82. The Impact of Clinician-Associated Trauma on EDS and HSD with Colin Halverson, PhD

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Linda Bluestein, MD (00:01.038)

Welcome back every bendy body. This is the bendy bodies podcast and I'm your host and founder, Dr. Linda Blustein, the hypermobility MD. This is going to be a great episode, so be sure to stick around until the very end and then you won't miss any of our special hypermobility hacks. As always, this information is for educational purposes only and is not a substitute for personalized medical advice.

Linda Bluestein, MD (00:29.442)

Today, I am so excited to have Dr. Halverson here with me. He received his PhD in Linguistics and Medical Anthropology from the University of Chicago, where he studied communication issues in medical genetics based on field work at Mayo Clinic. At Chicago, he also completed a fellowship in clinical,ethics, and then a postdoctoral fellowship in medical ethics at Vanderbilt. He is currently a professor at Indiana University School of Medicine where he researches, oh dear lord, mistake. He is currently a professor at Indiana University School of Medicine where his research focuses on ethical care for patients with rare disease, in particular Ehlers-Danlos syndrome. Colin, hello and welcome to Bendy Bodies.

Colin Halverson (01:25.706)

Hi, thanks for having me. I'm excited to be here.

Linda Bluestein, MD (01:28.098)

Oh, wonderful. I'm so excited to chat with you. Your research is just so fascinating. And I would love for you to start out by telling us how you got particularly interested in this area of research.

Colin Halverson (01:39.222)

Yeah, so I have been interested even specifically in Ehlers Danlos since I was in grad school. I kind of very roundabout started out thinking that I was going to do pure linguistics when I was in college, but as I got into grad school I got more and more interested in the cultural side of communication and then I had the wonderful opportunity to work with Dr. Laini Ross, who's a pediatric and genetics ethicist, who was previously at University of Chicago where I did my PhD. And she got me kind of intimately involved with all kinds of projects related to genetics. I ended up doing my own research on genetics and communication at Mayo and was primarily involved there in oncology and rare disease. And I've kind of continued down that trajectory ever since. But the primary interest that I had all along was the ethics issues that arise from communication in healthcare settings. And it seemed particularly acute to me, the doctor patient relationship communication issues for patients with rare disease, especially rare diseases like hypermobile Ehlers Dan los

Linda Bluestein, MD (03:02.718)

It's such great work that you're doing because we know there's so much room for improvement and so many challenges that are faced on both sides. I came across your paper, Patients with Ehlers-Danlos Syndrome on the Diagnostic Odyssey, Rethinking Complexity and Difficulty as a Hero's Journey, and thought the term hero's journey so eloquently and accurately describes the path that so many patients find themselves on. Can you tell us more about that research project?

Colin Halverson (03:32.066)

Yeah, that was actually my very first project with Ehlers-Danlos community. Um, and I thought ahead of time, I could have even grabbed the book from behind me, but, uh, um, uh, I don't think, I don't know if I need a prop and I think it might take me a while. But, uh, so the, um, the interview was, uh, I did, uh,

Linda Bluestein, MD (03:43.259)

You still can. You can still grab it.

Linda Bluestein, MD (03:51.067)

Okay.

Colin Halverson (04:00.814)

I mean, at this point I've done, I think, 53 interviews with patients related to their diagnostic odysseys. That original paper was based on just 21 or so of those interviews where I spoke with patients about the entirety of their experience from the very first inklings of symptoms until they got a diagnosis and even beyond. And the...In the analysis, I was coming at that point really out of anthropology and one of the classic works in anthropology discusses what's described as the hero's journey. It's from a lot of research done on folklore, looking at how people narrativize or create narratives around major struggles. And so it seemed to me like it was really relevant. I had plenty of experience reading this very large book about comparative world religions and mythologies and had been thinking a lot, as have many people in medical anthropology, about the narrative qualities of patient stories. And the heroic aspect of the patient stories was probably the most apparent feature from the conversations that I'd had at that point and continues to be. So it seemed very relevant and as we actually started going into the analysis using that construction from anthropology, it did really resonate and I think pull out important features of the Odyssey for these patients.

Linda Bluestein, MD (05:51.69)

Yeah, it's such a common thing that we see. And I think you gave an example when you spoke at the EDS Society that you specifically chose an example that was very typical and not an extreme case, right, which I thought was really smart rather than picking some really extreme case that a lot of people wouldn't necessarily relate to. You chose one that was much more common, very common experience.

Colin Halverson (06:15.834)

And that is definitely all of that comes out of that first round of interviews, the broad scope. I talked to some patients for hours and hours about their journeys. And as I found in a later survey of the global registry, the average time to diagnosis is over a decade for patients with hypermobile Ehlers-Danlos syndrome. So it's not surprising that there are hours and hours of stories, even just getting the really

100 mile view of an individual patient's life.

Linda Bluestein, MD (06:52.746)

Yeah, that makes sense. I wanna read a couple of excerpts from this paper because I think they're just so important. I think people will really be able to resonate with this.

The repeated clinical consultations and persistent uncertainty create a high stress and sometimes antagonistic clinical environment and may cause clinicians and their staff to begrudge these patients and the amount of attention they need. As there is no cure and management often demands an individualized approach and long-term commitment, clinicians may also grow to resent the time-consuming symptom management entailed in the care of patients with hypermobile EDS.

being labeled a difficult patient itself results in worse patient experiences, leaving patients dissatisfied and distressed. Clinicians may discharge difficult patients prematurely, refer them to a psychiatrist without cause or avoid them completely. In these ways, patients are prone to problematic provider relationships, which can ultimately be detrimental for everyone involved. Many patients deeply desire a diagnosis to bring an end to their uncertainty.

even when it would entail a disabling or grim prognosis. Their odyssey is typified by doubt and distress. I think so many EDS and HSD patients have found themselves in an antagonistic relationship with their healthcare professionals, and probably can really relate to those paragraphs out of that paper. What can patients do if they have an antagonistic relationship with someone that they're trying to work with?

Colin Halverson (08:29.426)

I mean, if at all possible, find a different provider. I think it can be worthwhile.

with specific experts or in rural settings or low access settings to go through the stress of trying to repair a relationship. But if you're in a more resource rich setting, I think it's very reasonable just to move on. I think the Odyssey itself and even just interfacing at a baseline with the healthcare system can be so stressful.

especially for someone who's already suffering from health conditions, that you don't need to stay with a clinician. You're not obligated to stay with a clinician who isn't treating you well.

Linda Bluestein, MD (09:20.254)

Yeah, no, that makes sense. And also, another thing I wanted to read from this paper, despite the presence of earlier symptoms, that at the time were not worrisome, the transition into unbearable and chronic pain and fatigue was described as cataclysmic. I thought that was so fascinating because that describes so many people's experience, including my own. Did you find certain things that led to those transitions most commonly?

Colin Halverson (09:47.682)

Yes, I can't speak to the statistics of it. This is just anecdotal. And it is something that's really interesting to me too, that I would like to investigate kind of more systematically. But the majority of the patients I've spoken with have, I mean, it's not a huge majority, but have had some, what I've been thinking of as triggers. In genetics, in oncology, people talk about the two hit theory for cancer, where you have...

Linda Bluestein, MD (09:52.415)

Of course.

Colin Halverson (10:16.706)

first a genetic predisposition, and then you have some kind of environmental trigger that actually causes the proliferation of the bad health outcomes. I think my guess is for a lot of people there's something similar for Ehlers-Danlos. Not that the symptoms aren't already there, but there can be a trigger that transforms symptoms that had been manageable to a point into something that is...

life altering or life limiting and then kind of forces the patient into the diagnostic odyssey. So some of the most common ones of those, a lot of people I've spoken with were very athletic as children, maybe even into young adulthood, but not knowing that they have a connective tissue disorder, they're not necessarily undertaking behaviors that are always the safest for them.

So I've heard a lot of stories about people having some kind of physical trauma that then pushes them over the edge where all of a sudden, oh right, I have been in pain kind of for a long time now. Another thing that is I think less common but also important and interesting, especially if we're thinking about kind of a moving past.

biomedical model into a biopsychosocial model of health. And that is a lot of patients seem to manage their chronic symptoms well enough until they have some...

Colin Halverson (12:02.134)

some kind of social trauma as well. Like I've talked to people who were doing well enough until their mom passed and then a major source of their support's gone, or they have a divorce, or their child gets sick too. And all of a sudden, something that they were able to do before when they didn't have those other pressures or emotional stressors is no longer something that they can simply

avoid thinking about or avoid dealing with.

Linda Bluestein, MD (12:36.286)

And amongst my patients, I've seen quite a few that have had either an illness or a viral illness, for example, COVID, or they've had a concussion, which I guess does fall into the category of trauma. Did you see that as well?

Colin Halverson (12:53.782)

Yeah, I heard several times about Epstein-Barr too, similarly. Um, I think because of the overlap with, uh, things like mast cell too, it gets really complicated to figure out, uh, what's the before and what's the after, um, for the onset of these types of issues and what's a, what's an infection or what's like, uh, a temporary, uh, circumstance.

Linda Bluestein, MD (12:57.322)

Yes.

Colin Halverson (13:23.734)

and what's something that's actually more enduring.

Linda Bluestein, MD (13:28.386)

That makes sense. And speaking of symptoms, one of the terms that you used, another term I really liked was panoply of symptoms. Can you tell us what that means and why, especially in the case of people with EDS or HSD, why this is so important?

Colin Halverson (13:44.118)

Yeah, so this is also still drawing on some of the jargon from the anthropology world. The panoply of symptoms is a part of what in the hero's journey people talk about as the road of troubles, the road of challenges, and so this is part of the very long diagnostic odyssey for these patients.

The thing that really struck me with these patient interviews was just how many, not just symptoms, but also diagnoses, misdiagnoses that they'd received along this path as well. It's not terribly surprising. I think that your run-of-the-mill clinician isn't immediately jumping to Ehlers-Danlos for patients who have a lot of these types of symptoms. And so they end up getting all...

Many patients with HEDS have a really broad diversity of symptoms. And so they end up with a huge number of misdiagnoses, potential comorbidities. And as they sit without a diagnosis and without their chronic pain and other symptoms being managed appropriately, their health worsens as they await their diagnosis.

And so all three of those things combined is where I was kind of going with the term the panoply of symptoms.

Linda Bluestein, MD (15:22.538)

Yeah, I can definitely relate to that, but both personally and professionally, you know, you kind of, if you go into an appointment and you start saying, well, I have this pain here, and then I have this, these GI symptoms, and then I have this other thing going on. And you can kind of see sometimes your physician just kind of get a little glazed over and just, you know, isn't listening anymore, because they don't have familiarity really with things that could cause multi systemic symptoms. And I think that's frustrating for people.

Colin Halverson (15:55.69)

Yeah, I do think it's very frustrating. And I think that is also one of the major causes for the initial skepticism, distrust in the doctor-patient relationship on both sides, where a patient comes in with more complaints than the clinician can manage, or complaints that are outside of the clinician's expertise. And so that immediately

sets a clinician on edge and then the patient who has multiple aspects of their health that need addressing and then fewer and fewer of those end up getting addressed. One of the other studies that I've done with patients is looking at the use of numeric pain scales and how frustrating it can be to constantly be asked to reduce an experience that's as multi-dimensional as chronic pain.

to a single digit and then often feel like that single digit doesn't actually affect their care anyway, despite that being one of their most repetitive tasks. And I think there's something similar in that regard as well where with, I mean, maybe this is just compounding, where you have a connective tissue disorder that is kind of

as definitionally multi-systemic as you can imagine. But then you're also, the primary complaint of patients with HEDS is chronic pain. And chronic pain is also one of those things that can't be limited in the way that clinicians really want it to be, to move forward with potential options for management.

So when you talk about chronic pain with the number, are you talking about something in terms of its quality, its duration, its location? What if you have multiple pains that are all disabling? Et cetera.

Linda Bluestein, MD (18:07.806)

Yeah, I hate the visual analog pain score and I'm an anesthesiologist. So, I mean, this is something that I definitely am used to asking people, but I feel like it is, I don't ask it really anymore because I like to focus on function. And to me, that's the most important thing is, you know, how is this pain impacting your day to day life and how is it impacting your enjoyment of life? So I often use something called the PEG.

which asks about your weekly average pain score and then how much it interferes with your everyday enjoyment of life and then how much it has interfered with your general activity.

Colin Halverson (18:45.094)

That's fantastic.

Linda Bluestein, MD (18:46.282)

Yeah, so I like the peg a lot better than just asking that one number because I feel like that's really not very helpful. And you're absolutely right. I go in for appointments, they'll ask, what number pain are you having right now? And then you feel like nobody does anything with that information anyway.

Yeah, it's very frustrating, very, very frustrating. And, you know, it's so, pain is such a highly individual experience. Nobody else can feel what I'm feeling, what you're feeling, what anyone else is feeling. So putting a number on it like that, I think, kind of, yeah, it reduces it to what we should all be on the same scale and we should all be experiencing it the same way.

So was your research dealing really specifically with people with hypermobile EDS, or did you deal at all with people that have hypermobility spectrum disorder as their diagnosis?

Colin Halverson (19:40.594)

Yeah, this is a great and really important question. My research almost entirely has only been on hypermobile Ehlers-Danlos. This is something that is a problem with, it's a limitation of my research and it's a limitation of the state of research into the psychosocial dimensions of Ehlers-Danlos and connective tissue disorders in general. There really has not been a sustained effort by anyone

to look at other forms of EDS and HSD in terms of patient experience. This is something that I'm actively trying to correct. I'm currently running a study looking at other forms of EDS, doing the similar kind of a diagnostic odyssey interview that I did four years ago when I started this project. I would, if you have, if I can put a shout out.

Linda Bluestein, MD (20:39.146)

Yes, please.

Colin Halverson (20:40.834)

with any other form of Ehlers-Danlos syndrome are interested in doing this type of a conversation with me, please do reach out. I'm sure my email will be available. That's the best way to get ahold of me. But yeah, that is a real shortcoming, not just of my research, but I think in general, there is not that information at this point about how different experiences really are for patients.

Linda Bluestein, MD (20:52.824)

Yes.

Colin Halverson (21:10.03)

who don't have HEDS. And I think that's particularly important because HEDS is such a, the number of patients with HEDS is so much higher, at least with the diagnosis, than these other forms. And so there's a, I think it's a real disservice at this point to not understand what the differences and similarities actually are between these types of experience.

Linda Bluestein, MD (21:38.934)

Do you think at some point there will be similar research on people with HSD? I know it's a little less well defined, so maybe there's some additional challenges on that type of research.

Colin Halverson (21:51.562)

Yes, I think there probably are additional challenges in terms of publication, but there shouldn't be any real differences or difficulties in terms of the actual studies or the study design. I know from my research that trying to publish about hypermobile Ehlers-Danlos syndrome always comes with a reviewer asking, how do you actually know that these patients have the diagnosis? And so

I mean, there's so much gatekeeping with what constitutes a good diagnosis, who's allowed to give a good diagnosis, what type of clinician, what specific clinician. And I imagine that would be a problem on that end of an HSD project as well.

Linda Bluestein, MD (22:39.318)

Yeah, I think most people probably don't realize how incredibly difficult it is to conduct research, how many hoops you have to jump through, and how long it takes, right? I mean.

Colin Halverson (22:50.53)

Yeah, it does take a very long time. But it's a labor of love. I really enjoy what I do.

Linda Bluestein, MD (22:58.606)

That's amazing. I wanna read another paragraph from one of your articles. All patients described a failure of empathy in the patient provider relationships prior to their diagnosis. They encountered clinicians who lacked the knowledge necessary to provide an accurate diagnosis. They also encountered clinicians who doubted the reality of their symptoms. This doubt often led interviewees to question their own experience.

Sometimes it led to iatrogenic causes. Mistake. Sometimes it led to iatrogenic cases of depression and anxiety, as well as fear of returning to the clinic where they worried that they would only continue to be disbelieved and dismissed. This antagonistic relationship with providers is only one aspect of the overall journey patients undergo. How did you see this failure of empathy impact patients?

Colin Halverson (23:56.394)

uh just enormously. It's so sad and it's so pervasive. Uh I mean one thing I think is the isolation. This is probably the saddest aspect of it is the isolation that patients feel as a result of that. Um if uh your listeners get nothing else out of this interview I hope that they do hear that this is um functionally everyone.

Linda Bluestein, MD (23:58.484)

Mm-hmm.

Colin Halverson (24:24.098)

with EDS has this experience. 85% of the patients I've spoken with have some kind of trauma-like response to the clinical care that they've gotten, or lack of care, I guess is a better way of putting it. The other thing that I wanna say in terms of the heroism of the journey is, while...

this is a really critical issue for patients. The patients I've spoken with about these types of negative encounters and traumas, the vast majority of them still describe their clinicians who have done these, who've acted poorly, inappropriately, done poor things in terms of their care. The patients still...

describe their clinicians as fundamentally good, in the words of Anne Frank, mistake, don't use that, that's awful. But patients still describe their clinicians as fundamentally good, and see the problem primarily arising from clinicians who are undereducated, misinformed, overworked.

or have their own stressors rather than as clinicians who are actually trying to cause harm. However, that doesn't mean that they aren't causing harm. They absolutely are causing harm. The article that we published last spring in March 2023, I think, about clinician-associated

Colin Halverson (26:18.902)

outcome focuses on not just the psychological consequences of these negative encounters, which I think is much easier to grasp, but the also physical health adverse outcomes that directly result from these bad encounters as well. So we found that...

a large percentage, I think in the 80s, of patients have had some kind of clinical care go wrong because their clinicians aren't treating them seriously, aren't taking their understanding of their disease seriously, aren't treating their diagnosis seriously. And as a result of that, we also saw a lot of patients, again, in the 80s, say that they had avoided clinical care altogether.

And so that means that their chronic symptoms weren't being managed at all, at least for a period of time.

Linda Bluestein, MD (27:24.046)

And I'm glad that you mentioned the more recent paper because that was also really outstanding. And there you do talk specifically about how patients end up with having less trust in the healthcare system and also less trust in themselves. And yes, definitely ultimately leading towards health outcomes. And by the way, I will have in the show notes linked both of those papers and your contact information for sure. So people can look for that there.

So in terms of those worse health outcomes, what can we do to avoid that? And especially the trust in ourselves, like I feel like that's a really important piece that perhaps we might have more control over.

Colin Halverson (28:06.074)

The trust in yourselves is the thing that worries me the most. Again, I think it's much more, at least from the outside coming into this project, the idea that having these repeated negative encounters would lead patients to doubt their clinicians or lose faith in the healthcare system was not terribly surprising to me. I think the percentage was still kind of striking. But the...

self-doubt that patients have expressed to me is really worrisome. In particular, that's because this isn't just patients feel like they can't describe their pain, can't describe their disability, can't describe their trajectory to other patients or other loved ones or their clinicians. But they also start to doubt whether those...

private experiences like we discussed before of pain are even real in the first place. And that I think is really worrisome because if you don't believe your own experience of your internal states, of your private states like pain or fatigue, no one else can tell you what that actually is. And so you've lost your only access point and your clinicians also lose that only access point.

Um, so.

I mean, I think for a lot of people, the way that they come back from that self doubt is through other people trusting and validating their experience. I don't know that that's a great recommendation because I know for a lot of people, the doubt doesn't just come from clinicians. It comes from kind of in surround where there's doubt from family members, spouses, children.

Colin Halverson (30:08.714)

So it can be really challenging. I don't think it's fair or it's not an easy ask to say find a community. But that does seem like that is the primary way that other patients have come to triumph over that self doubt.

Linda Bluestein, MD (30:33.759)

Yeah.

Colin Halverson (30:33.914)

One thing along those lines that I will also say is I'm currently running a study on social media use. I'm analyzing the data at the moment. And while there are certainly a lot of problems with the information that you can find on Instagram or TikTok, there are one real thing is that there's a community on Facebook especially, but kind of all over the place. And

through and since it is a rare disease, I think it can also feel really isolating if you don't know someone in person, but if you feel isolated you can meet people online who have the same experiences as you who aren't gonna doubt that you that you're in the pain you are, that you can or can't do the things that you say you can or can't do. And I think that can be really affirming and could possibly be a real way to

get out of this spiral of self-doubt as well. Obviously with the big caveat that there's plenty of negative spaces on social media too, but a community does exist.

Linda Bluestein, MD (31:45.566)

Yeah, that's that self doubt. I can totally relate to that when I was at kind of at my lowest point about a decade ago. And I was having so much trouble with at that point, it was my knee. And my orthopedic surgeon actually yelled at me and I was still working as an anesthesiologist at the time. And I was in the doctor's lounge and in front of a room full of people. He said, there's nothing wrong with your knee. I looked inside your knee and it's fine.

And I basically went into the locker room and cried and was like, but it hurts. Like it hurts a lot. And he had just done my knee scope like a few days earlier. And I should have known as a physician, like he couldn't look inside the tissues and see what was going on. And I had a big bone bruise inside my femur. And so he couldn't see that, but even though I'd seen that on the MRI, but I still started to doubt myself. And...

I think just so often, you know, we kind of, if people are in a position of authority and they tell us, no, you're fine, there's nothing wrong with you. I think we do just start to think, well, maybe it is me.

Colin Halverson (32:55.538)

I'm really sorry that happened to you.

Linda Bluestein, MD (32:58.518)

Thank you. It was it was hard.

Colin Halverson (33:01.686)

It's very disappointing. And I mean, it's exactly those kinds of interactions that make you wanna stop going.

Colin Halverson (33:15.814)

that.

Yeah, the authority is a huge part of it. Clinicians wearing their white coats, I think, have an oversized influence on people's perceptions. The other thing that I think is really striking about the story, about your story, is how otherwise obvious your suffering was to you. That kind of pain isn't something that you just...

forget about or dismiss otherwise. It does take that dismissal from other people to kind of provoke that self doubt. I've spoken to women who have kind of like constant stomach pain or something like that. And because of this dismissal and because of the invalidation that they experience, including from partners,

they end up just thinking like, well, either I'm a wuss or like, you know, and everybody experiences this pain. Everybody's like constantly in stomach pain, just like I am. Uh, or like, uh, you know, I think maybe even more insidiously, maybe there is some kind of unconscious, um, motivation.

Colin Halverson (34:41.803)

both of which are very, very unhealthy thoughts to have about your own private experience.

Linda Bluestein, MD (34:52.786)

And even sometimes you hear these things in places where you certainly wouldn't expect to. So I actually was with a family member at a, I won't name the facility, but at a major medical institution. And they had a pain program, pain management type program. And they basically said to this group of people, well, everyone deals with on average five symptoms at any given time.

I was like, really? Cause pretty sure this group of people who are here for this program and are paying a lot of money, by the way, to get help and improve their quality of life, pretty sure that they are experiencing a lot higher symptom burden than the average person walking around, working a job, able to socialize with their friends. Like, I think it's dramatically different.

Colin Halverson (35:47.758)

Yeah, absolutely. And it's also kind of like obviously different because otherwise those other people would also be trying to or, you know, to some degree, some of them would be trying also to reduce that burden.

Linda Bluestein, MD (36:01.942)

Yeah, exactly. And that minimizing of, you know, it can't be that bad and things like that is just really, really harmful. So I would love to, I love the term clinician-associated traumatization. I feel like that's a very well-thought out terminology. And how does that differ from other constructs like PTSD, medical trauma, or medical gas lighting

Colin Halverson (36:12.109)

Absolutely.

Colin Halverson (36:31.73)

Great, thank you. I appreciate that you like that. It was definitely a committee effort to come up with that term. So I am not a clinician. I am just an anthropologist and a bioethicist, but I consulted with a bunch of folks from psychology and psychiatry in working through that data, the data from those interviews on trauma.

And initially I thought it would, the experiences would be better captured by an already established construct like PTSD. Several of the patients I've worked with do have clinical PTSD diagnoses or complex PTSD or medical trauma is another term that people use. There's a lot of, my understanding is that there's a lot of debate in terms of

how those constructs do or don't overlap, how they're similar or not. But the primary reason that we felt that the patient's experiences from our interviews did not, was not fully or perfectly captured by these other diagnoses is that twofold. One, the other diagnoses require really one diagnosis

like technically require a trigger where the patient has an actual brush with death, some kind of encounter with mortality. And certainly that is the case for many of our patients, not all of them. And yet all of them have these types of experiences. So that felt like that wasn't quite sufficient. And then the other thing is with terms, for instance, like medical trauma, people...

What that really means is, for instance, like you wake up from anesthesia in the midst of a surgery and you're having some kind of a physical procedure that causes you to have a psychological response. That is, again, not what we were finding in our studies, that the trauma was emerging directly from the interpersonal dynamics, these interactions with their clinicians, not because of a specific procedure. Again,

Colin Halverson (38:55.814)

Plenty of our patients also had that too, but that wasn't the source of this specific type of trauma that to some degree all of our participants expressed.

Linda Bluestein, MD (39:11.846)

Okay. And this research is so fascinating. What along the way has been most surprising to you?

Colin Halverson (39:21.138)

Um, what has been most surprising to me? Uh.

Colin Halverson (39:29.858)

I think I've already kind of, I don't know if this is actually gonna be, can we have like multiple possible answers to this? So one possible answer is the charity that the patients I worked with show towards their clinicians despite all this negativity that they've been the recipients of. I do think that is wonderful.

Linda Bluestein, MD (39:36.586)

Yes, of course, of course, multiple.

Colin Halverson (39:58.618)

and surprising. I also appreciate that the patients I've spoken with have all been recruited from clinic. So I've had a sort of biased sample because all these patients haven't given up entirely on biomedicine. So I do think that that's part of it, but I nonetheless have found that really heartening and interesting.

Colin Halverson (40:23.846)

The self-doubt is another aspect that's been really surprising to me, and it's gonna be the focus of my next study. The privacy and isolation that patients with disabling conditions, disabling forms of Ehlers-Danlos Syndrome experience, I think builds into that, and that isolation broadly has been really surprising to me. I've worked with rare disease for over...

decade now and I've talked to families with patients who've had the only diagnosis of their condition in history. And so with something like hypermobile, and I guess this is something that I'm really seeing with the social media study too, is the invisibility of the disorder.

Meaning that it's not, for a lot of patients, it's not immediately apparent to someone who doesn't know them, that they're in their, in chronic pain or that they are, experience subluxations, et cetera, and at a kind of like alarming rate. That invisibility, I think, compounds the isolation and that's also been very surprising to me from the outside.

Linda Bluestein, MD (41:53.238)

And for people who have experienced clinician-associated traumatization, what can they do?

Colin Halverson (42:01.05)

So there are no evidence-based studies yet to say what is the best modality to manage it. I have several thoughts. First and foremost is get a trusted team. If you're capable and you live in a place, I guess with some of the virtual visits, this is changing now too. But get it, you know.

get rid of the clinicians you don't like, find different clinicians you do like, utilize the community, that people living around you who have Ehlers-Danlos know who the good doctors are, you can talk to them and find knowledgeable, trustworthy clinicians. And if you don't know people, you can, like I said, go online to the Facebook communities. They seem like they're very well moderated and can help you in that regard.

The other thing is, so the one definite thing I've heard from a couple patients is trauma therapy. One woman told me that without trauma therapy, she wouldn't have been able to do the interview for that particular study, even just a year before. She said she would have broken down crying and not been able to get through all of the, and she was like very candid with me. So.

Clearly that's been incredibly helpful for her. I don't know for a fact that anybody has done research on that yet, but that is one thing that I got some emails from folks in England after the publication came out saying that they were interested in looking into that. So I don't know if that's where that study is at or if that's actually being conducted, but that's optimistic, I think. Then I've also heard from

clinicians working with, so therapists working with patients with CAT-like, clinician-associated traumatization-like symptoms, who say that EMDR has been really useful. I think that's very positive. That's one of the things that was actually recommended by one of our psychologist consults as well as we're analyzing the data.

Colin Halverson (44:26.398)

And then cognitive behavioral therapy also seems like it's a good potential avenue. And I will also add that the trauma doesn't have, you know, like those things can help manage the trauma, but also like chronic pain is a miserable thing to live with and getting psychological support. Not just, not just in thinking about like the trauma, but also thinking about just

the day-to-day chronic pain can also be really helpful.

Linda Bluestein, MD (45:01.278)

Yes, I recommend to basically all of my patients that they work with a counselor or therapist. And the way I explain it to them is you deserve to have a counselor or a therapist. You deserve to have this person as part of your team. They're absolutely essential.

Colin Halverson (45:19.254)

I love that. I 100% endorse that. I think everybody with HEDS or no disorder would benefit from mental health support.

Linda Bluestein, MD (45:30.666)

Yeah, I actually interviewed a psychologist yesterday and she was making reference to her therapist. And she said, probably a lot of us, a lot of people probably think that therapists don't have therapists. And she said, even though we know a lot of the what, it still helps to have a person that you can talk to about things. So I thought that was really great that she shared that during an interview. So I think a lot of people will benefit from that.

Colin Halverson (45:57.074)

Definitely.

Linda Bluestein, MD (45:59.271)

Where do you want to go next with your research?

Colin Halverson (46:03.018)

So I already alluded to this a little bit. I have two primary directions that I want to go next. One is looking at self-doubt. That I think is very concerning to me. And I think there's... it's also like the least clear thing to me. In the initial round of interviews we came up with probably like a dozen topics that we thought needed further...

exploration and all of them we kind of had a clear roadmap for how we would go about doing that. And the self-doubt I haven't felt comfortable pursuing until really now like only after four years of working with the same cohort, you know, reading absolutely everything that comes out about Ehlers-Danlos syndrome. Do I feel like I've got enough of an understanding of the context to do that topic justice?

So that's one thing. And then the other direction that I also kind of hinted at is I think it's really critical that we start doing research on patients who don't have hypermobile Ehlers-Danlos syndrome as well. And so the other portion of my project, which is sort of, it's still actually, technically it's ongoing, but I need a lot more patients with the rare forms of Ehlers-Danlos syndrome to enroll as well, because I think...

already from the patients I've spoken with, there's real differences in the diagnostic course and the care that they receive.

Linda Bluestein, MD (47:42.846)

and we will be sure to include your email so that people can know that is that the best way to get a hold of you or? Okay, maybe you can give it to us now too and I'll also have it in the show notes.

Colin Halverson (47:49.646)

Yes, thank you. I appreciate that.

Sure. Yeah, you can reach me at chalv, as in Victor, E-R, at iu.edu.

Linda Bluestein, MD (48:07.122)

Excellent. And if somebody reaches out to you and they decide they don't want to participate, I take it that's completely there. Like, they should reach out to you if they have any interest at all. And then they can decide. Yeah.

Colin Halverson (48:14.962)

Totally. Yeah, any interest at all, if you know someone, if you wanna talk about something else, there's, yeah, it's not, I'm happy to chat with anybody. So, and there's obviously no commitment. You can drop out mid interview if you want to. I've definitely had patients feel emotional and want to come back to a specific topic later, which is very fine.

Linda Bluestein, MD (48:45.346)

Okay, that's great. We definitely need more people involved in this kind of research because it's so important and it benefits the community at large. So I'm so glad that we can help spread that word. Okay, what do you wish that I had asked?

And I didn't.

Colin Halverson (49:06.61)

I don't think there's anything. I think that's a great question. And I think we covered all of the major issues, I think, related to the diagnostic odyssey. So I really appreciate this opportunity to share my work.

Linda Bluestein, MD (49:19.327)

Okay.

Linda Bluestein, MD (49:23.174)

Of course. And of course we have to end with a hypermobility hack. Do you have a hypermobility hack for us?

Colin Halverson (49:31.542)

Yeah, I think, and this might just be because of where my headspace has been at for the last few months as I'm doing the analysis for the social media interviews, but I really think that having trustworthy team of clinicians makes such a difference. And people in, on the research side of medicine, talk a lot about trust in clinicians, but I think that that's the wrong framework.

I think you need to trust your clinicians, but what you need isn't for a clinician to build trust with you, but for you to find a trustworthy clinician. And so the hack, which I've hinted at before, is go to your, find your community. Your community will help you build this team of clinicians. And I think it's good not just

to have one trustworthy clinician, but really to have a team of diverse clinicians who all are trustworthy because relying just on one PCP to tell you everything you need to know about your cardiac issues is obviously not sufficient.

Linda Bluestein, MD (50:49.502)

Yeah, that definitely makes sense. And thank you for sharing your email address. You also, can people also learn more about you online as well?

Colin Halverson (50:58.146)

Yes, I do have a pretty active website through IU, Center for Bioethics. And if you go there, you can see all my latest publications and talks and things like that. It also has my email. You're welcome to get in touch with me that way. I technically have a Twitter or X account, but I have to say I almost never check it anymore. So you can try to reach out that way and I'll...

Linda Bluestein, MD (51:23.138)

Sure.

Colin Halverson (51:27.77)

look at that probably once a month.

Linda Bluestein, MD (51:29.986)

Well, we will definitely make sure that we link your website and also your papers and your email address all in the show notes so people have easy access to that. So you have been listening to the Bendy Bodies with a Hypermobility MD podcast and my guest today was Dr. Halverson, professor at Indiana University School of Medicine, where he focuses his research on ethical care for patients with rare disease, in particular Ehlers-Danlos syndrome.

Dr. Halverson, thank you so much for coming on the BendyBodies Podcast today. And thank you so much for your incredible research.

Colin Halverson (52:03.782)

Thank you for this wonderful opportunity. I really appreciate it.

Linda Bluestein, MD (52:06.911)

Absolutely. It's so great to chat with you.