:01.420pictures and and as you said be completely completely triggered like is your mind just
00:26:06.940constantly going through all of the possibilities because that must be really hard there are two
00:26:13.120things that like pictures of sick kids and um especially if they're like in a hospital setting
00:26:20.120and pictures of pregnancy loss um you know i had an influencer who i followed and she posted a
00:26:26.900picture of herself in the hospital, you know, with her husband and baby after a pregnancy loss.
00:26:32.000And again, that I am not here to say that that was not her right to post it. But I had to unfollow
00:26:38.220her for a while just for my own mental health. And I do not think she was in any way fabricating
00:26:43.280any of that. I have zero suspicions about that person. But just, yeah, I mean, for me, that
00:26:47.780content is so, yeah, it's really, it hits me on a pretty visceral level. So I do try and sort of
00:26:54.420avoid that. And, you know, I also because of the podcast and the book that I'm that I'm writing on
00:26:58.880this topic, I mean, I spend a lot of time with this content. I spend a lot of time reading through
00:27:04.300documentations and, you know, mostly not looking through photos, but sometimes. And so I sort of
00:27:09.900also have to just like be aware of my threshold for it. And when I'm on social media in general,
00:27:14.760especially on TikTok, like TikTok is my absolute just for fun platform. Like I occasionally like
00:27:20.620post a silly video with like a filter, one of the filters, you know, or something. But like,
00:27:25.180I don't even like promote my work really on that platform. I just go to like watch fun things.
00:27:29.620Why do you think that people posting pictures of sick children, of children with chronic illnesses
00:27:36.300on social media, why do they get so much attention? Is it the Instagram TikTok algorithm?
00:27:43.440Is it because they're tugging at our heartstrings? Is it a combination of both?
00:27:49.000I mean, I think it's 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 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.
00:28:10.280Right. 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. 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.
00:28:34.520Right. 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.
00:28:45.000And so I think it's just I don't think there's anything that has the emotional impact of a sick or dying child.
00:28:56.040I 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.
00:29:14.280And so I think it just it's a 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 don't I don't want to be suspicious of people that have, you know, sick children.
00:29:32.220And that's 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.
00:29:53.220Yeah. Yep. Tell everyone where we can find you and when we can listen to the third season of your podcast.
00:30:02.220Yes, 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.
00:30:16.760The new episodes will start airing next Thursday, September 20.
00:30:23.440So, yeah, you can you can join us there.
00:30:26.300And in terms of where else to find me, I am very on Instagram.
00:30:29.880So I am I am on there a lot and you can talk to me there.
00:30:43.720Andrea forgot to tell you where to find her on the gram.
00:30:46.200but she is at Andrea Dunlop. We covered a lot today, friends, and it got dark. I'm sorry
00:30:55.800about that. I think that we should do something more fun next week. Clown influencers, maybe.
00:31:04.380No, no. That would be creepy. I hate clowns. That would freak me out. I will do it eventually,0.98
00:31:09.460but maybe not next week. Next week, let's like ice cream and fucking unicorn influencers. I don't0.99
00:31:15.000know. I don't know. Have a good one. Smooches. Talk to you soon.