Truth Bombs & Backlash with Kate Colbert (Ep 159)

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Kate Colbert: [00:00:00] You said something to me once that I think is really important, and you said if you've seen one EDS patient, you've seen one EDS patient, right? Mm-hmm. Meaning that for all the ways in which we have similarities and therefore can sort of fit into some diagnostic criteria, we're all really, really different.

Dr. Linda Bluestein: Welcome back to the most popular EDS podcast, bendy Bodies. I'm your host and founder, Dr. Linda Bluestein, the Hypermobility md. We have so much in store for you today. I can't wait for you to hear it. This is the first episode of season six, so I hope that you enjoyed season five and even more so. I hope that you're gonna enjoy the amazing guest that we're having on season six.

I also want to share a fabulous new resource, my substack newsletter, the Bendy Bulletin. The team has been putting a [00:01:00] lot of work into these newsletters to make sure you get what you need. But we also want to hear from you. Bendy Bodies is your community. subscribe@hypermobilitymd.substack.com. Please submit questions directly on our website, bendy bodies podcast.com, where you can leave either a voicemail or a written question.

Also, check out our sponsors, including the Bendy Bodies Boutique. We are launching all new designs, so have fun mixing and matching to create unique merch. In this episode, we discuss communication and some recent drama surrounding the podcast. EDS patient and communications expert, Kate Colbert is playing guest host.

This is going to be really fun. So grab a salty snack, your favorite electrolyte drink. Get comfy in your favorite chair and get ready to rock and roll.

Okay. I am so excited to be here with Kate Colbert. Kate has incredible expertise in communications, marketing, public relations, and crisis communications. She's been a wordsmith and strategic [00:02:00] communicator her entire career, having been a professor of English composition and the founder and president of Silver Tree Communications, which advises corporate healthcare and university CEOs and others on high stakes communication issues.

Kate is the founder of a book publishing company that has represented more than 250 authors. She's the author of two commercially successful business books, which are absolutely outstanding. I can vouch for myself. She's also the founder of EDS Guardians and a patient advocate who helps bridge the communication gaps between patients and doctors.

And I can also say that she is an incredible friend and advocate, and I'm so excited to have her on the show today. Thanks so much for 

Kate Colbert: having me. You know, I have to say for folks who are listening that. The communication part of our relationship has been one of my favorite parts. And something you said to me in our very first meeting, um, when I became a patient of yours, has changed my life with your words.

And you'd said to me at the end of [00:03:00] that appointment, Kate, you are capable of difficult things. And every time I decide to go hiking after a big surgery or whatever crazy thing I'm up to, um, I think about that and I think I am capable of difficult things. So thank you for that. 

Dr. Linda Bluestein: Yes, of course. 

Kate Colbert: So let's get right into it.

Um, you are almost 160 episodes into, um, your podcasting odyssey, and you've really quickly become one of the most important voices in the world of hypermobility and in the EDS and HSD space. Bendy Bodies is currently the world's most popular hypermobility podcast, and I have met dozens and dozens, if not hundreds, um, across the years of people who say, you know, oh my gosh, you know, Dr.

Linda Bluestein. Um, I was actually at a conference sitting next to somebody who said, oh my gosh, I'm fangirling. I can't believe you know, Dr. Linda Bluestein. So, um, so that's been really a amazing, and so I hope you're proud of what you have built here. [00:04:00] I'm guessing that most days, uh, running a podcast, um, alongside everything else you're doing as a physician, um, feels like a power and a privilege.

But I'm guessing that some days it feels really hard, um, kind of hard to be expected to know it all, hard to know all the right people to invite, um, onto the show. Um, and, you know, um, hard to be sort of relentlessly camera ready, um, and, and, uh, reacting perfectly when a guest, um, maybe in inadvertently perpetuates a myth or says something you weren't expecting them to say, um, or even sort of ruffles some feathers with a small segment of your audience.

And so. As somebody who has devoted her career to communications, and that is to saying the right thing at the right time, at the right way, in the right place. Um, I'm really excited to have been invited on your show today to talk about some of the things that have been happening behind the scenes at the podcast and to kind of pull back the curtain for your listeners.

So, um, let's go ahead and get [00:05:00] really candid. I wanna talk about for a minute just to sort of set the stage for the listeners of the podcast today. About sort of what came before podcasts, right? So before there were podcasters, like you, there were talk show hosts, um, there were TV and radio, um, show hosts and sort of news anchors, right?

So, you know, I'm gonna date myself, right? But Phil Donahue, right? David Letterman, Oprah Winfrey, Stephen Colbert, we're not related, but, but, um, so, you know, I, I want people to be thinking about that dynamic that has happened across the years when somebody, whether it's an Oprah Winfrey or Phil Donohue, or whoever that is.

Inviting people to their microphone or to their stage, to the couch and inviting them on, inviting somebody on to your show does not necessarily mean as a, um, as a host, that you have the same knowledge or lived experience as your guest. In fact, you usually don't, do not, it does [00:06:00] not mean that you necessarily have the same, um, opinions or perspectives or ideologies on things.

And it doesn't mean that you're going to necessarily agree with everything that that guest says during that interview. Um, in fact, it's interesting to me something that's been happening. Podcasting. Um, so back in the day, you know, Phil Donahue or Oprah Winfrey could have somebody really polarizing on their show, right?

Whether they were, you know, hateful people or they were jumping on the couches, right? Sort of, you know, all of Tom Cruise, right? Um, you know, and, and people were not then reaching out to Oprah and saying, you know, oh my gosh, I can't believe you let him jump on your couch. Right? It was, if anybody took issue with what the guest was doing, they took issue with the guest, not with the host.

And something interesting is happening, I think, in podcasting in that people. Who listen, right? It's such an intimate experience being listening to a podcast, right? A lot of people have earbuds in, um, so do, you're almost sort of like [00:07:00] whispering in their ears. Um, and it's this, it's very different, right?

When you stand on a stage to talk to an audience, to project your voice. Um, but when you're podcasting, there's a more intimate relationship with the listener. And something I think inadvertently, uh, happens where listeners, if they disagree with something or that happens on a podcast, instead of running off to that guest and saying, can you explain that thing you said?

They come to the host and say, I have a bone to pick above that thing that your guest said, right? Um, as if you are somehow accountable for the grown adults who come on your show and say anything that they say. So I wanna talk about some of the surprises that have happened, um, in your first 160, uh, episodes, sort of in this regard.

So, could you. Tell us, um, some of your early experiences with this. So without naming names, um, what kinds of crazy things have people said on your show that you actually had to literally edit out of the recordings? 

Dr. Linda Bluestein: Yeah, no, I totally agree with all of what you [00:08:00] just said. And I would say a couple of the craziest things that have been said are, uh, one, all EDS patients are so attractive.

They could be models like, oh. Okay. Uh, that's, come on. Yeah. Isn't that true? Yeah, I know, I know, I know. Um, and that, you know, of course there is this myth that EDS patients are tall and thin, but like you said, when somebody comes on a show like this and makes a comment like that, all EDS patients are tall and thin.

Like that's something that I do edit out because I don't want to perpetuate that, that myth, because we come in all different body types, so I'm definitely not tall or thin. Yeah. Yeah. And many, many of my patients are, are not. So, and there, there have been actual entire episodes that I never aired, so that doesn't happen very often.

Wow. But that has actually happened, which you can imagine, I must feel pretty strongly about how that went because it's a lot of work that goes into every recording. And so if I didn't even air the episode at all, [00:09:00] then that tells you, you know, something, it, it doesn't happen very often. It's very, very rare.

But that has also 

Kate Colbert: happened. Oh, that's interesting. So, so is it's, it's typically that it sounds like then what people say is not necessarily something that's sort of offensive, but they're perpetuating myths around, um, EDS and HSD That's interesting. So, so let's talk about myths for a second and, and debunking them.

Um, now that you are EDS famous, um, and people are rushing to shake your hand at conferences saying, I've always wanted to meet you. I love that that happened to you recently. Um, that's gotta feel very cool. Um, are you hearing any myths 

Dr. Linda Bluestein: about you? Well, I have to share a little more context about this person who said I've always wanted to meet you, just because I thought it was so funny.

I was at the Veil Dance Festival and I was waiting and waiting and waiting to talk to Tyler Peck. And I was chatting with her mom, and her mom said, would you like me to introduce you? And I've, I've met, I've seen Tyler multiple times, but she, we were never like formally introduced, so she didn't know who I was.

So I'm standing there [00:10:00] waiting to, you know, meet her and get the more formal introduction. And I'm, I'm so excited. I just watched this incredible performance at the Veil Dance Festival and somehow I must have said my name and somebody behind me taps me on the shoulder and they're like, oh my God, you're Dr.

Linda Bluestein. I've always wanted to meet you. So I thought it was so funny. 'cause here I am waiting to meet, you know, somebody that I've always wanted to meet. And this person that's cute, hears me say my name. Yeah. Anyway, that was funny. That's great. And I also, and I also wanna, uh, say one truth first before I, uh, say any of the myths.

It is true that medicine was my plan B. I really, really, really, speaking of dance, I really, really, really wanted to be a professional dancer. So I, I love getting to combine my love of dance and my love of science. Now, um, some of the myths that says something about your intellect, right? Yeah. Like how many people's backup plan was to be a doctor?

Yeah. Yeah, it definitely, it definitely was. Um, but one of the myths is that I don't help people from states other than Wisconsin or Colorado. So people can fly to see me in Colorado or Wisconsin for their initial appointment and become [00:11:00] a patient. But, uh, even more so, I do coaching sessions with people all over the world.

And so that's, I think something that I want people to know. Um, also, there has been rumors going around in the past that I only treat dancers. Um, there was a recent rumor going around that I no longer see patients. Um, and as you know from some of the text we've had or some of the, you know, exhaustion that I've shared with you and we're trying to connect, um.

That's definitely a myth. Um, and there's also a myth, a myth that I was, you know, Dr. Chopra's student and he has been a wonderful mentor and he really encouraged me a lot. In fact, he's one of my biggest cheerleaders. I have learned a lot from him, but I've learned so much from other scientists and clinicians, and of course I learned everything that.

I know foundationally in medical school, you know, college of course started science classes, medical school, anesthesia, residency, you know, and I've learned from so many different people. In fact, one of the things I love [00:12:00] about podcasting is if there's something that I want to learn about, I try to find a guest who can teach that to me, and then I invite them on the show.

So it's a way for me to learn. That's great. As well as for my guests to learn. Yeah, it is really great because we're gonna talk about this more later in terms of like scientific quote unquote facts. Um, you know, there's only so much that's published in the literature, so I love learning from, from my guests and really I've learned most of what I know from my patients and from living in a body that also has EDS.

Kate Colbert: I love that. I love that. Um, so. A few minutes ago, you shared a couple of examples of some of the kinds of bloopers, um, that have happened, um, that have had to be edited out of the show. Are people saying things that are sort of untrue but maybe sort of flattering about EDS patients? Um, I actually heard a, a, a physician one time say, um, uh, you know, uh, that EDS patients are so intelligent.

I'm like, well, that might be true. But I was a little offended. Actually, I was in the [00:13:00] operating room last week with, uh, Dr. Boase, and, and he, he told somebody, he says, EDS patients talk a lot. EDS patients talk a lot. I'm like, it's because we're so smart. We have a lot to say. I'm like, I heard you once say we were kind of smart.

That's funny. Um, but, uh, that was a very funny moment. Um, so I wanna talk about some of the hot button issues that have actually have aired 

Dr. Linda Bluestein: mm-hmm. On your 

Kate Colbert: show, um, recently, um, or in the, you know, foreseeable past. Um, I know that like all. Talk show hosts and all podcast hosts, you have taken some heat, um, for some things that have been said on your show, things that you have said and things that your guests have said.

Um, so there was, you know, the autism moms who took issue, um, with your factual discussion about children with autism, um, and your personal experiences treating kids with autism who are not nonverbal, uh, but whose parents were insisting on speaking for them. And by the way, I have to say, I can totally relate to that as an [00:14:00] autism spouse.

Um, so my husband takes a lot of extra time to process things before he speaks, which sometimes. Comes off as if he doesn't have anything he wants to say or that he can't think of what he wants to say. And as somebody who talks for a living, it's really hard for me not to jump in and just speak for him.

Um, and so I have to bite my tongue to not answer, uh, for him or talk over him. But ultimately, if it was a medical setting and a doctor were to ask him a question, I would see why it would be really important for him to try to describe his pain or whatever else first. Um, so the struggle is real. I get that.

Um, as, as, as an, uh. Autism wife. Um, and then there were the listeners who really took issue, um, and kind of took you to task with your discussion of quote unquote labels. Mm-hmm. Um, you were talking about diagnoses and when we get a label, finally when somebody says, you have hypermobile EDS, you have vascular EDS, you have hypermobility spectrum disorder, Marfan Syndrome, et cetera.

Um, and you were having a conversation not too long [00:15:00] ago on a podcast, um, about that, and you were talking about the fact that with the Ehlers Danlos Society Road to 2026 and the diagnostic criteria changing for EDS, that there is the real possibility that for a lot of people, maybe millions of people, um, our labels might change.

Yours might change. Mm-hmm. Yeah. Um, mine might change. Um, and so you talked about that, but there were some people. And I thought you did a beautiful job talking about it doesn't matter what your diagnosis is, your symptoms are real, your suffering is real, your pain is real. And we need to talk about how we treat that and how we approach that.

And you deserve, um, the care that you seek, uh, regardless of your label. And you'd gotten, um. What, what was that? What was people's issue sort of with the labels thing? I, I'm not even sure I understand why people were upset. Yeah, 

Dr. Linda Bluestein: yeah. And I really appreciate the opportunity to have this conversation because I don't know that a lot of people realize the dynamic, like on social media.

So I do my best to try to track comments and things like that. [00:16:00] But as the show has gotten more and more popular, and there are many thousands of people now who listen to each episode and of course lots of followers on social media, so I don't see every single comment. I, I, I try, but you know, I have a medical practice, I have the coaching practice and the podcast.

It's really hard to stand top of things. Yeah. Yeah. So the best way, if you really want a comment to be seen is to, uh, leave it on bebo podcast.com if you really have feedback that you really wanna make sure that somebody sees. So I just wanna share that first. But what some people said was that they need that label for accommodations in school or at work, or they need that in order to get certain coverage for things through their insurance.

And those are valid concerns. It's so hard because when you're recording a episode, and that was a solo episode, so you know, I'm literally just like looking into a camera, you know, making these comments. Chatting, yeah, yeah. Chatting with myself, you know, and so it's way easier to chat with you than it is to chat with myself and try to think of all the relevant things.

Even though of course I prepare in [00:17:00] advance, I try to think of as many things as possible that are pertinent, of course. But it turns out that, you know, there's a lot of people who said, no, no, no, those labels are important. I was like, oh yeah, good. Those are excellent points. Right. So I know you've talked to me about having possible, like talk back episodes.

So instead of just having solo episodes, having talk back episodes where I address the feedback, which of course, you know, is so, so helpful, and most of it's incredibly positive, but some of it is where I think, oh darn it. I wish I had said something differently or done something differently, because I've had tons of patients say to me, I don't care about the label.

Maybe I did just meet the criteria for hypermobile EDS, but I actually don't want that on my chart right now. Can we hold off on putting that on my chart? I've had that happen a lot of times actually. Yeah. So I think that's interesting. Yeah, it's really interesting. So I think the other thing that's so important for people to be aware of is, you know, when I'm talking to somebody one-on-one in the clinic or one-on-one, when I'm coaching them, I know a lot about their individual circumstances so I [00:18:00] can tailor my comments to their needs.

But when I'm talking on the podcast and there's thousands of people listening, everyone's search situation is going to be different. So it's a lot harder, yeah. To make sure that everyone is getting their needs addressed. 

Kate Colbert: Yeah, that makes sense. Right? So you have to sort of cast a wide net when you're having these conversations.

And I think, you know, one of the things that's really challenging too is that. One of the things I really appreciate about your show is the fact that you are very careful to always, um, present things from your own actual experience as a physician. What you're seeing in the clinic with your patients, um, you know, what you're reading, what you know to be, you know, sort of factually true and evidence-based and what whatnot.

Um, but your episodes are relatively long because you go in depth on some big topics, right? And so when you've already got an hour of something, it's hard to then, you know, every comment get that gets made, say, well, but there are exceptions to this, or there might be patients who, right? And so all of those sort of asides, [00:19:00] um, right, it's so like, like a Shakespeare and play where you're gonna, like, you look to the audience and then you talk to the audience, right?

So you go from your soliloquy to your, your side. Um, and those episodes would get really long. Mm-hmm. If you, if you had a caveat for everything that you said or if you challenged every single thing that your guests say and say, well, but that, I see your point, but is that. Maybe not true for every patient or, um, and so I think too, I think it's really important, um, that listeners to any kind of podcast, um, understand that, that there's always more to a message.

Dr. Linda Bluestein: Mm-hmm. 

Kate Colbert: Right? There's always additional context. Um, and there's usually a backstory for everything that somebody says online, um, and on a podcast, right? So there's years and years of, uh, insight. So you recently, um, had Dr. Louw on your show talking about, um, pain, neuroscience, and every now and then, you know, he would say something that would be like a really great soundbite, but if you were to ask him, like, could you go into [00:20:00] like how you know that, um, you know, he could write an entire book on how he knows that, or he has written an entire book or, you know, hundreds of peer reviewed, uh, journal articles on those things.

Right. But we're trying really hard when we come to a microphone on a podcast to distill the insights, um, and the, um. The professional opinions and the sort of experienced opinions down to something that the listener can take and absorb and maybe feel or know or do something about really quickly. And so that leaves a lot of room, I think, for interpretation.

Um, let's talk about an episode you just did with Dr. Pradeep Chopra, um, whose name actually already came up in our conversation today. Um, so that episode I think was originally started out talking about GI manifestations, correct? Um, of EDS, yes. Okay. And so, and then at somewhere in that conversation, you guys somehow got onto the topic of the dental manifestations, the sort of dental and oral manifestations of hypermobility.[00:21:00] 

Um, and you heard from directly, um, from a couple of dentists and oral surgeons who identified what they believed to be a few misleading or inaccurate statements, um, in the episode. Where you guys were talking about dental health. So they had said, you know, I disagree with or think this is wrong, what he said about dental health.

Can you tell me a little bit about the feedback you received about that episode and then how you responded, how you 

Dr. Linda Bluestein: handled that? So. I love that question. So this episode was about GI manifestations, but he's, his plan for the episode was to kind of go through the GI tract and start with the teeth, because the mouth is the beginning of the GI tract.

So that's how the teeth got, got rolled into it. Okay. Yeah. Yeah. And, and he started out by saying that, you know, did you know that people with EDS have dancing teeth? And, and again, you know, like what you said about Dr. Boase, who we both love of course, and totally respect. He's amazing. Um, you know, his, I [00:22:00] let him put Staples in my head last week, fyi.

So obviously trust the man. Yeah. And, and, and that's where I send my patients that I feel like need to see a neurosurgeon. I send them Dr. Boase. Yeah. So, uh, you know, him making a comment about EDS patients talk a lot. You know, uh, people, you're right, people say generalizations and we would have no flow if every time somebody said something, I said, what's the source for that?

Or how do you know that you Right. Because he challenged everything. Yeah. Yeah. And, and we want it to be, and, you know, entertaining and interesting as well as, you know, accurate. So, so that was one comment that he made that, uh, I received feedback about. Um, he also, you know, said that toothpaste is abrasive and bad for you and kind of a given example of a different.

Type of, um, way that you should brush your teeth using a different product. And people love these analogies that Dr. Chopra uses. He uses a lot of metaphors and, you know, he, he so often, um, attempts to make medical concepts accessible to a broad audience, but in [00:23:00] the process sometimes I think oversimplifies things without really explaining why he's done that.

And you know, he also has access to so many lived experiences as a doctor who's seen tons and tons of EDS patients. Yeah. Um, and a lot of these things have not been published about at all. So he might say something that's really based on his clinical practice. And, and I do have to say as somebody else who treats EDS patients, I don't know how his numbers compare to mine.

He probably has more than me 'cause he's been doing it longer. I had 20 years in the operating room before I started doing this. So I have a very vast, um, experience in the operating room. And I have a lot of patients that, you know, I've treated for EDS, but in my patient population, I have not seen the same kind of dental issues that he's reporting.

Now, the interesting thing is there is a form of EDS, periodontal EDS, and in fact, there's some evidence, um, that potentially periodontal EDS and hypermobile EDS may share some commonalities. [00:24:00] So, you know, it gets pretty muddy pretty quickly. Yeah, and most of the things that we talk about on the show, honestly are not referencing, you know, published scientific studies.

A lot of it is people's, you know, clinical expertise. And we'll get more into that in a little bit. But yes, I did get emails from experts, um, dentists, oral surgeons, et cetera. Um, who. Are in the EDS space, they're also treating EDS patients. Now of course, they're addressing more of the oral issues. Um, but they, but they took issue and rebutted some of his comments.

And I have to say I am very grateful to both them and to Dr. Chopra, who then wrote back to me with like this long, long, you know, response to each of the comments. Um, because people obviously are taking time to listen slowly, they must have to hit pause and then make all these Yeah. You know? Yeah. Add all this commentary.

So I really appreciate people taking the time to do this, but I also have to say that sorting out the open quote, close quote facts is [00:25:00] not so easy. Right. A lot of this. It's really, really hard to sort out for anybody who's actually tried to like fact check something in science, it's not the same thing as fact checking.

Like, well, you know, somebody misquoted a score of a game last night, so let's just make sure we get that correct. You know, in science it's a lot different. So, um, one of the concerns that was brought up was, we don't want e DSRs to stop brushing their teeth and then they end up needing major dental work, which that could then cause neck injuries.

So I did seriously consider having my team edit out that section of the episode, um, on GI issues that. You know, pertain to dentistry, but I think instead what I'm going to do is as add a disclaimer before that or something like that. But, um, you know, I did ask my team to take down the social posts and I had a, a follower message me, where did that post go?

Where did it go? Yeah. Yeah. So, so it's, it's crazy how closely people are following along, right? Correct. Correct. So it, it is interesting because as the show gets bigger, which I'm so happy about of course, because I want everyone to know [00:26:00] about these concerns that we have in bodies that have different connective tissue.

It's very, very important to be aware of the things that can happen. I think it's also important for people to be aware that a lot of these things are based in opinion and might be based in science, but might not be actual, like, absolute facts and be the thought that everyone in the space believes. 

Kate Colbert: Yeah.

Well, and I think it's interesting, I think you made an interesting point about sort of what you see in clinic, right? So, um. Sometimes, um, I've noticed, so I work with a lot of doctors and, um, not just as a patient, but I, I do a lot of, uh, marketing and and consulting for the healthcare, uh, industry. And one of the things that sort of happens is that you end up becoming sort of like the go-to person for like a niche within a niche because patients talk, right?

So for example, you know, if you had, um, you know, a couple of patients who [00:27:00] were really severe, frequent dislocators, so they had lots of knee and ankle and hip pain and whatnot because of their frequent daily dislocations, they might mention something in a support group and other people who have that sort of symptomology, um, might all sort of rush to become your patients.

And then suddenly you're just like, wow, like it seems like 70% of of all EDS patients, you know, dislocate frequently. And um, and then there might be other, uh, providers who have. An exclusive population or a lot of EDS patients in their patient population who don't have the frequent dislocators coming in.

Right. Or, um, you know, there's, so there ends up being sort of bias based on what you see. Um, and so it's possible for things to, multiple things to be true at once, right? For an oral surgeon to say, I rarely see X, Y, Z, um, in EDS patients and I have a lot of them. And for Dr. Chopper or you or anyone else to say, oh, I see that all the time, um, in my EDS patients, because you have different patients than they do, right?

Right. And [00:28:00] so you end up with these interesting sort of, um, I thought it was fascinating. Um. A little depressing. Um, when I was recently, uh, checking in at Mount Sinai for invasive uh, neurosurgical testing. Um, and, uh, Dr. Boes and I were talking about you because you referred me to him. And, um, and I said something, I don't know how it came up, but I had said something about him, like, I don't think she has problems with her neck.

Um, you know, like, like, like CCI like serious problems with her neck. And then he says, he's like, give it time. And I'm like, oh. I'm like, interesting. I'm like, you think that all EDS patients eventually have their necks fail? He said, yes. And I didn't challenge him on that because of course. All the EDS patients whose necks are failing are showing up in his operating room.

Right. So he sees a ton of that, right? That there's this bias. So, but there are a ton of people, you know, out there with EDS whose necks are doing really fine, right? Um, I, I'm, I'm embarrassed to tell you this, but it's his embarrassment and I'm not mine. So when I told him, I, I'm like, well, if anything goes wrong with her neck, I'm sure she'll come [00:29:00] to you.

And he put his hands together and for anybody who's watching the video version of us, and he goes like, he was like, all excited to operate on you. I'm like, no. I'm like, I don't want her neck to follow her. Oh no. So, but again, I think that's a really great example of the fact that. You know, in your specialty and then sort of niches within niches, within niches of specialties, um, you're all gonna see sort of different things.

And so it's possible for multiple things to be true at once. And to say, in my population of patients, here's what I'm currently seeing. And what you're currently seeing might not be what you're seeing five years from now. And so I think that's interesting. I wanna talk about a, another controversy from that same episode, uh, because I think that there were some people who had, uh, this, this sort of plays into what we're talking about right now about Eagle syndrome.

Dr. Linda Bluestein: Mm-hmm. 

Kate Colbert: So people, um, so I think, uh, Dr. Chopra had talked about Eagle syndrome being pretty common, um, among EDS patients. And then somebody reached out to you and said. You know, I do x-rays on my patients, um, and I, I'm not seeing like Hypertrophied, YLS on like a lot of my patients. [00:30:00] Um, and as somebody who was just diagnosed with Eagle, um, and got, um, the experience of getting a glossopharyngeal nerve block recently to feel what might feel like not to have those YLS in there, um, you know, I found it really fascinating and important, um, that this came up recently in an episode.

Um, and that, that there was a little bit of a sort of nod to it in the episode. Like, Hey, you know, if you're having certain types of symptoms, you could have this complication that we see more in EDS than we see in the general population. Um, but somebody reached out to you and said, no, you know, I, I would hate to think that somebody runs off and, you know, has, first of all, I can't imagine anybody doing a neck surgery on somebody if they didn't need it.

If they don't have hypertrophied steroids, they're not gonna operate on them. But anyway, um. Can you talk a little bit about the sort of back and forth and controversy you've had with people in these last couple of weeks around how common or not common, uh, Eagle Syndrome is in EDS? 

Dr. Linda Bluestein: Yeah, I think, I think this is a good example.

And like you said, we all have [00:31:00] biased populations, so people who are looking for certain things are much more likely to come to see me as compared to, you know, somebody else. And I, and I say this all the time to people when they're asking me should I do regenerative medicine for this particular procedure or should I do surgery or should I do this or should I do that?

And I do wanna say before I address more specifically Eagle Syndrome, although I don't wanna get too way laid into that, um, for surgeons. Choosing who to operate on is, is everything. And there are surgeons, especially earlier in their career who are much more liberal on who they operate on. And when I was working as an anesthesiologist, all of us who worked in the operating room, we knew if we really wanted a surgery, you would go to a certain surgeon because you knew that their threshold was really low and they would operate on Wow.

Pretty much anyone who walked through the door that, that, you know, they still had to meet like certain criteria, but their threshold was very different. And then as the surgeons in general go through their career, they often do get more and more [00:32:00] cautious because they've seen more and more complications.

And so it's very, very common for, for surgeons who are older, closer to, to retirement, to be much more selective. And this is what I love about Dr. Boase, is I feel like he is, um, quite selective in who he operates on. And that's everything to me, because I don't want, yeah, I don't want anyone to have surgery that they don't need because, you know.

Always the risk of course, of you know, the complications from the surgery, complications from anesthesia. So go. It's funny, I went to a, I was like shadowing a surgeon for half a day just to kind of see how they. Do things. I've, by the way, I've done that a lot. I've gone to other, I went to an interventional radiologist and I shadowed her for half a day.

I like to learn in as many different ways as I possibly can. So I take advantage of the fact that I don't work for anybody but myself so I can go and do these things. Plus they also know you don know how to play nice in 

Kate Colbert: an operating room. 

Dr. Linda Bluestein: Yeah. Being an 

Kate Colbert: anesthesiologist, so I'm sure, I'm guessing you don't get a whole lot of No.

When you say, can I come observe your surgery? 

Dr. Linda Bluestein: [00:33:00] No. No. I don't. I don't. And I know what not to touch, so Yeah. I know not to go up and be like, what's that? Um, so, so, oh yeah. They had just disinfected my head and I I like reached up and they're like, don't touch it. Don't touch that. Yeah, yeah, yeah. Exactly.

Exactly. That's the whole thing with medical students, oftentimes we literally will put them in this, um, the, or surgical gown and we'll put their arms down so they literally can't touch anything because you don't necessarily, you don't, you just, that's hilarious. Isn't that funny? Yeah, true story. True story.

We've done that. That's funny. 

Kate Colbert: That's like, that, that's like that moment that like with, with the, um, in, uh. Grey's Anatomy where the me, the student leans over and his glasses fall off and lands in the field. Oh. And so they call him glasses, 

Dr. Linda Bluestein: like for the rest of 

Kate Colbert: his training? Yeah, yeah, 

Dr. Linda Bluestein: yeah. I think there might have been an episode where a piece of broccoli fell outta someone's mask.

Mask or something. But anyway, um, that's horrible. Yeah, it's horrible. It's horrible. So definitely you want to have surgery when you, when you need it, and sometimes you can have findings, whether it's eagle syndrome or compression syndromes. You [00:34:00] can have findings on imaging, but that doesn't automatically mean that it's cause and effect.

So that's where you need a surgeon who has not only a. Strong ethics and a good clinical background to know when are these findings relevant and when are these findings there, but possibly not causative. Um, so it's, it's, it's a lot more complex than most people realize. I think most people think, oh, a surgeon is, is, you know, they technically do the surgery.

And I know, I think there's some countries where surgeons don't have as high regard as they do here in the States. In fact, I think Dr. Boase might have even made a comment about that when I interviewed him. Interesting. For the podcast. But, but anyway, um, yeah, Eagle Syndrome is, or if we, if we go back to like the more foundational thing of elongated yls.

With or without symptoms. 'cause if you don't have the symptoms associated, then you could have the elongated YLS but not have, quote unquote eagle syndrome, the syndrome. Uh, which by yeah, which, which by the way, the elongated YLS are for people who are watching on, on video. They're kind of like really [00:35:00] close to your jaw, which is where the dentist, you know, making the comment about doing x-rays and, and all of that.

And so that, but they can get elongated and or, um, they can get hypertrophy and, and calcified and they can compress the, uh, jugular veins. So that's where they can cause complications. And it does appear that this is more common in people with EDS than in people who don't have EDS. And then there was question of, you know, well, is it more often unilateral or bilateral?

You know, it's, these kind of things are very, very important to study in the proper way. And I do believe that there's some research investigating this right now that I think will be very important and. Helpful for the community to, to know, but in the meantime, you know, yeah, there were some opinions shared about how common Eagle Syndrome is and you know, we all have biased populations.

Certain people choose to come see me, certain people choose to come see Dr. Chopra or, you know, either of these, uh, oral surgeons and dentists. So it's really. At the end of the day, I [00:36:00] think it's very important for me to factor that into consideration when I'm treating someone and when I'm advising them about certain procedures.

Because if someone has had a surgery and it was incredibly successful, then they're not necessarily gonna come back and see me or come and see me in the first place. So, um, I feel sorry for my friends, if any of my friends are listening to this right now. I do like to hear about your medical experiences, um, and I like to pet your skin and I like to see how stretchy your skin is because it kind of broadens my Yeah.

Knowledge base. So I, I have friends who are hypermobile and they're not young. They're in their sixties or seventies. And so I like to find out from them like what their childhood was like to get a better, uh, you know, sense of things. So let's take a quick break and we'll continue this conversation when we come back.

I am super excited to tell you about the Bendy Bodies boutique. I'm so proud of our fierce styles and flexible designs. These are created by Hypermobile artists. For Hypermobile shoppers, [00:37:00] there are so many fun items from clothing, accessories, home goods, and my favorite are the bags. I especially love the weak Weekender tote with one of the EDS tough designs.

Whether you're shopping for yourself or someone you love, there's so many options to choose from. A portion of the proceeds goes to support EDS nonprofit organizations. For more information, please visit bendy bodies boutique.com. Thank you so much for listening to Bendy Bodies. We really appreciate your support.

It really helps the podcast when you like, subscribe and comment on YouTube and follow rate and review on all audio platforms. This helps us reach so many more people and spread the information to everyone. Thank you so much again, and enjoy the rest of the episode.

Kate Colbert: Okay, so I am loving this conversation we just had about Eagle syndrome, and I know we can't, um, sort of name names or maybe even sort of share numbers, but, um, you had shared with me that, um, in doing a little bit of fact checking about the comments about Eagle syndrome after [00:38:00] somebody sort of took you to task on whether or not it's really that common, um, that somebody who would really know, um, is actually about to publish some data.

Um, really sort of, uh, demonstrating that Eagle Syndrome is much, much higher incidence among EDS patients than it is in the general population. Um, and so, so that, that's interesting. And again, I think you made an interesting point a few minutes back where you were talking about, um, you kind of, uh, leaned into this idea that.

That what we know about EDS is this body of knowledge about EDS is really growing and it's growing exponentially. Um, you know, I was diagnosed just six years ago and when I was diagnosed, nobody knew what EDS was. I think I would mention it, you know, to one of my doctors. And they like, I've heard of it, I think, right?

And that was kind of it, right? And they were googling it, right? And now you can literally, you know, be chatting with your cashier at the grocery store and if you mentioned you have EDS, they'll be like, my granddaughter has that. Or, um, [00:39:00] you know, and so the, the awareness, um, the, the rate of diagnosis is going up and then our understanding of sort of what is happening to the body and why and how to approach these symptoms is really, I think, um, accelerating really, really quickly.

But what's not keeping up with probably what you're observing in clinic with your patients is the ability for somebody to. Listen to your podcast and hear something about, you know, equal syndrome is more common, uh, you know, in EDS patients or whatever. And they may or may not be able to validate that, you know, sort of quote unquote, um, with Google or chat GPT, if those of you who are so busy treating all of us have not had a chance to go speak about that or publish that.

Right. And so it doesn't mean it's not true, it just means it hasn't been published yet. Um, so I, I think, and again, and I actually should backtrack, that experts, all the doctors and scientists and other, um, leaders in their space who come on your show when they talk about these things on your show, they are publishing that, [00:40:00] right?

So a podcast is a publication. It is a, you know, and I think that that's an interesting thing for people to realize too, is that. There will be points at which somebody's gonna be listening to another podcast or somebody else doing something else, and they're going to quote unquote fact check it by coming back to the Bendy Bodies podcast and saying, well, this expert guest who said X, Y, z, when, when they were talking to Dr.

Linda Bluestein, validated that. Right. And so I think what sometimes must happen on your show is that listeners hear something for the first time on your show, and so therefore they question is that true? 

Dr. Linda Bluestein: Mm-hmm. 

Kate Colbert: But once they start hearing it other places and seeing it written down other places, ultimately you are going to be the original source.

And that's really interesting. Right. And so that might be a good way to remind yourself when, you know, when you're feeling exhausted by people reaching out and questioning anything that's been on the show for to say. Yeah. We, we might be one of the first places you've heard that. That's okay. Right. Um, I do wanna, um, sort of reflect on, there's just so many [00:41:00] examples, right?

We've just talked through a few, but there's a lot of examples of this, I think in the EDS community of things that are, um. Not common in the general population, but that are relatively common in the EDS population. Right? So this brings us back to the, um, the hoof beats. Alright? Um, when you hear hoof beats think, um, horses, not zebras, but in the case of, um, complex patients, um, people think of us as sort of the zebra, the zebra phenomenon.

Um, I was diagnosed with hypermobile EDS because of one of these examples, right? I had, um, read something online that basically said thoracic outlet syndrome is pretty rare, but it's pretty common in people with Aler Stanler syndrome. And I thought, oh, that's really weird because a month or two ago somebody told me they thought my dislocating joints might be this condition called Ehlers-Danlos Syndrome.

And I'd kind of blown it off because this is the body I've lived in my whole life. And for me, the way things dislocate and do bizarre things is quote unquote normal. Um. [00:42:00] And I thought, Hmm, okay, well that's unusual. That was the light bulb moment for me. The thoracic outlet syndrome is, is uncommon in the general population, but somewhat common in the EDS population was the light bulb moment that got me to finally go to the Wikipedia page entry for EDS and to read it and to burst into tears and go wake my husband up from a nap and say, oh my gosh, I know what's wrong with me.

My whole life makes sense now. Right? And so I think that, um, it, it, you know, and I was very, very lucky to get my diagnosis very quickly. Within a matter of weeks I'd been seen my by, I'm pretty tenacious, but by my primary care doctor, a rheumatologist, um, and a geneticist, and get my diagnosis quite quickly.

But I think we hear these caveats in the hypermobility space all the time, right? So thoracic outlet syndrome is rare. But not an EDS Eagle syndrome is rare, but not an EDS tethered Cord syndrome is rare, but not an EDS cranio. Cervical instability is rare, but not an EDS Vascular compressions are rare, but not an EDS.

And so you see a pattern here. Um, and so, [00:43:00] um, CRPS is rare, um, but not in EDS. Um, and so I think that that's really, really, um, interesting for for us to be, um, thinking, um, thinking about, so this leads me to a critical question. Do you think that the reason why some listeners to your show, um, have, um, strong reactions, um, to, to quickly sort of rebut or deny some of the assertions, um, of your experts, um, is because they, as a patient, um.

You know, just haven't seen, um, what, what they're hearing about or if they're a provider that maybe they haven't seen. The kind of prevalence of these complications that you have or Dr. Chopper has or some of your other guests. Is, is, is that, do you think, what's sort of behind that? 

Dr. Linda Bluestein: I think that definitely plays a role, and I think a, a really important thing to think about is confirmation bias.

So if, if we see a list of things that are consistent with louisie diet [00:44:00] syndrome, I had, I had this happen not long ago. Somebody had genetic testing ordered by somebody else and they came back with a variant of uncertain significance. And one of those genes was a gene that can be abnormal in louisie diet syndrome.

Now, they did not have the abnormality that causes Louis Diet syndrome, but they had a variant of uncertain significance, meaning we don't know how significant it is in, in a gene that can cause Louis Diet syndrome. So then they went to, you know, some source online and they found a list of things that are.

Symptoms of Louis Dietz syndrome. And what they didn't realize was that when they went through the list and were like, yes, yes, yes, yes, yes, I have these things. They didn't realize that those were the much less specific symptoms for Louis Dietz. And they did not have any of the really highly specific symptoms.

So confirmation bias is a very real thing, and it's something that we all struggle with. And it's just so important to be aware of because it's very easy to read something and think. Yeah, I, yeah, I agree with that. I, [00:45:00] I have that. I have that. Yeah. And it may or may not be accurate. Maybe it is, maybe it's not.

But just being aware of it I think is one really helpful thing. And also, people who have EDS and HSD usually have had a lot of trauma. It might be physical, it might be psychological, but it's related to not only their physical body and how that. Is experienced on a daily basis, but it also is related to how they've been treated in the medical community because most people have many, um, negative experiences.

So I think that's also why people often have a visceral reaction when something is said that either validates their experience or invalidates their experience. So they may have a very visceral reaction, either positively or negatively. 

Kate Colbert: Yeah, that makes sense. Right. So, you know, I, yeah, I think that's a really important thing.

Is there anything else that you think listeners should be keeping in mind when listening to your show or other medical shows or other shows that, um, [00:46:00] discuss complex or technical or, uh, very, um, consequential topics, um, when it comes to, um, quote unquote facts, um, and, and sort of, you know, how, sort of how we define facts and, and how things become facts.

Um, anything else you would want listeners to be aware of? 

Dr. Linda Bluestein: For, for sure. So, so first, you know, ideally we would have definitive information and scientific facts, and I'm doing air quotes, um, on which we would base all of our decisions, but in instead, we have to weigh the available evidence and we have to accept that there are fewer facts in science than we would really like.

So if anyone has tried to fact check something in science, um, they would probably quickly realize a few things. Number one, most things, especially in EDS, have not been adequately studied, and I'm really glad that you pointed out about those of us who are treating patients and how we haven't published yet.

A lot of us will never have time to publish. I don't have access to an IRB, I don't have. [00:47:00] Incredible amount of time that it takes to publish a paper. When I talked to, um, Dr. Courtney Zimmer, who I know you know, uh, quite well, who is at MUSC in a lab doing fantastic research, you know, that is what they do is they do scientific studies and they publish and they have a whole big team.

And if you look, oftentimes the number of authors on any given paper is, is quite extensive. And I don't think people realize how much is involved in publishing a paper, doing a study, especially doing a study with good scientific rigor, you know, where you have a control group and a treatment group. And so you also then have to be willing to have a group that might be getting a placebo.

And as Dr. Chopra commented, not long ago, like. People don't necessarily have the time to wait or to take a placebo. So I think it's just important for people to be aware that there's a lot of things that we would love to study in EDS, but those of us who are treating people with EDS kind of feel like time is of the essence.

And so we have to weigh the risks and benefits of all the treatments that we're doing. And then we see how people respond. And [00:48:00] if there's a treatment that is relatively safe, which oftentimes there is, um, you know, we might go ahead and recommend that. And of course then the person has to consider if they wanna try that or not.

Um, we also have to think about the fact that all studies have limitations and flaws. And if you are publishing a paper, you actually have to have a section on the limitations of your study. So that's something that I don't know a lot of people would be thinking about when they think about a published paper.

And so there's also, I thought it was great that you mentioned about the podcast and how that, is it publishing something right. And oftentimes things are built on, you know, not a a sturdy brick foundation, but maybe somebody makes a comment and then something, somebody else references that next thing.

You know, it becomes kind of like widespread, like, oh, this is absolutely true, but it may or may not be based on something that's pretty solid. So, um, you know, how studies are designed can greatly influence the results. So it's also important to think about that even when we're talking about, you know, [00:49:00] quoting a specific study.

Um, you also talked about how things are very nuanced, which is so true. I mean, there's very few things in science that are like, absolutely your risk of lung cancer is increased if you smoke. Like that is a fact. But recently I was trying to decide what to do with, um, one of my treatments and I did so much research and I talked to my doctors, and at the end of the day, what we had to conclude was that nobody knows, you know, and so we had to just kind of make our best guess.

So. All of us healthcare professionals and patients, we are also all influenced a lot more by stories and by our own experiences more than we are by studies. So I think that's an important thing to be aware of. Yeah, I like that. Yeah. And I also wanna say that you have heard me repeat stories of patients de-identified, of course, but I've shared with you, um, before I had this patient, blah, blah, blah, blah, blah, you know, they were able to get better.

They did not end up having [00:50:00] neurosurgery. And, you know, those types of stories really do resonate with us and probably impact us more than like reading a lot of studies. So. We're human beings, we're impacted by other human beings. And I wish that I had all the facts and all the answers to share on this show.

I wish that when people came to see me, I could be like, aha. I know the one thing that nobody else knows about EDS, but it's really more like you said, like an accumulation of my own lived experience treating patients. What I know from reading, um, et cetera. I mean, I'm a Mayo Clinic trained anesthesiologist.

I have more than three decades of clinical experience, so I know a lot about anesthesia. I know a lot about EDS. I know a lot about pain, but I also invite experts onto my show because there's so many other things that I want to learn about, and they have diverse areas of expertise. That I can really, you know, share with the audience, but also learn at the same time.

So in a clinic setting, evidence-based medicine [00:51:00] means that we integrate the best available research evidence with clinical expertise, and then we also incorporate the patient values to make decisions about patient care. And this is kind of the strategy that I like to, um, adapt for the podcast. So we share what we know from scientific literature and also from our clinical experiences.

Sometimes a guest does swim a bit outside their lane without malice, of course. And going forward, I am gonna put into place guidelines so that the listener can have a better idea of when someone is sharing something that is their opinion, especially if it's, if it's their opinion, but is not necessarily held by the majority in that space.

And when they're saying something that's based on scientific studies. Scientific accuracy is something all of us in podcasting do struggle with. I hear people talk about this on other shows. Um, many of you may know Dr. Mike, he has a massive following, um, and on his show, he sounds a bell that I'm, I'm sure is added post-production and lets people know when something is being quote, FactCheck for accuracy.

Um, [00:52:00] so I think this is just important to share and reinforce the fact that fact checking in science, again, is something that is important to do, but also has limitations. 

Kate Colbert: Yeah, I mean, it's gotta be really difficult. And I think, I love that you talked about stories, right? So I think it's important for those of us who are listening to a show like yours, if we hear something that runs counter to our experience, right?

Um, it's okay to say, well, that doctor said they see a lot of this, or they've experienced this. Or somebody who has EDS or another condition that I have says that here's how their symptoms, um, look or feel. And that's different from mine. But if I'm listening to your show and I want to feel that the EDS community believes that my stories are valid and my pain, my suffering, my experiences are valid, it is incumbent upon me then to also acknowledge the validity of other people's stories, even if they're different than mine.

And you said something to me [00:53:00] once that I think is really important, and you said. If you've seen one EDS patient, you've seen one EDS patient, right? Mm-hmm. Meaning that for all the ways in which we have similarities and therefore can sort of fit into some diagnostic criteria, we're all really, really different.

Um, and that's why it's so important, um, that we get to see different stories from different patients and hear from different clinicians and scientists. Um, I wanna, uh, circle back to something you said a minute ago in case anybody, um, who's listening is wondering what is an IRB? So you were talking about research and Oh, yes.

And you said, I don't have an IRB, so as a internal review board. Um, so it's, it's essentially sort of the, uh, compliance body, um, at a medical university or a research hospital or other research institution that makes sure that research studies are being run. Um. Ethically and, um, in a way that, um, will generate good results.

I used to work at a medical university and as the head of communications, I worked with the IRB all the time. Mm-hmm. And we [00:54:00] shut down a lot of studies mm-hmm. That were not, uh, that were not, uh, uh, relevant, um, or didn't have, you know, the, to your point, sort of, you know, some sort of placebo or control group.

So that's what an IRB is actually, while we're sort of talking about technical stuff, I wanted to give a little tip. I'm gonna have to read my notes so I get this right for your, for your listeners. Um, so now that we've sort of told people that sometimes podcast episodes, um, a couple times with your podcast has been released, and then maybe you've edited something out after it's been released, um, and, and that happens with other podcasts all the time, people might be wondering, but how do I get the newest version?

Um, so if a podcast episode that's already been released, um, has been put out there, um, how do you, how do you get download sort of that new version of a podcast? Um, so let me sort of explain that to you 'cause this is a quick little, um. Tech hack, uh, listener hack. Um, so most, um, most podcast platforms, um, won't automatically.

So if you listen to a show that you really love and you have [00:55:00] subscribed to it and it automatically downloads to your podcast app on your phone or whatever device you're using, if that podcaster goes and makes changes to it and they upload a new file, you are going to still have the original, the old one.

Um, if you wanna get the new one. Um, um, here's how you do that. So let's imagine you subscribe to bendy bodies, um, and we know that thousands and thousands of you do. And if you don't go hit that button, um, the moment that an episode is released, it gets downloaded to your phone or wherever you have your podcast app.

So how do you get the new version if an app episode has ever been updated? So let me give an example for Apple Podcasts. So on Apple Podcasts, you open the podcast app, um, then you find the podcast, you find bendy bodies. Um, then you locate the specific episode, you're looking for an update on if the episode has been updated.

You might see a play button there. Instead of a download icon, you might need to tap and hold the episode. Um, and then select update episode or a similar option. If there is no explicit [00:56:00] update option, and this is the more surefire way to do this anyway, you might need to remove the episode if it's been downloaded.

So actually remove or hit the word remove or hit the word delete for that episode, and then go redownload it. When you redownload it, it will give you, um, the most current version. Um, and so listening to that most current version gives you the opportunity to hear any new commentary, um, that's been added.

Um, so I would definitely recommend doing this and I think, you know, once or twice, um, with your podcast and a handful of times with other people's podcasts that I listened to, um, I've gone and done that because I was, uh, tipped off that there has been a change to the episode. So that is your listener hack for podcasting.

So let's talk about one more public relations drama, um, and sort of. You recently, uh, uh, feature Dr. Adrian, uh, Louw on your show, who's a pain neuroscience specialist. Um, and he's a pain neuroscience educator and, um, a highly renowned physical therapist. I know he was a, [00:57:00] he was a really sort of great get, as they say in, um, in the podcasting game in terms of, uh, booking him on the show.

I personally loved this episode. Like I kept pausing it and taking notes and, um, I found it really validating. Um, I think maybe one of my favorite things about the show is the way that the two of you were talking about pain and suffering and sort of sharing your dedication to getting patients out of pain, um, regardless of what their diagnosis was.

Um, and I loved the conversation around neuroplasticity, that changing nature of the brain, um, which can give EDS patients or people with any sort of chronic pain hope that if the brain is constantly rewiring itself and changing then what the brain is doing to create and cause pain, um. The way that it's doing that today might be different tomorrow or next week, or next month or next year.

So the amount of pain that we have now might not be what we're experiencing later. So I think that, for me, gave me a ton of hope. So I really loved listening to that. I didn't [00:58:00] hear anything in the episode that gave me pause or that I thought would trigger anything from your, a subset of your listeners.

And then bam, um, some parents and a documentarian, uh, reached out to you, um, popped into your email inbox with some very passionate criticisms of one specific moment in the episode. So let's play it. 

Dr. Linda Bluestein: Are there certain things that you would recommend to parents, even if their child doesn't have persistent pain, but that might help them be able to, uh, cope with future pain in a, you know, the healthiest possible way?

Yeah. 

Dr. Adriaan Louw: Wow, you're throwing me a lot of grenades today. So the, um, the easy answer today, the best way to treat a child in pain is to, in a, a very, very nice politically correct way, remove the parent. I mean, Linda, we have enough resources show that how parents behave, drive their kids pain. And I have kids, I love my kids to death, but there's a study that came out.

They showed, they took kids that went through orthopedic surgery as an anesthesiologist, you will appreciate this. And then they tracked these [00:59:00] kids a year out. Hmm. A year later, they classify the surgery as success or not a success based on pain, disability, et cetera. But then they looked at everything they measured around the time of the operation to see could they predict it.

And the number one predictor of children hurting one year later was the parents' catastrophization around the time of the surgery. Oh, wow. And so my message to parents is, chill out. Let the healthcare providers do what they do. 

Kate Colbert: Let's talk about, um, what you heard back. So this, there was this section about pediatric pain that we just played for your listeners.

Tell me what happened after that episode aired and what you heard about that section of the interview. 

Dr. Linda Bluestein: Yeah, definitely. And I'm really happy to get the opportunity to talk about this because when I learned about neuroplasticity, that was such a important turning point for me as well. So I really did want to re-air this episode, even though I did take it down briefly.

There were a few people, a very vocal minority who when they heard the line quote, [01:00:00] the best way to treat a child in pain is to remove the parent. They were triggered by that comment, and I believe that that was triggering because of traumatic experiences they've had in the past. There's a movie called Complicated, which is a fantastic movie and a very important movie about EDS, and really addresses very well the problem that some EDS patients have had and in particular addresses the problem that some parents have had who have been accused of medical child abuse or munchausen's by proxy.

So this is a horrible, horrible thing that has happened to some parents of children with EDS. They may not be diagnosed with EDS yet and are being seen in emergency rooms and clinics where people don't know about EDS and or don't fully understand EDS. They think it's, you know, just a condition where you have bendy joints.

They don't understand the systemic ramifications and how incredibly sick these children can be and. The parents. And I have to say, [01:01:00] it's usually the moms who are taking the children in for these appointments. And so the moms often get accused of munchausen's by proxy or medical child abuse. And it's, it's horrible when this happens.

And there, there's even been cases where the children have been taken away. And so I do wanna acknowledge that, um, these parents have had terrible emotional pain. And I can see now how they could have misinterpreted what Dr. Louw said, but I know for sure his intent and we can share about that in a minute.

Yeah. Um, and I did take the episode down for a few days because I wanted the opportunity to talk more about what he meant and how this was misinterpreted by some people before we broadcasting this important conversation about the neuroscience of pain. Um, and I do believe very, very strongly that what Dr.

Louw shared about noci plastic pain is not only valid, but it's also. Very, very important. And I know from my own clinical [01:02:00] experience that oftentimes having the parents step out of the room for just a few minutes is very helpful. It's very helpful to get to talk to the children separately. And this is something that we do all the time in clinical settings.

This is not, you know, Dr. Louw did not invent that, so, right. You know, he talked about it, he talked about it, and he's, and he's a physical therapist, so it's important to keep in mind that, you know, he's not talking about taking the child away from the parent. He's talking about, you know, when they're in the clinic and the, and the patient and the parent are in the exam room.

You know, I wanna just briefly talk to the child, child, you know, alone. Um, that's what he's talking about. 

Kate Colbert: Yeah. I mean, so yeah. I mean, you're absolutely, uh, uh, right. I actually was recently talking to an EDS patient who lives in the United Kingdom, and she had said that when she was a child before her EDS was diagnosed, um, they didn't have the hospital sort of, um.

Uh, electronic medical records were not sort of talking to each other, even though they're all on a national health [01:03:00] system. And so her mother, every time something was wrong with this patient, her mother would drive like sometimes great distances to take her to a different hospital than where they went last time, so that she wouldn't be accused of taking her to the, the hospital too often or sort of making up these symptoms.

And so I think there is, there is sort of a, a, a global, um, sort of horror happening. And you're right, it usually is the moms who sort of get, get blamed for knowing too much about their kids. Mm-hmm. Health, it, it's a horrible Right. Um, and so, um, but I think what's interesting about the reaction you had from a few people from that episode, and it's hard, it breaks my heart that anybody felt, um, sort of re-traumatized by what they thought they heard.

Um, but it was really interesting that I think it came all the way down to one word when he said remove. Right. Yeah. And so, um, I, I'm a former foster parent and, um. That is the language that is used by child services. So a child is removed from the home, a child is returned to the parent. So words like remove and return when he [01:04:00] literally meant like, can mom or dad step out into the hallway for two minutes?

And I just wanna see if I can't get, um, you know, Johnny or Janie to tell me a little bit more about what they're feeling in their own words, um, without being aided, um, by mom or dad, even though their intentions are really good. And so, yeah, I think that was interesting. Um. So, and, and, and I 

Dr. Linda Bluestein: do wanna clarify that.

He said remove the parent. He did not say remove the child. He said, remove the parent. Right. He said, remove the parent. Yeah. Yeah. 

Kate Colbert: Right. But again, you know, people hear what they think they hear. Right. Um, and their, their trauma and their nervous systems. Totally. And feel what they feel. And so, yeah, this is legitimate.

So I know that you reached out to Dr. Louw and let him know about the controversy, um, surrounding his interview. Um, and he shared a statement which I'd like to go ahead, um, and read. So, um, I've got it, uh, here in front of me. Um. Dr. Louw said, I apologize if my comments upset some of your listeners. That was not my intention.

It always amazes me, but does not surprise me that people can listen to a lengthy podcast or lecture, [01:05:00] and one singular comment triggers them. Unfortunately, this is indicative of the current struggles with chronic and complex pain conditions. People have been treated so poorly that they need to be defensive and advocate for themselves, which I understand.

I have dedicated 30 years of my life to studying pain science, working with people in pain, and trying to be a voice for them. When I present on podcasts, webinars, or conferences, my content is 100% backed by research. The specific comment when seen in context has been extensively studied. So I thought that was really great that he, um, jumped back into the conversation after the fact.

Um, and I hope that those folks, um, who reached out to you with some concerns, um, are listening today. Maybe even you'll reach out to them and send them a, a link to this episode because I think that, um, I, I think what you're doing here, taking the time, um, to talk about that feedback, um, and [01:06:00] to maybe wrap some more context around that, I think is incredibly compassionate.

Um, and, and loving of you to take the time to do it. I think a lot of podcasters would've just been like, well, that's not what he meant. Um, and would've just carried on. And, and the fact that we're talking about that today, I think is really important. It says a a lot about you. There's a lot that goes into podcasting, especially when it's about a medical condition.

And so I wanna give you a lot of credit for not giving up when listeners, um, get critical, um, for working so hard with your guests to contextualize, um, their professional opinions and observations. Um, and to try to make your show as scientifically accurate as possible, and to take the verbal beatings that kind of come along the way, um, on social media and via email, um, when people get upset and then blame you for, for what they're feeling or interpreting about what they heard.

So, man, it's a lot. I mean, I, I kind of wonder, right, so when you were going through all of your intensive training to be a physician, um, where was the training in [01:07:00] podcasting, interviewing in public relations, right. There was nothing, right? I mean, so do you sometimes have days? I, I'm kind of curious, note that you find that the doctoring part of your job is actually the easy part.

Dr. Linda Bluestein: Yeah, definitely. I mean, this whole last couple of weeks honestly has been very, very stressful because I know that you know this, and hopefully most of the listeners know this, that I, I want to bring the best quality information and would never, ever want to invalidate someone's experience. And in fact, somebody who saw that I had taken down the post about Dr.

Chopra's dental comments actually wrote back and said what happened to the post? And went on to share their own experience. And kind of, I think, seemed to think that because I was wanting to make sure that this information was accurate, that they seemed to feel that that was invalidating of their experience.

So I. You know, your experience is your experience, so please do not let anything that you hear on this show, [01:08:00] like question your own experience. You know your body better than anyone. I know a lot of people's bodies. I, I get a window into so much of what they're experiencing, but I still don't know what it's like to live in anyone else's body except for my own.

So, while I have a lot of information and a lot of expertise, um, you know, doing a podcast is very, very challenging and it's hard to have the scientific rigor and to really have the, to. The best guest preparation and make sure that we're doing the editing correctly. Um, there are going to be things that are gonna slip through the cracks, unfortunately, or rub a listener the, the wrong way.

And, you know, that's, I think, kind of the nature of podcasting and I try to minimize that as much as I possibly can. But at the end of the day, I know that as, as a highly sensitive person myself, um, I have to, I have to maybe grow a little bit thicker skin and, and realize that so long as I'm just doing the best that I can, um, you know, try to roll with [01:09:00] things a little bit.

Kate Colbert: Yeah, no, I mean, I think you do a great job and I think that one of the things I loved about your show from the very beginning is that while you know a lot about EDS, you also know that there are subspecialists who are seeing, um, we talked about earlier. So as you're seeing sort of a different subsector of, um, you know, there're seeing the neurologic complications of EDS or the vascular complications of EDS or the GI complications of EDS and, and, and having those experts on your show is, uh, really great.

I think listeners, um, I always tell people when I'm recommending to newly diagnosed folks, um, that this is the best way to have sort of an, it's like a attending an EDS patient conference in an ongoing way that every week they're learning a little bit more. Um, and if they're new, they can go back and listen to 160 episodes and, um.

Pace themselves and, um, and, and that they're gonna learn just so much from you and from your guests collectively. And so, you know, and I, I've been very impressed over the years [01:10:00] by the fact that if you think that something has ever been said on your show that's factually incorrect or even dangerous, which I know is very, very rare, um, that you do your best to challenge the guest or to edit out, um, at an offensive comment.

But because these conversations are candid and relatively unscripted for a reason, I, I know that it's your preference to let the conversation stand for better or for worse, um, and to sort of see how the community reacts. Um, and I think that's important. So I think all of these conversations are important, and I think they make us all a whole lot better.

Dr. Linda Bluestein: Well, thank you for that. Yeah. I'm, I'm proud at the end of the day to have founded the world's leading science-based podcast featuring medical insights about hypermobility, where listeners can count on me to bring important voices to the microphone, to talk about the important issues that patients face with complex conditions like EDS and HSD.

There, there isn't anyone else doing exactly what I do, and I think I'm the exact right person [01:11:00] to be doing this at this point in time. So I'm, I'm grateful for the listeners and for people spreading the word about the podcast. I know that there are medical institutions that have smart phrases built into their EMR, where they share the podcast with patients.

Um, I have smart phrases for all kinds of different things, so that's quite significant. If somebody shares with me that yes, we have a smart phrase where we can just click a button and it tells a. A patient that we just diagnosed with EDS, or we suspect EDS, go listen to the Bendy Bodies podcast. You're gonna learn a lot by going over there.

So I, I really appreciate all the listeners. I appreciate the feedback and I hope to make the show better and better over time. 

Kate Colbert: Wow. I think that's amazing. I think that's the perfect place to end this episode. Thank you every bendy body for listening today, and until next time.

Dr. Linda Bluestein: Well, I'm so grateful to Kate for coming on the show today and playing guest [01:12:00] host. This is such an important conversation to have and I hope that you found it helpful. Thank you for listening to this week's episode of the Bendy Bodies with the Hypermobility MD podcast. You can help us spread the word about joint hypermobility and related disorders by leaving a review and sharing the podcast.

This really helps raise awareness about connective tissue disorders and related conditions. If you would like to meet with me one-on-one, check out the available options on the services page of my website@hypermobilitymd.com. You can also find me Dr. Linda Bluestein on Instagram, Facebook, TikTok, Twitter, or LinkedIn at Hypermobility MD.

You can find human content, my producing team at Human Content Pods on TikTok and Instagram. You can also find full video episodes up every week on YouTube at Bendy Bodies Podcast. To learn about the Bendy Bodies program, disclaimer and ethics policy submission verification, and licensing terms and HIPAA release terms, or to reach out with any questions, please visit bend de bodies podcast.com.

Bend De Bodies podcast is a human content production. Thank you for being a part of our community, and we'll [01:13:00] catch you next time on the Bend De Bodies podcast.

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