Told You’re “Too Sensitive”? It Might Be ADHD, Autism, and Hypermobility with Jessica Eccles

[00:22] Dr. Linda Bluestein: Welcome back, every bendy body, to the Bendy Bodies Podcast. I'm your host, Dr. Linda Bluestein, the Hypermobility MD, a Mayo Clinic-trained expert in Ehlers-Danlos syndromes dedicated to helping you navigate hypermobility and live your best life. I am so excited to speak with Dr. Jessica Eccles today. Dr. Eccles is an award-winning neurodevelopmental psychiatrist and researcher specializing in the links between the brain and the body, and particularly joint hypermobility. Dr. Eccles is a wealth of information, so I know you're really going to enjoy this episode today. As always, this information is for educational purposes only, and it's not a substitute for personalized medical advice. Stick around until the very end so you don't miss any of our special hypermobility hacks.

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I'm so excited to be here today with Dr. Jessica Eccles, who is an incredible expert in the space of hypermobility, connective tissue variants, neurodiversity, and so many amazing topics that are so critical to this audience. This is our third conversation with Dr. Eccles, and I know that the first couple of conversations were, at least for a very long time, among the absolute most popular episodes of the Bendy Bodies Podcast. So it's a real honor to have you back.

[02:22] Dr. Jessica Eccles: Oh, it's a real pleasure to be back. Thank you so much.

[02:25] Dr. Linda Bluestein: Of course. So I have to say, in preparation for this episode, I was looking at more recent articles that you've published. Oh my gosh. You're talking about so many different fascinating things. We're talking about, of course, neurodivergence, hypermobility, chronic pain, fatigue, all these things where people are being told that it's all in their head, and the difference between things in the body and things in the brain. It was also really interesting because I will be soon interviewing Dr. David Nutt and Lucy Stafford. I'm going to talk to them about psychedelics.

[03:09] Dr. Jessica Eccles: Yes, because Lucy was my master's student and she was working with David Nutt on medical cannabis for EDS. She's now our PhD student at Brighton and Sussex Medical School, and she's working on a technique called micro-neurography to look at single nerves as a measure of autonomic nervous system function in postural tachycardia syndrome and hypermobility.

[03:29] Dr. Linda Bluestein: Wow. That's amazing. It was funny because I didn't think there was necessarily any connection between the three of you. I knew there was between the two of them, since he suggested that she also be a guest on the same show. But then I found an article that the three of you published together on medical cannabis. So you are doing so many great things, and it was like, okay, where do we start?

Maybe we start talking about people being so misunderstood and the distress that they experience. I feel like this is just such a common thread through the work that you're doing. People are often misunderstood when their distress is intense, embodied, or hard to categorize. Do you see that as one of the central issues for people with connective tissue variants — I love how you call it connective tissue variants — postural orthostatic tachycardia syndrome, et cetera?

[04:29] Dr. Jessica Eccles: I think that this is absolutely pivotal. So there was the Halvorsen paper a couple of years ago about clinician-associated traumatization in EDS. And I give a fair number of talks — in fact, last year I might have given 50. One of my new talk styles is to talk about some of the things that I was interested in before I became interested in psychiatry.

In medical school in the United Kingdom, it's different than in the United States. In the US, you do an undergraduate degree and then you do medicine afterwards. Here in the UK, we go into medical school when we are 18, and it's an undergraduate degree, but it lasts about 6 years. One of the things that certain medical schools do is let you do a little mini degree in the middle. I did one in a relatively unusual topic called the History and Philosophy of Science. This was back when I was at Cambridge University, and I found an old essay that I had written back in those days of being a slightly pretentious undergraduate. It was about the social construction of healing, and it basically said that for a coherent doctor-patient relationship — for healing, which I use in a grand sense, to happen — you need to have a shared narrative, a shared framework.

And I think for so many hypermobile people, this is what they do not get. They go and see a doctor, they go and see any number of professionals or educationalists, and many of them, unfortunately, basically hear back: "I don't understand your story, therefore it cannot be real. This must be somehow in your head. This must be somehow anxiety or functional neurological disorder."

What is so transformative, and what I hope the research that we are doing — particularly at Brighton and Sussex Medical School — is helping to provide, is a framework that both seems coherent and makes sense to patients. And also, by doing this research and by trying to educate other doctors and clinicians and the public, there is a shared narrative. I think that is really important because without that sense of trust, of being listened to and being believed, I don't think you get very far in medicine. There needs to be a shared framework and a shared language.

This is why hypermobility and variant connective tissue is so interesting — because they involve both the body and the brain. The work that we are doing is connecting all sorts of things that seem in some ways quite disparate: anxiety, chronic fatigue, ADHD. You might think, well, how are these all interrelated? But by providing this framework, you are able to say to patients — and I am a patient myself — that you haven't actually got 10 or 12 different perplexing problems that no one understands, that seem random, that you might be making up. In fact, there is this unifying framework. You are built differently, and by being built differently, you may be more likely to be able to do certain things — like dancing, or you may be particularly good at playing certain piano pieces. But at the same time as having those strengths, you are also more likely to have a particular constellation of challenges.

What we are really realizing is that there is so much more we need to know, because I think the work that we are doing is really just the tip of the iceberg.

[09:05] Dr. Linda Bluestein: Yes. I agree. And I interviewed Dr. Halvorsen for the podcast, so we're going to link that. We'll also link that paper in the show notes that you just mentioned, because that's a really important paper. I've used it quite a bit in my presentations as well. It's important for people to be aware of and know that, for better or for worse, they're not alone in having had these traumatic encounters. And if we can really improve that, I think that's going to be something really helpful for so many people.

You've published on some interesting topics like rejection sensitivity, masking, chronic pain, fatigue, autism, and borderline personality disorder. I'm curious what ties those together for you.

[09:48] Dr. Jessica Eccles: Ah, well, what ties them together — now I must caveat, the idea of borderline personality disorder is a somewhat contentious construct that I don't necessarily agree with, but it is a diagnostic terminology. All of those things are linked, as I think almost everything is, with variant connective tissue.

Rejection sensitivity is a very interesting topic in that it's really exploded on social media. I remember first reading about it in Hallowell's book Delivered from Distraction, which was a book about ADHD. In the book, he describes one of his patients basically waiting for what fresh horror is going to happen next that's going to take the rug out from underneath his feet and make him feel awful — and that this is how he lives every day.

When we started looking into rejection sensitivity, it actually turns out that rejection sensitivity is not specific to ADHD. The previous research looks at rejection sensitivity in autism as well, and also in self-esteem issues and in depression. I do not think rejection sensitivity is specific to ADHD, but for people with ADHD and neurodivergent people, one of the things people typically describe as hardest is emotion regulation. Even though we think of ADHD as a difficulty in focusing — when in fact it's actually a difficulty in switching focus, not necessarily in focusing itself — one of the things that adults in particular would like to change the most about ADHD is this rollercoaster of emotions.

And it takes me back to what I was saying about the shared framework. When you talk to patients about rejection sensitivity — whatever their diagnosis, and it could also be related to trauma or self-esteem problems — it is something that some patients really seem to identify with. This feeling of being profoundly upset, disturbed, depressed by the thought of actual rejection or perceived rejection.

When we started looking into it, we noticed that although lots of people are talking about rejection sensitivity, there is very little understood about it. In parallel, we have been doing two projects, one of which is now published — by Annabelle Smith, Beth Sutton, and Lisa Quatt — a qualitative exploration of rejection sensitivity. With Rebecca Gazett and Lisa Kuo, we are also doing some quantitative work, which is very interesting.

The big finding that I found most interesting in the rejection sensitivity paper was that this experience of rejection sensitivity is basically an embodied experience. The people that Annabelle talked to — whilst I was there — said that this feeling of rejection was like a punch in the chest, that it was like having a chair pulled out from under them. And it just goes to show that what we think of as a psychological construct — difficulties related to self-esteem and relating to other people — we cannot separate from the bodily experience.

This links to the very early work that we did in hypermobility and anxiety and autonomic dysfunction — what you might see in postural tachycardia syndrome — which showed that a hypermobile person may be more likely to be neurodivergent. A neurodivergent person, for a number of reasons, may be more likely to be traumatized. And this hypermobile neurodivergent brain-body, because of the reactivity of the autonomic nervous system, may then process trauma differently, more acutely, leading to this embodied phenomenon.

The reason I think this is important is that especially for a lot of people who have difficult relationships with their bodies and their brains — there is this idea in neurodivergence of alexithymia, which is this difficulty recognizing and understanding emotions. We have also been working for many years, particularly Hugo Critchley, Sarah Garfinkel, and Lisa, on the idea of interoception — the inner sense of what is happening in your body.

For those of us who have complicated relationships with our bodies, you know, bodies that are prone to letting you down, actually the body might be the way in to integrating the brain and the body. If you are in a rejection-sensitive moment, or a traumatized or triggered moment, you will potentially become dysregulated and distressed. And when you're dysregulated and distressed, talking about it doesn't necessarily help. You might think we've got to let it out, we've got to talk it out. But what may actually help is getting in tune with the body through the senses, which may get you into a window of tolerance, a zone of regulation — that means you can begin to do some work that calms and settles both the brain and the body.

So the rejection sensitivity work, the embodied nature of that rejection sensitivity, ties up with what I think was my favorite paper that we published — I'm not supposed to really have favorites — I believe it was called "The Proprioceptive Impact of Neurodivergence on Emotion Regulation and the Relationship with Joint Hypermobility." It's a bit of a long title. But essentially what we showed was that if you had neurodivergent characteristics, you were more likely to experience emotion regulation difficulties, and that those emotion regulation difficulties were related to this sense of uncertainty about where you were in space. We called it proprioceptive surprise. And that relationship linking the brain and the body in terms of emotion regulation was in fact twice as powerful in people with joint hypermobility.

This is the sort of paradox that we see in hypermobility — like dancers who might bump into walls — that this sense of uncertainty about where we are in space may in fact be contributing to mental uncertainty. And, as a hypothesis on the basis of this data, if we were able to improve proprioception — quite simply sometimes, wobble boards, resistance bands, arch supports, just feedback — it might be that improving our sense of certainty about where we are in space could in fact improve our emotion regulation.

Somehow that really excites me, because we know — and I am a psychiatrist — that conventional medication strategies and conventional psychological approaches don't work for everyone. This basically gives us another tool in our toolkit and opens up an entire avenue of brain-body research and possible interventions that I don't think we'd necessarily been thinking about before, or if we had been thinking about, we didn't have evidence to support.

[18:58] Dr. Linda Bluestein: I love that, because I totally see your point, and my personal and professional experience is completely consistent with what you're saying about emotional dysregulation and that in that setting, talk therapy may or may not be that effective. And I'm also thinking about rejection sensitivity and how that might help explain why so many of us are subject to gaslighting ourselves. We go to the doctor and we get this rejection — the doctor says, "There's nothing wrong with you. You're perfectly fine. I did some lab tests, I did an X-ray, you're fine." So then we sense that rejection, but we internalize it. And if we have problems with emotional regulation, that can really set us on a bad path that maybe some other people just wouldn't be as affected by.

[19:52] Dr. Jessica Eccles: No, absolutely. And I think that's the interesting thing about rejection sensitivity — it manifests in different ways for different people. For some people, just as you've described, you can internalize it. But rejection sensitivity can also be externalized — as anger, as rage. Some people may withdraw into themselves and other people may move towards other people.

What is really hard, though, I think — when I speak to my patients in our neurodivergent brain-body clinic, which we have in our NHS service in Sussex, the world's first neurodivergent brain-body clinic — is that that feeling of rejection, that feeling of being misunderstood, that feeling of being let down, means almost a feeling of learned hopelessness and helplessness. There are many patients I talk to who actually don't want to put themselves through the fear of going to see a doctor or a healthcare professional, because they are very worried about being misunderstood.

And not only is that leading to this sense of hopelessness and helplessness, it could actually be really dangerous in terms of not seeking help when you need it. We know obviously that there are lots of problems associated with hypermobility and with things like postural tachycardia syndrome, but that in the main — apart from the genetic causes of Ehlers-Danlos syndrome — they don't tend to be life-limiting conditions. Postural tachycardia syndrome is not a problem of the structural function of the heart. But not being believed may mean that you end up not seeking help for something that is actually more widely understood, like the signs of a cancer or heart disease. And that is really, really sad.

The other thing I just wanted to say about rejection sensitivity — and we don't have a really good construct for it yet — is that one of the papers we just published only a few weeks ago was about the relationship between hypermobility and bipolar disorder and neurodivergence. These Swedish studies have whole population databases, and I will have talked about this before on the Bendy Bodies Podcast: the Swedish data showed that if you had a diagnosis of hypermobility, you were 7 times more likely to be autistic, 5 times more likely to have ADHD, but also 3 times more likely to have bipolar disorder, and unfortunately twice as likely to have attempted suicide.

We showed in a group of patients with a bipolar diagnosis that they were more likely to be hypermobile, and that the relationship between hypermobility and these altered mood states was partly driven by neurodivergent characteristics. And if we think of rejection sensitivity as a sort of gateway or driver into depressed or low mood, dysphoria, or burnout, we must also think of the opposite. Neurodivergent people can get quite excited and busy — there's a sort of a glimmer, things that give you joy. There is also the converse to rejection sensitivity: recognition-sensitive euphoria.

So there is this overarching idea — of all of these paradoxes — that you don't want to be overstimulated, you don't want to be understimulated, of trying to live in this sweet spot. That reminds me of one of the very first books by a patient about hypermobility that I read, back in, I don't know, 2010, 2011 — it was called Bending Without Breaking by Isobel Knight. I really like that analogy. As a hypermobile person, how do you learn to bend physically and mentally without breaking? How do we live well within our limits?

[24:48] Dr. Linda Bluestein: Yeah, and that's obviously really challenging for a lot of us. That's really interesting what you said about recognition-sensitive euphoria. I've never heard that term before — that's fascinating. And a lot of people will be interested in what you mentioned about the Swedish study, which I find fascinating, the database that they collected. We talked a little bit about autism and how much more common that is. Can you talk a little bit about masking — what should clinicians know about masking, and what should patients know? When is it protective? When is it harmful?

[25:28] Dr. Jessica Eccles: This is a really interesting point, and it also cropped up in the rejection sensitivity work — this idea of masking as an important defense mechanism. When I was at medical school, a long time ago now, I was told that autism and ADHD affected males 9 times more than females. We now know that that difference is probably minimal and may not even exist at all in terms of the gender differences. But one of the ideas put forward is that women in particular — though not necessarily just women — are not picked up as being autistic or having ADHD because they learn to have a mask of social competence. They have a social script, they're performing in social situations, or they can be in social situations but find them quite draining and exhausting and need to spend a lot of time recovering. People may be naturally quite hyperactive and fidgety, but they will mask and suppress that.

To a degree, we do need to mask a little to get through the world. But at the same time, masking may come at a considerable cost. It may be energy-draining. It may also be — and I don't know, it sounds like a strong word — soul-draining. It may take a toll not only in terms of energy, but in terms of identity. Who am I? What is underneath the mask?

But masking may also have a function. I talked on the ADHD Chatter Podcast about ballet as an analogy for this. I know you are very interested in dancing, and I can't dance to save my life, but you have this beautiful performance of dancers. In some ways that is a mask — underneath that beautiful performance, the poor dancers' toenails are probably dropping off and they're dealing with very difficult injuries and problems. But the show goes on, and that takes its toll.

One of the interesting things, though — I'm the patron of a charity called SEDS Connective, whose founder created it particularly for hypermobile neurodivergent people. When I was talking with its founder, Jane Green, she said she wasn't quite sure about this masking business in neurodivergence, but what she really knew and understood at a bodily level was that as a hypermobile person she had gone through her life basically masking pain. I don't think people talk enough about that. We talk about masking a lot in autism and ADHD, possibly other neurodivergences, but this idea of being in a body that is unreliable and is going to let you down.

She talks about this — I have a YouTube channel called Bendy Brain, and we interviewed her for episode 3. She talks about how she'd go to the doctor and one time it'd be her left leg that was out of whack, and then another time it'd be her right leg, and they'd be like, "Have you forgotten?" And she's like, "No, no, I'm just being affected on different sides at different times." When you are so disbelieved, or when you have to keep functioning — she was talking about having to look after her children — you end up masking that pain.

I had a strange realization myself. I'm 43, and I have a condition that is associated with hypermobility. Used to be called congenital dislocation of the hip, it's now called developmental dysplasia. I had an improperly formed — well, absent — hip socket, and lots of surgeries when I was younger. I probably started experiencing pain from early onset arthritis when I was about 9 or 10 years old. That pain didn't go away; it just got worse and worse, but it did leave when I was 36 and had a hip replacement.

Unfortunately, in the last just over a year, I've had a lumbar disc prolapse, multiple ankle ligament ruptures, some problems with my right hip, and some trochanteric bursitis. So I've been plunged into a terrible state — my wings clipped, can't really mobilize well, and dealing with awful pain. And I realized that I'd experienced all of that before, but I kind of put it away and forgotten it. Having a taste of that again made me realize that to have gotten to where I am, sitting here talking to you with all of these research papers, getting through medical school, getting through school, getting through residency and all of those steps to end up a fully-fledged consultant — the only way of surviving it was to pretend it wasn't happening or not to show it to other people.

So I agree with Jane in some ways. I don't think we talk enough about masking in this context. But also, if you are a hypermobile person whose body has always been letting you down — possibly since before you could talk — you might not even realize that that's what you're doing, because you think it must be like that for everyone else. And that is such a common experience when I talk to my patients. You say, "Do you get dizzy when you stand up? Do you have to lie down after a hot bath?" And they say, "Oh, but doesn't everyone?" No.

And the same thing with a number of patients recently with quite an unusual immunological phenomenon called cold urticaria, which is where you get hives and pain when you're in the cold. Sometimes people's throats swell up, and you also get this really painful sensation when you put your hands in cold water. I've bizarrely had a run of patients with this particular problem recently, and they're like, "But doesn't everyone feel like that in the cold?" And you're like, "No, it is not normal to have your throat swell up just because it is cold."

There is this degree to which hypermobile people really end up putting up with and experiencing so many medical strangenesses, but have no idea that these are not everyday experiences. Particularly because hypermobile people tend to have hypermobile family members, and so it's accepted as typical.

[33:27] Dr. Linda Bluestein: Yeah. And as you're talking about that, I'm thinking about how so many of these things occur on a spectrum. And if you're talking to somebody and you ask, "Oh, how are you doing?" So often we say fine, right? We're masking, I think, is also to me, as you're talking about this, probably on a spectrum. Pretty much everyone has to mask when they're in medical school, or — like you said, dance is a perfect example — you're trying to make it look so effortless, but you're in pain. It's really hard. So I love those examples.

It sounds like what you're saying though, is that people who have hypermobility, chronic pain, all of these other things — cold-induced urticaria, vibration-induced urticaria — we don't know what other people's bodies are like. And so we just kind of are trying to fit in, and we just kind of pretend like it's not happening.

[34:26] Dr. Jessica Eccles: Hmm. But I also think that making sense of that — and it brings me back to what I was saying about this narrative framework — is when you think, "Oh God, actually all of those things could potentially be linked," and that these unusual experiences, which I didn't necessarily think were unusual, are all connected. Although that doesn't make it necessarily any easier to experience them, having a unifying framework, I think, has a sort of sense of validation and a sense of meaning that you don't have if you haven't got an explanation.

[35:07] Dr. Linda Bluestein: Yeah, that makes perfectly good sense. And the fact that people, again, don't know what other people's joints feel like — so they don't realize that their joints are unstable sometimes, because if they're getting more subluxations than dislocations, they might not realize that other people walking around don't have to deal with that and aren't coping with that.

We are going to take a quick break, and when we come back, I really want to explore your fascinating work on autism and borderline personality disorder. I really want to talk about that because it's something that I think is not talked about often enough, and I know there's a lot of stigma attached to both of those. You talked in one of your papers about that, and I think it's a really fascinating topic. So we're going to take a quick break and we will be right back with Dr. Eccles.

[38:33] Dr. Jessica Eccles: So I was talking to a patient just a few days ago who had no idea that it was not typical to come out in a rash — hives — and go red. From pressure, vibration pressure. She found that clapping brought on hives, and she has a child. You can imagine how often children want to clap and clap back, and how many times at primary school or elementary school you end up having to clap.

But I think this also really feeds into the framework that we talk about in terms of prediction error and mismatch. So if that happens to you and you perceive it to be random — just as you can have heart rate spikes and you don't realize that's because you've changed posture, or you've had a hot bath, or you've had a large meal — those physiological signals are troublesome, overwhelming, scary, confusing. And in and of itself, that uncertainty and randomness is going to feel or even generate anxiety, because it's so unpredictable.

But once you have a framework for it — you had the framework, Linda, but not many people have that framework — you're able to say, "Actually, I need to step away from this vibration plate," or seek medical advice about antihistamines or something. That means it's slightly less scary. But when you don't have that knowledge, when people haven't explained these quirks to you, you think: what fresh hell is next in terms of random weirdnesses?

Dr. Linda Bluestein: "What fresh hell is next?" — we are going to have to use that as one of our promotional pieces, because I think so many people can relate to that. The uncertainty — there's enough uncertainty in life, especially now, but having all that uncertainty in your body and not being able to count on your body to do certain things is incredibly stressful. Incredibly anxiety-provoking.

[41:10] Dr. Jessica Eccles: And also when you don't realize that this isn't like that for everyone. So I had another patient — and it sort of sounds embarrassing — I don't know what the cooking situation is in the United States of America, but in the UK and Europe, there is a sort of luxury brand of saucepans made of very pretty painted cast iron called Le Creuset. These are high-end saucepans. And I was talking to a patient and I said, "What would happen if you had to pick up a Le Creuset saucepan?" And they said, "Well, I would really struggle because they're too heavy for my wrists." I think this could be a new medical sign in the textbooks — the Le Creuset sign.

My brother bought me one of these griddle pans made by this same company. Very beautiful, powder blue. Can I use it? No, I can't, because my wrists are too weak to lift it up. And when you talk to patients and say, "When you come home from the supermarket with your shopping, does it feel like your arms are going to come out of your shoulder socket?" — and they're like, "Yes! But does this happen to everybody?"

Dr. Linda Bluestein: No.

[42:34] Dr. Jessica Eccles: Quite a few people are able to carry their groceries home without feeling physically on the brink of subluxation.

Dr. Linda Bluestein: Yeah. It's hard when everyday tasks cause you to get injured. I remember when I first read about kinesiophobia. I was writing my first paper about pain and pain medicine for people with joint hypermobility, and I came across the word kinesiophobia and I realized, "Oh my gosh, that's what's happened to me," because I kept getting hurt doing little everyday things. I'm very fortunate that I've been able to build more muscle mass, which is protective, of course. But when you don't have that confidence in your body that you're not going to get hurt doing little things, that's incredibly challenging.

I want to go on and talk about autism and borderline personality disorder. There's so much stigma around borderline personality disorder, but there also is around autism. I know you wrote a really interesting paper about this recently. Can you talk to us about the overlap between these, why it's important for this population, what we might want to look at in order to distinguish which diagnosis is more appropriate, and what we can do about it?

[44:05] Dr. Jessica Eccles: Yes. With colleagues Sebastian Shaw and a psychiatrist called Bruce Tammelson, whom I supervised, we conducted a number of interviews with — I think mainly women, I'd have to go back and check the methods. These people had all previously received a diagnosis of what is called in the DSM borderline personality disorder. In Europe, under the ICD-11 classifications, this might also be called emotionally unstable personality disorder. And what it meant to them to later be given or confirmed as having an autism diagnosis.

The bottom line — and it brings us back to what I was saying at the beginning about the framework — is that they felt the autism diagnosis made sense to them in a way that the personality disorder diagnosis did not. It provided a framework for understanding themselves that they had not previously had in connection to the personality disorder diagnosis.

Now, this brings up a huge number of questions. The very first question also brings us back to the history and philosophy of science: how do we know what we know? In psychiatry, we have a lot of labels. We don't have markers in the same way as you might have in other areas of medicine. But you must caveat that in other areas of medicine, which do have biomarkers, those biomarkers and the definitions of those ranges are constantly changing. What people considered to be high blood pressure 20 years ago is completely different now. We know, for example, things like CRP — what we considered to be a normal CRP when I was first a junior doctor is now not the same as what we consider to be a normal CRP now. So biomarkers in and of themselves are a slight fallacy in terms of "this is knowable and solid."

Psychiatric labels — I remember going to a lecture years ago where someone was describing the DSM as basically a Chinese menu: you pick a bit of A, a bit of B, and then there is criteria C. And that's not dissimilar to what happens in physical health, in lots of syndromes. You have major and minor criteria, and these diagnostic criteria — for want of a better word — the great and good have sat around a table and decided what they are.

Are these diagnostic categories actually consistent? They probably are in that, thinking about things like ADHD and autism as we understand them now — I don't know if people are familiar with Anne of Green Gables, but you only have to read that Canadian novel about an orphan to realize that ADHD has been there forever. You only have to read Shakespeare to understand that people have experienced depression ever since people have been writing. But some labels seem a better fit than others.

I think the thing about a neurodivergent description is that it captures things that a personality disorder diagnosis may not. One of the big issues for neurodivergent people is sensory sensitivities — feeling strange when your clothes don't fit you right, when there are funny smells, being overwhelmed by loud noises, or there not being enough noise. I like to go to a café sometimes to concentrate, because a bit of background noise is actually helpful. We're all different in terms of our sensory profile. But the borderline personality disorder label or construct doesn't include any of those things. It doesn't have a sensory element. It has an interpersonal element and it has a self-harm element. And I think it's important to recognize that some forms of self-harm may actually be attempts to regulate a dysregulated nervous system. And if you're hypermobile and neurodivergent, you may be more likely to have a dysregulated nervous system.

The other interesting thing is that the diagnostic categories lump things together. They put autism in one box, depression in another, personality disorder in another, psychosis in another. But actually all of these categories are made up of overlapping spiky bits that are quite common across all of them. So there are elements — for example, ADHD, bipolar disorder, and emotionally unstable personality disorder are all associated with problems with impulsivity and emotion regulation. Would we not be better to focus on characterizing the differences and responding treatment-wise or intervention-wise to those core neurological constructs — what is driving impulsivity and emotion regulation issues — rather than necessarily having these particular labels?

The problem for me with the EUPD or the borderline label is that it's a bit like functional neurological disorder, in that these patterns may well exist, but the label itself has become pejorative, even if it was never intended to be in the first place. People may not know, but the term "borderline personality disorder" actually originated back in a time in psychiatry when we were much more focused on a psychoanalytic approach to understanding people. There was an idea that some people were neurotic — they had anxiety problems, depression problems — and then there were some people who were psychotic, who had delusions and hallucinations. The "borderline" in borderline personality disorder refers to the border between psychotic and neurotic. But when people hear the words "borderline personality disorder," they do not think about that history. They think of it as a stigmatizing label — and now this may sound like a stretch, but it is mainly applied by men to women. Male doctors describing a set of things in women that they find potentially problematic.

So for the people who took part in our study, they were essentially saying that an autism diagnosis provided a more coherent and less stigmatizing account of their differences and difficulties than the previous personality disorder diagnosis.

Now what I am grappling with conceptually in quite a big way is: is it one or the other? Is it either/or, or is it both/and? And I think we have to bear in mind the caveats about what labels are anyway. Just as people didn't think you could diagnose autism if someone had trauma, it is possible for more than one thing to be going on at once. We have to really formulate and integrate all of the different elements of a person and their brain-body interactions.

I think, helpfully, conceptually, the term borderline personality disorder or emotionally unstable personality disorder is moving more toward this idea of complex post-traumatic stress disorder. And again, when I speak to patients, many of them find the idea of complex PTSD resonates in a way that a personality disorder diagnosis does not. But it's perfectly possible — in fact, it's almost certainly more likely — to be neurodivergent and also to have experienced complex trauma.

I'm looking forward soon to some excellent colleagues from Glasgow, Scotland, coming to brainstorm some work we've been doing about the intersection between neurodivergence and trauma. We know from Helen Minnis and Ruchika Gajwani's work that if you have experienced trauma, you are actually more likely to be neurodivergent, and that neurodivergent people are more likely to experience trauma. So I don't think we can get away from the idea that it's either one thing or another.

But I think neurodivergence can provide a framework that is helpful. By understanding what I was talking about in terms of sensory things — and this goes back to the proprioceptive uncertainty — it provides an opportunity and an avenue for regulation. If you give someone a label of EUPD, that doesn't necessarily give you the tools to work with it. But when you understand about a spiky profile and your sensory differences, you can move into understanding yourself better.

Interestingly, there are a couple of techniques used particularly in dialectical behavior therapy, which has been used for people with complex emotional needs — this idea of putting something cold on your face. I remember one of my patients saying they'd been on a program called the Steps program, which is quite common in the UK, and that they'd been told that if you're feeling dysregulated, you could put your face in some water. They said they didn't want to do that because they had a fear of drowning. But what they had worked out was that if they put frozen peas on their face, that did the same job.

My PhD supervisor and mentor Hugo Critchley is very interested in autonomics and reflexes. What that patient was describing about the soothing impact of frozen peas on the face is something called the diving reflex. That activates a parasympathetic response that reduces heart rate, which helps regulate the system — you are calming your autonomic nervous system down. So I don't think we should always throw the baby out with the bathwater. There are elements of interventions for what we call personality disorders that are helpful for regulation.

[57:24] But I do think we have to strongly consider: on what basis do we have these labels? And are we better actually just describing a series of patterns? I also think it's interesting because I'm speaking from a perspective in Europe, in the UK, where I think autism is still a very stigmatized label. My feeling is that there may be more stigma in the US than in Europe, though I could be speaking in overgeneralizations.

There are these hierarchies of stigma. I remember when I was first a very junior researcher — researching, and this was actually brain-body stuff at the time — people who had a condition called hepatitis C were given an inflammatory cytokine called interferon as a treatment. It's now an outdated treatment; something much easier is used today. But at the time, interferon had to be taken for months and months, and it would make about half the people who took it depressed or cause real psychological difficulties. We were looking at why some people might be more likely to experience interferon-induced depression.

I was a junior researcher, maybe 27, with a little poster at a hepatitis conference. The person next to me was presenting about stigma in people who had both HIV and hepatitis C. And in that particular cohort of people, it was perceived to be more stigmatizing to have hepatitis C than to have HIV. That was a real eye-opener to me — that there are these different levels of stigma, and that they fluctuate and change in different social contexts and across the lifespan.

And that is also somewhat the same thing here. We talk about autism — that paper was about autism — but we know that autism and ADHD occur just as often together as they occur alone. For different people in different contexts, attitudes towards autism may be completely different from attitudes towards ADHD. It is a bit of a minefield in terms of stigma and understanding. Our understanding of autism has already changed substantially since the last DSM. Who knows what the next one will bring. But it's also important to understand the history of the DSM — homosexuality was in the DSM until the late '80s, and it is obviously no longer.

[1:00:59] Dr. Linda Bluestein: Yeah, that's so interesting what you said about biomarkers and how they change, because of course right now we're approaching 2026 and the evolution of the diagnostic criteria for hypermobile EDS, and that's causing a lot of stress in the community — a lot of angst, totally understandably. But it's so helpful what you were saying about labels and how they're constantly changing, these biomarkers are changing, and that really at the end of the day, what we should be looking at is how can we help people feel better, function better. Even though labels are important — they're very important because they give us access to things like more physical therapy sessions, more specialists, and things like that — they are still important.

[1:01:46] Dr. Jessica Eccles: No, they actually are. We need labels to count things, and we also need them to code them in your insurance system so that they can be paid for. Sometimes they're a gateway — we can only really prescribe ADHD medicine if you have an ADHD diagnosis. Labels do serve a function. But people are so much more than their labels, and labels are always changing, while the pattern isn't.

As I said, you can see that pattern in — there's this wonderful description in Shakespeare, I think it's in Hamlet, where he says, "wherefore I know not, I have lost all my mirth," which means "I've lost all my happiness." And: "this earth, this quintessence of dust." That is a real description of anhedonia, which is one of the things we conceptualize as a core feature of depression. That's been around in literature forever.

I am sure the pattern of neurodivergence and also the pattern of hypermobility have been around forever. There will no doubt have been an evolutionary advantage to being the type of person who could reach the berries on the strange trees, or the type of person whose physicality meant they could run a particular distance. There will have been an evolutionary advantage to being built differently and to thinking differently. These patterns have always been there. It's just that we have called them different things over different times.

So Linda, one of the things that really came to mind when thinking about the neurodivergence/personality disorder overlap is the Scandinavians — in a meta-analysis, where you pool lots of data from different sources, a paper looked at all of the medicines used by psychiatrists for the treatment of borderline or emotionally unstable personality disorder. The interesting finding was that ADHD medicine was the most effective. So it could be that ADHD medicine is effective in treating emotionally unstable personality disorder. It could be that a lot of people who have a diagnosis of emotionally unstable personality disorder actually have ADHD. Or it could be that, as I said about ADHD, EUPD, and bipolar, that impulsivity and emotion regulation difficulties are the core features, and those are amenable to stimulants.

[1:04:42] Dr. Linda Bluestein: That's so fascinating. And when I think of stimulants, I think of them helping people with focus, but does it also help with the emotional dysregulation and impulsivity?

[1:04:57] Dr. Jessica Eccles: Yes, it really does seem to be a significant benefit. And also, interestingly, some centers — obviously with appropriate medical advice — use stimulants in the treatment of postural tachycardia syndrome because of the vasoconstrictive effects of stimulants. So we are always learning new things.

In the UK at the moment, there's a bit of controversy about what the prevalence of ADHD and autism really is, why there is so much demand for diagnostic assessments, and how our healthcare system can cope with this demand. There is a lot of chatter about this idea of overdiagnosis, which I think is not helpful. But a really important study was published last year in the BMJ by Zheng et al., who showed that ADHD medicine — particularly stimulants — reduced death by suicide, criminality, and substance misuse by about 20% across the board.

ADHD medicine is generally safe. There are loads of studies that suggest that, and its effectiveness is hard to beat. I think we published a paper called "The Elephant in the Room: Neurodivergence in Psychiatry," in which we noted that the number needed to treat with ADHD medicine is 3, which in the grand scheme of medicine is actually a very good number.

I'm not saying ADHD medicine or stimulant medicine is for everyone, but it can — in supporting people with ADHD and neurodivergent people — really save lives. And it's important not to trivialize the difficulties associated with ADHD and autism.

[1:07:10] Dr. Linda Bluestein: I really appreciate you sharing that because I feel like there is, speaking of stigma, a lot of stigma about the treatment and taking stimulants — do you really need that? I'm guilty of it myself with family members at times: do you know that you still need that? So I really appreciate you sharing that. Very important information, and we'll find that Yang et al. paper and link that in the show notes.

Also about the stimulants and POTS — so many people think of POTS, postural orthostatic tachycardia syndrome, as the tachycardia being the problem, so a stimulant would make the tachycardia worse. But that's fascinating that it actually can be beneficial in this group of people who suffer from fatigue and chronic pain and so many other things. We know it's a dysfunction of the autonomic nervous system and not just a cardiovascular problem.

[1:08:12] Dr. Jessica Eccles: And obviously you must talk to your medical professionals, but there are — that's the other thing about medicines. They're not anti-anxiety medicines, anti-ADHD medicines. They all have these biological pathways that have all sorts of downstream effects. They don't all work for everyone, but working out who benefits from what is really, really important.

[1:08:32] Dr. Linda Bluestein: Yeah, that's great. And we are going to definitely have a part 2 of this conversation because we got about halfway through my questions that I wanted to ask. So we're going to come back and talk about some of the other things that you've spoken about: chronic pain, fatigue, self-harm, which you alluded to, but I want to talk about that more for sure.

Before we get to the hypermobility hack, which is how we end every episode, I just want to ask — I love that you talked about the diving reflex and cold on the face, so that we can leave people with something that they can try. You talked about proprioception, working on proprioception as a way to reduce that uncertainty in the body and that proprioceptive surprise. We can use things like compression garments or exercising in the water, or like you said, any kind of tactile cues. Do you think also that other things that stimulate the vagus nerve can help with that emotional dysregulation? So like humming, singing — are those things that might help as well?

[1:09:33] Dr. Jessica Eccles: I think humming probably does. I am a little wary of — when you're scrolling your phone, there are all these things that claim to be hacking your vagus nerve. And I think we have to be pretty evidence-based when thinking about these things. But yes, absolutely — using your own autonomic nervous system to regulate is really important.

And one of the other things that Hugo and I were discussing — he was telling me about the diving reflex — is that you wouldn't realize it, but there's another reflex. I can't remember exactly what it's called, but it basically helps you concentrate. That's not my hypermobility hack, but it is food for thought.

My hypermobility hack is — as I mentioned, I'm experiencing a lot of musculoskeletal problems at present. One of the things that I tell my patients, and tell myself, is: do not underestimate the importance of arch support. A lot of hypermobile people have flat feet, and having flat feet can have a huge knock-on effect throughout the body. Something simple like an insole with arch support can actually make a huge difference to neck pain, back pain, hip pain, and a general feeling of stability.

So my hypermobility hack, which is keeping me going at the moment, is a combination of arch support insoles and incredibly strappy high-top trainers to keep my ankles together.

[1:11:08] Dr. Linda Bluestein: I love that hack. And I just pulled off my shoe because I am wearing these Oofos — it might not look like that much arch support, but it's enough that it makes all the difference. I had so much trouble with my feet. I actually went on a family trip a number of years ago and I was in a wheelchair because I couldn't walk enough for the activities that we were going to do, which were not that much, by the way. My family was pushing me around in a wheelchair because I had so much difficulty with my feet. And now I'm doing so much better from a variety of things. But yes — love that about the arch support, and really paying attention to your footwear, your ankle support, and everything. That's a great hack.

Before we go, can you tell people where they can learn more about your amazing work?

[1:12:06] Dr. Jessica Eccles: Yes! I am Dr. Jessica Eccles, and you can find out more about my work — or our work, because this is a huge team of people involved in this — on my Linktree, Bendy Brain, and also on my YouTube channel, Bendy Brain. And I'm on Instagram as Dr. Bendy Brain. I try to keep the Linktree regularly updated — you can subscribe for alerts. Do check out the YouTube Bendy Brain and Instagram, Dr. Bendy Brain. I'm also on LinkedIn.

And I'm really looking forward to speaking with you again soon, Linda. I still have fond memories of meeting you in person at that IADAMS conference — was it Ohio in 2023?

[1:12:54] Dr. Linda Bluestein: Oh yes, it was. I was telling somebody it was Montreal, but no, you're right — it was Ohio. Montreal was in 2019. Yes, you, Jennifer Milner, and I all had dinner together, which was wonderful. Jennifer Milner was my co-host for the first four seasons of the podcast, and I still do lots of activities with her. She co-hosted when we interviewed you both times, I believe. We had a great dinner. I just love everything that you're doing, and I'm so grateful to you for taking the time to talk with me.

And we have a picture together — I'm going to have to share that with the social media team so they can use it.

Dr. Jessica Eccles: Yes! I think I've got a zebra jacket and you've got a zebra — yes, we've got that photo.

[1:13:48] Dr. Linda Bluestein: Yeah, we're side by side. You're wearing a zebra jacket, I'm wearing zebra pants. Together we have a zebra suit. And I'm Bendy Bodies and you're Bendy Brains. So it's perfect.

Dr. Jessica Eccles: Exactly.

[1:13:56] Dr. Linda Bluestein: Wonderful. Well, thank you so much. I know that you're super busy and you're doing such fantastic work, and I love how it ties so many different things together that impact and touch so many lives. If you think about the diagnoses — borderline personality, autism, joint hypermobility, anxiety, all the different areas that you're touching — this is like most of the population of the world. So you really—

[1:14:25] Dr. Jessica Eccles: Oh yes. And I do really want to be clear that although we're talking about what you might think of as psychological phenomena, I do think there's a brain-body basis to all of these. And one of the biggest problems is not only finding the right framework in order to be believed, but also bridging that gap between the brain and the body.

Dr. Linda Bluestein: That was the opening question — because you used Slido at the IADAMS conference, and your opening question, I believe, was something like: do you think the brain and the body are really separate, or that the conditions should be considered separate? You asked a really great opening question.

[1:15:15] Dr. Jessica Eccles: Yeah. The big idea.

[1:15:15] Dr. Linda Bluestein: Yeah. The big idea. Okay. Well, thank you again, and I look forward to chatting with you next time.

Dr. Jessica Eccles: Thank you, Linda.

[1:16:19] Dr. Linda Bluestein: Thank you so much for listening to this week's episode of the Bendy Bodies Podcast. If you'd like to go deeper, I share additional education, clinical insights, and resources in my newsletter, the Bendy Bulletin, which you can find on Substack at hypermobilitymd.substack.com. You can also help us spread the word about connective tissue disorders by leaving a review, sharing this episode, or sending it to someone who needs it. These small actions truly make a difference in raising awareness about conditions that are still widely misunderstood.

And don't forget, full video episodes are available every week on YouTube at Bendy Bodies Podcast. As many of you know, I offer one-on-one coaching and mentorship for both individuals living with connective tissue disorders and people caring for them. You can learn more about these options on the services page at hypermobilitymd.com. You can find me, Dr. Linda Bluestein, on Instagram, Facebook, TikTok, X, and LinkedIn, all at hypermobilitymd.

As part of our collaboration with the UVA Ehlers-Danlos Syndrome Center, we also want to share some of their helpful resources. For questions or appointment inquiries, you can contact the UVA EDS Center at [email protected]. Again, that's the letter R as in Robert, [email protected]. You can find answers to common questions at uvahealth.com/support/eds/FAQ.

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