The Unfair EDS Journey with Amanda Cassil, PhD

[00:35] Dr. Linda Bluestein: Welcome back, every bendy body. This is the Bendy Bodies Podcast, and I'm your host and founder, Dr. Linda Bluestein, the Hypermobility MD. This is going to be a great episode, so be sure to stick around until the very end so you don'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. Today I am so excited to have with me Dr. Amanda Cassil. She is a licensed clinical psychologist, author, and public speaker based in Pasadena, California. She is the founder of STEM Psychological Services, where she provides psychological support to women and underrepresented minorities in STEM fields, many of whom experience chronic illness. She is the author of The Empowered Highly Sensitive Person and The Self-Care Plan for the Highly Sensitive Person. Dr. Cassil, hello and welcome to Bendy Bodies.

[01:40] Amanda Cassil, PhD: Thanks for having me. I'm excited to be here.

[01:41] Dr. Linda Bluestein: I'm so excited to chat with you. You recently gave a talk at the EDS Global Learning Conference on how to be a better advocate for yourself when talking with providers. That's how I first got to know you and your incredible work. I heard that talk and I was like, I have to chat with her one-on-one. What motivated you to give this talk in the first place?

[02:05] Amanda Cassil, PhD: I feel like I'm in a unique position with my training, but also I have EDS. I've gone to so many doctor's appointments. I have also had a lot of bad experiences. But I also know a lot of providers. I also have a history of working in an insurance office. So I have kind of these insights into all these different areas of how the health system works. And I started to notice that in the same way that patients are having a really hard time feeling heard, getting their needs met, having all these bad experiences, on the other side, I've been hearing all of these bad experiences from doctors, from providers, from front desk staff. And I really started to see, I think a lot of people are just talking past each other. Different goals, different approaches to things, different sources of trauma and bad experiences, just kind of creating this perfect storm of it's not working.
[02:54] And so as I saw these misunderstandings and I started changing my own approach to my care, talking with doctors — leading into the talk, I spent about a year asking different doctors, like, if there's something you could have your patients understand, what would it be? And so this is not just from me, it's from a lot of different sources. And it's difficult because — and I'll probably talk about this a lot today — the health system is very unfair. There's a lot of injustice and bias at play. And that being said, we can't individually control our providers in a given moment. We can't fix those systemic issues in an individual session. And so patients really need some tools to start navigating that healthcare system. And I wanted to start just kind of bridging the gap of maybe if you can see the landscape of what you're navigating more clearly, maybe some of these things can start to help you miss some pitfalls and some challenges along the way.
[04:04] So ideally, doctors get trained better, doctors have better bedside manner, doctors are open to new information, but until that happens we have to figure out how to get our medications, how to get treatment, how to stay alive. And so everything I tried to focus on are within our own control — things like regulating your nervous system, slowing down, adjusting expectations, engaging relationally, coming from a place of compassion and relational dynamics. And I want to be clear: just because something is within your control to make adjustments doesn't mean that the situation or the bad thing that happened is your fault. It's simply, okay, this is what it is — how do we navigate it from here?

[04:49] Dr. Linda Bluestein: That's such an important distinction. I really appreciate you going into that. I feel like advocacy is such a difficult topic because oftentimes when we talk about advocacy, that does come up — like, well, that's not fair.

[05:03] Amanda Cassil, PhD: It's not.

[05:04] Dr. Linda Bluestein: And it's not. No, it's definitely not. And we know that healthcare worldwide is so dysfunctional. It's so fragmented. I hear this from people in literally every country in the world, practically. They say, oh, healthcare in this country is so bad — it's so bad in this country. It's everyone. All of us are suffering from this, especially people with chronic complex illnesses like EDS, HSD, POTS, MCAS, ME/CFS, fibromyalgia, long COVID. That's just to name a few, of course. And so many patients have had traumatic experiences where they have not been believed or even listened to. How do you think is the best approach to discussing advocacy without patients feeling like they're being blamed?

[05:48] Amanda Cassil, PhD: It's tough because I think when you're in a vulnerable place, and especially when those wounds are recent, it's very hard to not take it in in that way. You know, it was early on in my training that I had this realization — I just want to approach everything and I want to believe what people bring to me, because there's a lot of medical and physical complaints that we don't understand. And I think historically in medicine and in psychology, those have been lumped under psychosomatic conditions. I think malingering — people pretending to have issues that they don't have — is really very rare. But there's a lot of rare diseases that we don't understand. And so I made a decision early on to just do this revolutionary thing and believe people when they come to me. And I realized that's not a common stance in a lot of practices.
[06:52] But when I'm talking with patients about this, I usually like to parse out systemic advocacy — these are the big things that we're pushing for. We do really well to push back on injustices in the system, unfair practices from health insurance companies, large practices, hospitals. All of those things we need to push back on. We need to change the rules of the game. And that can look very different from individual advocacy of, in this moment, how do you get your needs met and how do you minimize your own experience of harm? Those are two very different strategies and different approaches.
[07:27] And so when we are in our individual experiences, I'm often asking patients, what are your goals? What are your needs? And then how do we get those needs met within all of these broken pieces? And that's a much harder question to navigate because you feel the pull of like, this isn't right. They shouldn't have said this. They shouldn't have done this. They're not listening to me. And all of those things are true, but if we want to fight to get them to see it, that's rarely going to be effective. And so then how do we strategize? If we consider this a game — just for the analogy's sake — how do we strategize your next move so that you are effectively making progress on your board, knowing that all of these are challenges along the way?
[08:23] And in this process, we have to acknowledge we're in a biased system. Able-bodied, white, heterosexual — all of the majority pieces come into play in how doctors are trained, how the systems are set up. And ultimately, especially in America, healthcare is a for-profit institution. When you have chronic illness, you represent a drain on profits. And so there's just always going to be pushback to us getting our needs met. So the game is rigged. How do you play a rigged game? That's the question.
[09:03] Your trauma is going to get triggered, these things are going to happen. But if we move into a space of non-judgmental awareness — we notice what's happening in the room, we notice what's happening in our bodies — and we take that as data that can inform how we move next, we can ask the question: was this an effective approach to getting my needs met? Was this person capable of meeting my needs? That takes away the blame. Is there blame? Sure. Is that going to be an effective use of your time? Oftentimes not. And so starting to reorient outside of yourself into what does your body need and how do you get it can start to shift the dynamic.
[09:44] And then when you find relationships that are working or are your pathway through, that's where maybe some of these harder conversations might come in. But we can't avoid people blaming you. In systemic structures, it's easier to blame down than to sit and wrestle with our own culpability or the impossible nature of pushing up. And so the blame is always going to filter down. Whether or not you identify with that and take that on — you have some agency there. And then we have to make space for grief, because this isn't fair. This is a lot of fighting that other people don't have to do, a lot of justifying our right to exist that other people don't have to do, but it is worth doing to have a better quality of life. And so it is this constant push, grieving, push, grieving, letting go of certain battles just for your own well-being. It's not a very satisfying answer, but that's usually the route I go with people.

[11:03] Dr. Linda Bluestein: And the grief process is so important. When my health really declined about a decade ago was when I first started to have a lot of problems. I mean, I've had symptoms since I was a baby really, but about a decade ago is when I really had a lot of problems. And somewhere along the way I did realize that I should grieve. It was appropriate to grieve all these things that I had lost. Giving yourself permission to grieve, I think, is sometimes really hard. And I've often had patients ask me — I don't know if I should be practicing acceptance or if I should be going through the grieving process. Do you think you can do both?

[11:48] Amanda Cassil, PhD: Acceptance is part of the grieving process.

[11:50] Dr. Linda Bluestein: Okay.

[11:51] Amanda Cassil, PhD: And I think you can't get there without dealing with the difficult emotions first. I think a lot of people want to avoid acceptance because it feels like defeat — like, she was just telling me to give up. No. We can have an acceptance of what the system is, what our limitations are, and how sad and devastating that is, while still saying, I still need help — can somebody please help me move forward with this? It's a very hard position to hold. It's a lot of emotional work, and I think the nature of having a chronically ill body forces you into that emotional work in a way that other people don't necessarily have to step into. And again, that's not fair. Everybody else seems carefree and like this is fun and they get to go do whatever they want, and we don't. And that sucks.

[12:52] Dr. Linda Bluestein: Yeah, especially for young people. I have quite a few patients that are quite young, and they definitely can get into a pretty dark place. But I also really try to encourage people to still keep that hope alive, because there's usually something that you can do to improve your quality of life, to improve your health. And advocating for yourself in the most effective way is a part of that too.

[13:17] Amanda Cassil, PhD: Yes. And I think sometimes it's kind of like we're building a structure and we have this image of what we wanted it to be, and then all these things start happening and the structure starts falling, and it is very grim and bleak. And we can keep trying to prop up something that's not working, or we can say, let's just start from scratch and maybe build a new image of what my life can look like. And there's a lot of grief there, but there's a lot of hope then if you start to let go of a preconceived idea of what a healthy life or a satisfying life would look like. You can build something new. There's great freedom in that and beauty, but that beauty will always have grief alongside of it. I don't think those two can separate.

[14:01] Dr. Linda Bluestein: That makes sense. And in terms of your talk on medical self-advocacy, if you could boil that down to one or two key takeaway messages, what would those be?

[14:19] Amanda Cassil, PhD: I think one of the first ones, kind of piggybacking off that grief idea, is to slow down. When my health started — I also have always had issues, but probably 6 to 7 years ago it tanked hard. And I kept thinking, okay, this year I'll give it to health stuff and I'll take care of it. And then a year would go by and I'm like, well, it's not solved yet — okay, one more year. And I started to realize that part of my grief was, I have to slow down. This is not a one-time solution, but this is me dismantling the house I thought I had and building something new. And that takes so much time. So slowing down does not mean that you stop pushing for things, but it does change the pace. We're not sprinting to a finish line. We are running a really, really long marathon — marathon after marathon after marathon. And so what pace allows us to keep going and to keep pushing? And how can we be measured and intentional so we're not making all of these impulsive or quick decisions out of desperation, but really measured, intentional, strategic moves as we're healing.
[15:39] And then the other piece really boils down to the nervous system. Research is showing us it mediates our psychology into our immune system — that's sort of the linking piece between the two. It's how we process our emotions. It's also how a lot of dysfunction shows up in the body. And so as we start to nurture and take care of and retrain our nervous system, a lot of changes can happen. But it's very slow, methodical work. And if you're like, wow, that sounds like a lot — it is. But if you just start with non-judgmental awareness, starting to learn how your body responds to stress, even shifting some of the language from "I just fall apart when this happens" to "my body starts to dysregulate, so I know that I'm really stressed — so what do I need to bring this stress level down and for my body to feel more regulated and more even?" — that starts to create a little bit of distance where the physical and the cognitive processes are a little separated. And over time, that starts to give you some insight and some space for growth.
I think reality-checking experiences are really important. This isn't, let's go commiserate and all share about how bad things are. But when you're guessing — like, I don't know if what this doctor said was appropriate, or if this is a good idea, or how this fits with my other care — reality-checking means going to your other providers and saying, this is what we're thinking about doing, what's your insight on that? If 3 of your 4 doctors say, that's actually a bad idea for EDS — great, now you know your intuition was tuned into that. But sometimes they might say, you know, that's worth trying. Then maybe that was a trauma reaction and I'm having trouble trusting, and maybe I can give this a go and this person wasn't just throwing something haphazard out there.
But it really puts a lot of work on us to be intentional and reflective on what's happening physically as well as emotionally inside, and then taking steps to decide how we want to respond. When we're in trauma reactions, everything is so rapid because it's a survival mechanism — we yell at something, we run away from something, we fight something. Those aren't mindful decisions that we're making. And so retraining the nervous system starts to bring the trauma response down so that you can be in touch with your prefrontal cortex and more mindful of why and how you're engaging a certain situation.

[18:32] Dr. Linda Bluestein: That's really fascinating, because as you were mentioning the prefrontal cortex, I'm thinking of how so many people with EDS and HSD — there's a huge overlap with ADHD, and that involves problems with the prefrontal cortex.

[18:48] Amanda Cassil, PhD: Yes. And I think where it gets even trickier is there's a lot of things from chronic trauma that look similar to autism and ADHD. And so I think when we're getting these diagnoses as we're older, it's really hard to tease out what's causing what. But we can tap into regulating the nervous system, and that will help all of those.
[19:20] Everyone in the world has some form of trauma. And if we are not working on that and healing that, we're often just operating out of our own trauma and clashing with everybody else. But then it overlaps with how our brains develop differently because our collagen and other structures in the body develop differently. It makes sense to me that there's more ADHD or autism or other things. And so all of these kind of intersect and swirl around similar patterns. I'm less concerned about what label we're putting on it and more about how are we engaging the symptoms and giving you more tools and more agency over how your body manages things.

[20:08] Dr. Linda Bluestein: That definitely makes sense. People who have conditions of neurodivergency really experience this — connecting with their physicians, really getting their physicians to listen to them. What advice do you give to patients with EDS, HSD, whether they're neurodivergent or not, in terms of how to get their physicians to listen to them?

[20:42] Amanda Cassil, PhD: Sometimes diagnoses are tough because we use them as shorthand to say this is a subset of what this person is dealing with. They're really handy to have, but sometimes if you go in and say, "I have ADHD," your provider may not know how to translate that into the work that they're doing with you. And so I invite people to instead describe what they might experience in the doctor's room — like, "I tend to be slow at processing things. Can I ask you a few questions, or can you give me a second after you give me information to digest it?" Because some doctors, if you don't ask a question right away, they move on. But it's common with neurodiversity to need a second, or to need to ask something in multiple ways, or to ask to have it written down. There are a lot of what we describe as reasonable accommodations for neurodivergency that you can ask for without necessarily getting into the labels. It's sort of like, here's something that would help me. If it's small and manageable, a lot of doctors won't miss a beat.
[22:05] But if you just say, "I have ADHD, I have autism, I'm neurodivergent," a lot of them will probably be like, "Okay, I don't know what you want me to do with that — I treat cardiovascular conditions." They're asking you for consideration, but a lot of them just miss it.

[22:27] Dr. Linda Bluestein: That is really great advice, and it's so much more specific and practical. And you're right, a lot of us don't necessarily know how to translate that into —

[22:38] Amanda Cassil, PhD: Yeah, and there's no reason you should know. But it's a similar thing — when I first got my EDS diagnosis and I would go get blood drawn, I would tell people, "I have EDS," and they'd say, "Okay." And then I shifted to, "My veins are fairly fragile. They're easy to blow." It has been so much better of an experience. The diagnoses aren't always helpful. I'm just like, what is the single piece of information they need to do their job? And that started shifting how I communicated.

[23:15] Dr. Linda Bluestein: Sure. And for people that have had suboptimal experiences with their physicians, their clinicians, or physical therapists — what do you recommend that they do?

[23:30] Amanda Cassil, PhD: Depending on how suboptimal it is — we want to start with, if your nervous system is dysregulated, get to safety and regulate your nervous system. That's priority number one. Just take care of your body. Don't try to solve a big situation when you're in that fight-flight-freeze response. And then next, do the reality-checking — consult with people you trust. This might be family members, close friends, therapists, and other providers that are on your team. And start asking the question of what do you need going forward? Does this person pose a risk to your safety, emotional or physical? Do you need to look at recovery from this experience before you decide how to move forward? Do you need to work toward reconciliation with this person?
[24:26] Sometimes they're bad enough that it's like, I'm done — just go to someone new. Great. Other times it's, this person really hurt me, they're the only person who will provide this medication I need, but I don't want to go back. And it's like, that's a situation where you might have to have some hard conversations. Or you might have to steel yourself, get the care you need while you are interviewing other providers to see if they can take over that care. So rather than dropping out entirely and potentially messing up your medication and sending yourself backward, can you keep showing up just enough to get your needs met while you pivot and maybe go elsewhere to find somebody who can take over those needs and then extricate yourself? But that's challenging, that's hard, and it's going to be draining. And so then what do you need before, during, and after those visits to regulate your nervous system, to take care of yourself, to recover — and build those into your life.
[25:33] And I want to say something about consulting with other doctors. I think sometimes when we talk about our experiences, we do so more casually, and we're kind of hoping a doctor will validate our experience. But I find it works better if you shift the language slightly: "I had this experience — I don't need you to tell me this person is horrible or not, but I'm not really sure what good options are moving forward with my care. Can I get your thoughts on how to handle this in a professional way that still supports my care?" A lot of doctors can meet you in that space because they never want to throw another doctor under the bus, but they understand bad fit. And so if you can give them the space to advise you without throwing someone under the bus, they can help you — either give you referrals, give you advice for how to deal with that person, or maybe give you a different perspective on what might be shaping the way they're responding. Those are all gems that can help you and give you corrective experiences.
[26:52] But after you get all that consultation, ultimately you're the one that has to live with it. So not doing things just because everyone told you to, but digesting it and deciding, how do I want to move forward? What needs do I need to get met? And what do I feel like is my best option for that? Think about what options give you the highest chance of mental and physical health gains. Play the odds in your favor.

[27:23] Dr. Linda Bluestein: And you mentioned during that answer, you mentioned "steel yourself." Can you elaborate on that?

[27:35] Amanda Cassil, PhD: Sometimes we know we're going into a horrible situation, but we have to go through it to get to the other side. And in those situations, we have to kind of brace ourselves. Something might hurt, something might be unproductive. This doctor may say really insensitive things — like, well, everything would just be better if you lost weight. So it's like, I need this medication, but every time I see this doctor, they mention my weight and I hate it. Then it's sort of, how do you go in and maybe distract yourself while that happens? Or just say, I need to schedule a hangout with a friend afterwards because I'm going to be crying and a mess, but during it, I need to just keep it together so that it's the shortest interaction possible.
[28:27] Those are the types of things of like, yeah, this is gonna suck. It's kind of like exercising — I don't enjoy it, but it does enough positive things in my life that I have to keep doing it, and the benefits are there. And so over time I've changed my way of thinking about it, but for a long time it was just like, I have to steel myself and get through this. And eventually I stopped dislocating as much, and I found things that worked, and I made progress. But a lot of the things we have to do involve discomfort and horrible things. And that's where, strategically making your choices of — is this going to do more harm than good? Is this harm potentially going to take me somewhere good? And then how do I heal from it? Those are hard questions.

[29:21] Dr. Linda Bluestein: Yeah, definitely. And in terms of grief, can we talk about that a little bit more? What role grief has in living with chronic illness, and how people can cope with that?

[29:36] Amanda Cassil, PhD: I can talk about grief all day long. We often think about grief — or a lot of us are raised thinking about grief — related to death. And I like to clarify: grief specific to death is bereavement. If you are grieving the loss of someone, you are in bereavement. But grief itself is the reaction that we have — really, it's a nervous system reaction to any real or perceived loss. A lot of people in their 30s start to realize all of the career options that they had in their 20s are going away. Did I actually have those careers? No, but it is a sense of loss that those are doors that are closed that I'm not going to go through, and that's painful. And we have so many things like that with chronic illness.
[30:25] We have to acknowledge that it's not just somebody lost something concrete and tangible, but even our understanding of who we are, who we thought we could become — that starts to shift. And that is a form of loss. And so we go through these stages of denial, anger, bargaining, depression, and ideally acceptance. They don't go in any certain order. And you might be in a place of acceptance for 3 months, and then something just pushes you back into something else. If we fight it, we tend to get stuck. But if we can work through it, experience it, find productive ways to digest it, then we start to move through it and it gives us a lot more freedom.
[31:16] But with chronic illness, there are physical limitations all the time and they're not consistent. They pop up here and then they're gone for a while and then a whole bunch pop up over here, and they disrupt a lot of things that we value and that are important to us. It also does remind us of our own mortality. I think this is something people with chronic illness live with — a constant thread attached to their own mortality in a way that other people don't. And it can give you complicated feelings when you're hanging out with able-bodied people. It doesn't mean don't ever talk to able-bodied people, but it does mean knowing what groups are good for what things in your life, and having spaces where people can hold that with you and not be scared. Because able-bodied people are very quick to be in denial — you're fine, it's gonna be okay, it's not that bad. That has more to do with their own denial that they might lose someone they care about, and that's terrifying. We don't like feeling negative emotions, so we just push them out.
[32:23] And then we combine that with injustice and unfairness in the system, but also unfairness of like, I can't lift more than 10 pounds for the rest of my life because of potential injury, or this treatment exists and my insurance decided to stop covering it and I can't pay $5,000 every 2 weeks, or I just learned that just because I have pigmented skin, I'm at a way higher likelihood of dying during childbirth. Those are all outrageously unfair things, and they trigger grief, and they should. And it's the way that life is, and so we have to find a way to wrestle with that and find a way forward in the midst of it, or else it becomes really crushing.
[33:16] And I think too, all of this research coming out around gratitude is beautiful — I love it. And it becomes sort of a recipe for just be thankful for what you have and skip the grief and just go to gratitude. And I sincerely believe you cannot get to gratitude without going through the grief, because when you can acknowledge it, you can feel it, and you can hold that reality as like, this is it — then when you anchor into the things that are good in your life, it feels very different than if it's, I shouldn't feel bad about my loss of the ability to function day to day because I have a house, so I'm not allowed to feel these negative things. No — there is grief and there is a privilege that you have that you should feel thankful for, and that's a beautiful thing. It's the both/and of life. And in our prefrontal cortex, we can handle the both/and, the gray areas. But when we're operating out of our brainstem in fight/flight/freeze, we need black and white thinking to get to safety. And so it can feel like if you're pushing me into gratitude, you're erasing my whole experience. Meeting people in their grief first is a very different experience.

[34:50] Dr. Linda Bluestein: Wow, I love that. That's —

[34:52] Amanda Cassil, PhD: I'm just throwing lots of stuff at you.

[34:54] Dr. Linda Bluestein: No, that's fantastic. I've even had this happen with people — I'm thinking of one particular person who was a therapist a number of years ago, and I would say something and they would immediately kind of go to the positive Pollyanna type of response. I was like, I just need somebody right now to say, yes, that sucks. And like you said, that makes such good sense about how we are at different points in time in different parts of our brain.

[35:28] Amanda Cassil, PhD: Yes. And one of the beautiful things about therapy and about healthy relationships — and this is something doctors and patients can tap into — is that compassion calms the nervous system. It physically calms us down. So when somebody's in fight-flight-freeze and you can give them some validating reflection, some calmness, some kindness, it will help regulate them down. And so when we're in grief, when we're in trauma, we're in our nervous system, and we just want to shift what part of our nervous system we're operating out of. It's my form of biohacking.

[36:15] Dr. Linda Bluestein: I love it. And what about if people are still processing traumatic experiences? What can they do?

[36:28] Amanda Cassil, PhD: So much of life is about processing our traumatic experiences. It's not something that we do and put away and never have to do again. And the more we get into a fluid state of acceptance that this is a part of life, the less suffocating it is when we have to step into it. But we start with patience — going slow, but also being patient when other people sometimes don't get it, or they are in a space where they can't show up for it. I've started, even in my own life, rather than thinking like somebody failed to do X, just thinking that for whatever reason they couldn't show up in that space. And it's very rarely malicious. So much of it is people are caught in their own stuff and they're not even aware. And so being patient and being kind goes a really long way. And it doesn't mean we become doormats. If this person can't show up and they've repeatedly not been able to over and over, maybe I stop asking for them to meet me in that space, and that may cause some separation — and that again is grief that I have to figure out what to do with.
[37:51] Finding a therapist who can walk through that journey with you — I know that's a privileged thing to suggest, and I hate that about my field. But so much of medicine is more accessible and more helpful the more money you have, which is another thing that is worth grieving and worth global advocacy and pushing against. And if you have those resources and you have the ability, I highly recommend it. If you can't, there are a lot of self-help books, trauma books, and resources that can kind of help walk you through it.
[38:33] And then go slow. With chronic trauma, we also have the anxiety response. With anxiety, avoidance reinforces the anxiety, so we don't want to just never deal with it. But going too quickly, diving too deep, going too fast, can set us up for failure, which then reinforces wanting to avoid it. So going really slow. It might be that you read a chapter of a book, put it away for a couple months while you digest it, and then come back and do another chapter. And it might be that, okay, this doctor I know could really help me, but they trigger something and I cannot feel safe with them. So maybe I'm gonna wait a few years and then maybe try again or see if another doctor comes up. And again, that's sad and that brings up grief because we want to be able to just fix things right away, and we can't.

[39:32] Dr. Linda Bluestein: You mentioned that there are some books that people could read. Do you have any in particular that you're thinking of?

[39:39] Amanda Cassil, PhD: One book that I've been — some of these deeper books I take a really long time to read. The Myth of Normal by Gabor Maté is an excellent one, and it touches on some of the toxic nature of a chronic stress culture. I've heard, but haven't read myself, I think it's called My Grandmother's Hands — there are also books by Bessel van der Kolk, but I've heard My Grandmother's Hands has a more diverse lens to it. So Bessel van der Kolk, Gabor Maté, and I apologize that I don't know the author of My Grandmother's Hands off the top of my head. Those are good directions to go.

[40:19] Dr. Linda Bluestein: I will find it and I will link that in the show notes, so no worries at all.

[40:31] Amanda Cassil, PhD: And I will go learn it so that I don't get caught in that situation again.

[40:35] Dr. Linda Bluestein: No worries at all. It happens so often — something gets mentioned and then people are like, wait, I want that additional detail. So I appreciate that.

[40:44] Amanda Cassil, PhD: Yes.

[40:45] Dr. Linda Bluestein: Thank you. So a really cool thing that they had at the conference this year on the WOVA app — there was the opportunity to submit questions. And I don't know about you, but as a speaker, I got to answer one question and that was it. So you don't usually get to answer very many of the questions. I thought it would be great to ask you a couple of the questions that were submitted. One was: how can someone present the research they have done to their doctor in a respectful way?

[41:17] Amanda Cassil, PhD: I love this question. And I think every doctor will receive you differently. But generally when I'm approaching it, I start with a level of gratitude that they're helping me, and an acknowledgment of their expertise. These doctors are in school for so long to become an MD. You get so much experience, and it is honestly a very brutal training process. And I also acknowledge that Dr. Google is a mixed bag, so I want to bring in my own humility — I don't know everything. I have some very deep knowledge about very specific things related to my condition, but if I come in thinking about POTS, I don't know the vast breadth of other cardiovascular neurological issues that can look like POTS. And so not holding too tightly to the outcome, acknowledging their expertise, having some humility — you know, I know that what I find online is not the whole story, but this resonated with me, and I'm wondering if we can rule this out or try to figure out what's going on with these pieces that I resonate with.
[42:37] Where I see people have a hard time with this is when they have a specific belief — I have EDS, I have this other thing, I must have POTS. So they go in and the doctor says, okay, we're going to run this whole battery of tests. And they're like, well, I just told you what I have, I already tested for it. And they get angry with the doctor. And there's a lot to be said about trust, right? Because when you have enough bad experiences, it breaks your trust in the medical system and in providers. And so rebuilding trust takes a long time, and it's very scary because when you trust someone, you are more vulnerable to being hurt. But when we don't, we run the risk of head-on conflict with doctors.
[43:29] I myself thought I might have POTS, went to a neurologist, and I've had very good experiences with her. She refused to diagnose it as POTS, but she didn't refuse to treat my symptoms. So we started with just working on the symptoms, and I've been working with her now for, I think, 4 years. And about year 3, I think she trusted me enough to give me some insight behind the scenes of what she was thinking and why she went the route she did. She explained to me how it would have basically worked against me long-term in my care to have POTS in my chart. She said, there's something else going on here — if we put POTS down, people stop questioning what's going on, and we would have missed certain things. And that required me to trust her that she knew what she was doing. For her to share that with me required that she trust me. That took 3 years to get there. And it requires humility on my part that there's a lot I don't know and I have to trust this expert's judgment.
[44:37] And so that's one of the things when we're asking, what are your goals in seeing this doctor? Is it I want a specific diagnosis — which sometimes we do because it opens up access to specific things — or sometimes we want help with the symptoms, and the journey there may take us a little bit longer. But I want someone who's thorough and an expert in what they're doing, and I want to make sure we're not missing something. And that's a long process, and it's frustrating and it's scary.

[45:10] Dr. Linda Bluestein: And I tell people all the time, whenever possible, to come in and describe their symptoms, describe what they're experiencing, but don't label it. They'll say, "but this made my POTS worse," and it's like, that's so nonspecific — I don't know what that means. I don't know if that means you had more tachycardia, more palpitations, you were more dizzy. It's important to be specific. And I love your answer because it's very common that people will find things online that are actually helpful, but they could also find something that could lead us down a path or stop us from going down a path. So that's really, really important.

[46:05] Amanda Cassil, PhD: Yeah, and I wouldn't have known to go to a neurologist and ask that if I hadn't found information in my own research. But once I got there, I had to have the awareness of, I don't know what I don't know. They didn't spend 10 years just learning about POTS — they learned a lot of other things that I don't have 10 years to research on my condition. And so it's this difficult relational piece of I'm coming in with this very hyper-specific set of knowledge about my body and my community, and you're coming in with this very specific set of knowledge about an entire field. How do we bring those together in a way that hopefully doesn't inflict trauma, doesn't challenge egos? It's very messy.
[46:59] It's going to be messy along the way. One of my takeaways is just, you're going to have some great wins and you're going to have some where you look back and you're like, probably should have done that differently. But now you know, and that's data you can use moving forward. And that's the non-judgmental awareness of how do we turn this into something useful going forward?

[47:25] Dr. Linda Bluestein: Love the non-judgmental awareness.

[47:31] Amanda Cassil, PhD: It's hard too.

[47:31] Dr. Linda Bluestein: Yeah, very hard. I think a lot of us are hard on ourselves. We're constantly judging and assessing.

[47:37] Amanda Cassil, PhD: And how we talk about ourselves and to ourselves is reciprocal with how we treat other people. And so if you start practicing more compassion in one area, it's going to start to filter over. So wherever is an easier access point for you to start practicing it, jump in there.

[47:57] Dr. Linda Bluestein: Yeah, definitely. What about if someone goes to an appointment and they're told they can only address one symptom or one issue, and we know that most of us have way more symptoms and issues than that? What do you suggest people do?

[48:14] Amanda Cassil, PhD: I just first want to acknowledge how annoying that is. I've had that happen, and at times I'm just speechless because I'm like, I don't even know how to start talking to you if I can't talk about multiple things happening at the same time. I've even had it in PT — my shoulder's hurting, I think it's related to my neck, and they're like, I'm not gonna look at your neck, I'm only gonna look at your shoulder. Great, because there's muscles attached to both, right?
[48:48] So when that happens — again, remind yourself the game is unfair, and what is my best option in this moment? With that, here are a few ideas people can try. One is to gently return that question to your doctor and say, well, I have multiple things going on that I think are connected — how would you recommend I start prioritizing addressing these things? They might get a little frustrated, but it's a valid question, because as patients we don't know what symptoms are more concerning than others. You went to school for a really long time — I don't know what's more concerning. And that will also give you insight into how much they're willing to meet with you and work with you. If they say, I mean, it's up to you — that's a very clear signal that they're not going to collaborate. They're here for if you got a cough, if you have COVID, if you have a UTI. Those are really clear-cut. That might be the extent of what they can do.
[50:07] If it's clear that they're not going to meet you partway, then I would start asking, okay, I have this really complex set of things going on. I believe they're all connected. Do you have referrals for who might be a good person to talk to about this? Because most primary care — and I think they're who are majority affected by that policy — a lot of that goes back to how they're reimbursed from the insurance company. They're not reimbursed for multiple things. And so for some of them, it may feel like, you're asking me to do 3 appointments worth of work in 5 minutes, and I'm not going to get compensated for that. A lot of practices will double-book patients so that they never have empty slots, and doctors are often overworking. So the quicker they can get you in and out, the better for them, because they have to work way past when they close and take care of all these emails that come in because some administrator higher up decided this would be a good idea for patient care. Doctors really can't field everything that they are expected to field. And so I have empathy for where they're coming from with their own limitations, but again — you have to figure out how to get your needs met.
[51:35] So asking them, if you can't do it, do you know someone who can? That's a totally fair question. I have this, this, and this — and they might say endocrinologist, cardiologist, neurologist. Great, that's a good use of our time today. Can you help me get referrals into those places? That's an appropriate use of your primary care. That's them helping you within the limits of what they can do.
[52:05] And then if that is your primary, keep them in rotation for simple things. When I start with new doctors, I usually come in with a list of my medical team. Part of that is just, just so you know, you're not dealing with me in isolation — there are other people managing this. But I also help them by telling them what role I think I need them to fill on the team. So with a primary, it's, I don't expect you to fix EDS or POTS or anything else that's complicated, but I do need help finding referrals. And when something simple like a UTI pops up, can you help me with that? And once they know this is what's expected of me and it fits with what I can do as a provider — great, let's work together.
[52:53] And others will sometimes say, I may not be the best fit for this, or I'm new to the area and I don't really have a network of people I can refer you to. Great, thank you for letting me know. Do you know any other primaries that might be more established in the community that could handle something like this? And so again, that's non-judgmental awareness too — I don't think you hate me because you can't do this, but you can't do it, so we have to find a different way. If you have any advice on which way I should go, that would be really great.

[53:32] Dr. Linda Bluestein: I love that. What about the other question that was submitted on the app that I wanted to ask? What are your thoughts on DBT for nervous system and emotional regulation?

[53:42] Amanda Cassil, PhD: DBT is — short version — it's great. It stands for dialectical behavioral therapy. The research shows that it's really effective with any sort of disorder where you might get dysregulated pretty heavily, or where you might have a hard time controlling your emotional responses or responding appropriately in a given situation. I acknowledge "appropriate" is a wide subjective definition.
[54:18] But I have to say, there's no right therapy style. I'm probably in the minority of therapists — people choose their camp and they stake their claim. But it's really all of those styles of therapy work really well for different populations. Some of it is figuring out, read about different styles of therapy and see if one resonates with you. If you're someone who has a hard time regulating your emotion in the room with providers, or managing your tone of voice and the intensity of your responses when something doesn't go your way, DBT is a really effective tool. Some people are like, that's not my issue — then DBT might be less fulfilling for you. But there's a lot of research-backed interventions for trauma, chronic pain, chronic illness, emotion regulation. It's just finding the style and the person that fits for you.
[55:12] And again, this is an area where going slow is helpful. When you're starting therapy, especially the first time, it can make sense to try 2 or 3 different therapists. Schedule a first session with them, let them know you're trying a couple different people — that's kind of a professional courtesy. Then once you meet with all of them, email them and let them know what you're going to do. And when you're meeting with them or over the phone, ask them what their approach is to trauma, chronic pain, or chronic illness. You may not recognize all of the words they throw out, the style of therapy or the way they frame things, but hearing how they talk about it gives you some insight into how they'll approach your care and how they'll be interpersonally. That's really useful information where you can say, this might be a good fit, or something about that just didn't sit well with me, so I'm going to try this other person. And that helps you skip over being in with someone for 6 months and then being like, I don't think this is doing anything.
[56:29] Therapy takes a long time, so adjust your expectations on how quickly you'll notice things. But you should feel a sense of, this person understands me, we have productive conversations where I feel like I'm getting occasional insights, a different perspective — it's calming, I feel calmer in my body after meeting with them. Those can all be indications that you are doing something, but it's not always obvious in the moment. A lot of our interventions are much more subtle than physical medicine interventions.

[57:09] Dr. Linda Bluestein: But you have the incredible ability to improve someone's mental well-being, which can translate to everything.

[57:18] Amanda Cassil, PhD: That's the psychoneuroimmunological axis. And my physical therapist and I talk all the time about nervous system stuff and how we both regulate the nervous system just from different directions. Physical therapy is wonderful, massage therapy is wonderful, mental health therapy is wonderful. There are a lot of really great therapy options out there.

[57:50] Dr. Linda Bluestein: Such an important thing for people to think about. I always tell my patients and my clients, you deserve to go to counseling and work with a therapist. And it's such an important piece — people tend to think of the mind and the body and the mind-body connection if we're lucky, but it's all one and the same.

[58:11] Amanda Cassil, PhD: It's all the same.

[58:13] Dr. Linda Bluestein: Yeah.

[58:17] Amanda Cassil, PhD: I'm so thankful for my therapist, and I've had a few different ones over the years because life happens and things change, and it's been crucial for me. I think people assume a lot of times that therapists don't need therapists — they know all the information. There's the information, but then there's the experience of being cared for and having someone be so attuned to you. That is very healing, and there are physical effects of it. But it's also a lot of vulnerability, which is scary.

[58:50] Dr. Linda Bluestein: And I think sometimes people think that their spouse should be able to do that for them, but your spouse will have their own needs too.

[58:58] Amanda Cassil, PhD: Yes.

[58:59] Dr. Linda Bluestein: So you want to be balancing meeting each other's needs, of course, and being compassionate with each other. But having a therapist is really, really important.

[59:10] Amanda Cassil, PhD: No one person can meet all of our needs. We are communal creatures, and different people, different contexts, different skill sets meet different parts of ourselves. And so to feel full, we need lots of different points of contact with the outside world.

[59:32] Dr. Linda Bluestein: We've covered so many interesting and rich topics in this conversation. What do you think we should call this episode?

[59:37] Amanda Cassil, PhD: I really want to underscore: it's unfair. And I hope you find your way through.
[59:49] I think about life a lot as we're all hiking our own paths — we're all kind of on the same map but going in different directions. And occasionally we get to walk with somebody, which is really beautiful and profound. And when we feel lost and alone on an unclear medical journey, when you find community, it's like, I want to be in this community, I'm scared to leave. But especially with something like EDS, it is so individualized — people can meet you in certain places, but you all have the same symptoms, you all go to the same doctor, and then you all end up with slightly different diagnoses and treatment plans. And it's confusing. We want to be in this together.
[1:00:39] And this goes back to — that's very brainstem thinking. We tend to create all-good, all-bad groups because when you're in danger, who's your enemy and who's your friend is really important. But when we're operating out of our prefrontal cortex, it's like, yeah, this person's really good at this, not so great at this. This community can be really helpful, but sometimes I also feel really drained. Those go together. And so having multiple social outlets around different parts of things you love can help counterbalance that. It's not all good, all bad. I have lots of different people that I love being around, and sometimes I get to see them — I don't get to see them all as much as I want to because health is hard, but when I do, it's really fulfilling. I don't know how I got there from what's the title of the episode, but that's okay.

[1:01:41] Dr. Linda Bluestein: It's still great. It's all great information. Did you think of any questions that I missed, or do you have any final thoughts?

[1:01:50] Amanda Cassil, PhD: My final thought is I want to speak a word of encouragement to people. In moments when you feel defeated, please know that there are doctors out there trying to make systemic change. And in the way that you can't necessarily make systemic change on your own, there are those of us who are aware of it and trying to improve things. And our efforts are going to be slow and gradual, but we are pushing every day to help expand your access to care, to educate our colleagues, to improve our own skills. And we will at some point fail you, even the good ones of us — we are not perfect, but we are doing the best we can. And I hope that you can find more of us along your journey. I'm really sorry that it is such a horrible journey, but remember that when it feels hard, it's because it is hard, and you're not crazy that this is hard. I hope you can hear that and take that in — what you're struggling with is real. And I wish you didn't have to.

[1:03:04] Dr. Linda Bluestein: All right. And I like to close every episode with the guest's favorite hypermobility hack. Do you have a hypermobility hack you'd like to share with us?

[1:03:17] Amanda Cassil, PhD: My favorite one that most people hate is taking processed sugar out of your diet. Processed sugar does nothing good for us and actually causes a lot of harm. There's a lot of research on so many ways it is bad for our bodies and it dysregulates us. That being said, the first time I heard that piece of advice, it took me another 10 years of hearing it before I felt ready to take that jump. So I totally understand if you're not in a place where you're ready to make that change — just tuck it away in your back pocket for when you are.
[1:03:54] And outside of that, in the spirit of regulating the nervous system, start working on your breathing. I know exercise and yoga is a fraught topic for a lot of EDSers, but the breathing itself — one reason that doctors love yoga is because it activates your parasympathetic nervous system, which actively pulls you out of fight-flight-freeze. And a large part of that is the breathing exercises. So starting to get in tune with your breathing — it helps you regulate your breathing when you go into fight-flight, and it also reminds you to keep breathing when you go into freeze. And the more you practice that, the more it becomes encoded in your body. And if you have a physical therapist, even working with them on how you hold your rib cage to maximize the ability of your lungs to expand.

[1:04:52] Dr. Linda Bluestein: Love that. And where can people find you online?

[1:04:56] Amanda Cassil, PhD: I have a website — it's stempsychology.com — or they can find me on Instagram @stempsychology. I'm not great at social media and I don't post often, but you are welcome to join me and see when I do post.

[1:05:10] Dr. Linda Bluestein: Well, Dr. Cassil, it was so fabulous to get the opportunity to chat with you today. I feel like this is going to be such a valuable topic — whether people have EDS, HSD, some other chronic condition, or none of the above. The things that we covered are so useful and so helpful. I can't thank you enough for taking the time to chat with me and sharing your knowledge and your wisdom.

[1:05:46] Amanda Cassil, PhD: Thank you. This was a fun experience, and thanks for having me on and for sharing your platform in ways that help people.

[1:05:57] Dr. Linda Bluestein: Thank you for listening to this week's episode of the Bendy Bodies with the Hypermobility MD podcast. Visit our new website at bendybodiespodcast.com where you can now view guest profiles and show notes with links to products and journal articles. Leave me a comment, sign up for updates, leave a review or a voicemail, and access the podcast on your favorite player, all directly from our website. You may hear your voicemail in a future episode where we answer your question or dive into your gracious feedback. Follow us on Instagram at @bendy_bodies. We love seeing your posts and stories, so be a buddy and engage our community by using the hashtag #BendyBuddy. That's hashtag B-E-N-D-Y-B-U-D-D-Y. You can also find me, Dr. Linda Bluestein, on Instagram, Facebook, Twitter, or LinkedIn at @HypermobilityMD. Visit hypermobilitymd.com for information about medical services and one-on-one coaching. This podcast is for general informational purposes only and does not constitute the practice of medicine or other professional healthcare services, including the giving of medical advice. No doctor-patient relationship is formed. Do not disregard or delay obtaining medical advice for any medical condition you have. Opinions shared are that of the guest and do not necessarily represent the views of the host or any particular organization. Sponsorship of the podcast does not necessarily mean an endorsement. Thank you for being a part of our community, and we'll catch you next time on the Bendy Bodies Podcast.