Conquering the Wall: A Round Table Discussion

[00:11] Jennifer Milner: Hello, and welcome to Bendy Bodies with the Hypermobility MD, where we explore the intersection of health and hypermobility for dancers and other artistic athletes. I'm Jennifer Milner, here with co-host Dr. Linda Bluestein.

[00:25] Dr. Linda Bluestein: Hello, everyone. And before we introduce today's special guests, we would like to remind you about how you can help us help you. First, subscribe to the Bendy Bodies Podcast and leave us a review. This is helpful for raising awareness about hypermobility and associated disorders. Second, share the Bendy Bodies Podcast with your friends, family, and providers. We really appreciate you helping us grow our audience in order to make a meaningful difference. This podcast is for you.

[00:50] Jennifer Milner: This episode, we're doing things a little bit differently. We usually have one guest on to help us dive deep into a topic, but today we've got several guests to unpack this specific topic. We're talking about living with Ehlers-Danlos Syndrome, Hypermobility Spectrum Disorder, or other hypermobility disorders. And we have several people experiencing life with a hypermobility disorder while trying to live and work as some sort of artistic athlete, or who have performed in this capacity in the past. We will have everybody introduce themselves. Mariana, let's start with you. Can you share your story with us, please?

[00:51] Mariana J. Plick: Sure.
[01:38] I'm a circus performer. I'm an aerialist specializing in dance trapeze. I do fire — fire breathing, fire fans, fire eating — and I've also done a lot of contortion, although right now I'm on a break because of some tendonitis. I've done a lot of my training and working in New York City, and now I'm in Montreal.

[02:07] Jennifer Milner: Excellent, thank you. Kyle, why don't you tell us your name and tell us about yourself?

[02:12] Kyle Thompson: Okay, my name is Kyle. I'm 20 years old, and I live with four different chronic illnesses. I have POTS, EDS, mast cell, and arachnoiditis. This all started about two years ago when I was diagnosed with a spinal tumor. I had a couple of surgeries and a lot of procedures to try to fix my body, and I've been recovering ever since.

[02:34] Jennifer Milner: Wow. Okay, so you are going to have a lot of firsthand experiences to share with us.

[02:39] Kyle Thompson: Yeah, I will.

[02:40] Jennifer Milner: That is excellent. All right, Marimba, let's hear from you — and your little one too, if he feels like talking.

[02:48] Marimba Gold-Watts: He's also probably hypermobile, as you can see. So my name is Marimba Gold-Watts, and I'm a former dancer. I initially studied classical ballet at San Francisco Ballet, and then I moved to New York and became a modern dancer professionally. When I was in my mid-20s, I had a pretty serious ankle injury and had to retire. In that process of recovering from my ankle injury, I discovered that I have EDS, and I had quite a lot of — I would say — drama and trauma in my recovery process, including four ankle surgeries to sort of recover from that.
[03:30] That led me to becoming a Pilates teacher, where I work primarily with professional dancers, most of whom are dealing with some sort of hypermobility spectrum issues. And that's where I am.

[03:42] Jennifer Milner: Excellent. And that's a great example of taking what you've got and trying to deal with it and being able to make something out of it. So, last but not least, Cailey, what do you want people to know about you?

[03:55] Cailey Brandon: Hello, I'm Cailey. I studied as a pre-professional dancer until — well, until I hit my EDS wall at about 16. The saga kind of began when I had my first ankle fracture at 7 years old, and then it just kind of was back to back from there. It was a perpetual joke like, oh, what time this year is Cailey going to get a broken ankle? After five broken ankles on one side and four on the other, I pretty much just hit a wall — I didn't have enough time to recover between them. The doctor basically told me I needed to have surgeries and different things like that, or stop pursuing pointe dancing.
[04:33] I ultimately wanted to pursue a career in dance. However, my body did not allow that. After dance was on the back burner, I figured I needed to do some strength training — strength training that respected my physical boundaries, with safety and precautions, and that could strengthen and lengthen at the same time. I got into Pilates, like Marimba. I'm now currently teaching Pilates, hoping to work with hypermobile dancers, but also with non-hypermobile populations as well, to feed into their mind-body process through functional, intentional movement.

[05:24] Jennifer Milner: Excellent.

[05:25] Dr. Linda Bluestein: Fabulous. Everyone, of course, has a unique story, but we know that there are some common threads that run through most hypermobile stories. So, for example, who here has had that point in their career where they were so flexible that it was easy for them, and people envied their flexibility or their ability to do different things? Anybody resonate with that?

[05:51] Mariana J. Plick: I have a complicated thought as a result of that comment.

[05:56] Jennifer Milner: Excellent.

[05:57] Mariana J. Plick: I think people thought it was really easy. And they didn't know that gaining flexibility wasn't necessarily as difficult for me, but the other things that came along with it — which at the time I didn't even realize were correlated — were causing issues that just got increasingly problematic. I definitely think that I got a lot of jobs from being hypermobile, and people envied it a lot and still do, probably.

[06:33] Jennifer Milner: Mm-hmm. Sure.

[06:35] Marimba Gold-Watts: I would say there was definitely a period of time for me too where having that kind of extreme flexibility was definitely an asset. Not so much in my ballet studies, because I went to a ballet school where everybody was hypermobile — I wasn't the only one. But more when I came to New York and studied at Alvin Ailey. At Ailey, extreme flexibility is definitely considered an asset. If you could touch your head to your butt, or make your penché like six, seven, eight o'clock, it was really a wonderful thing. Suddenly something that I had felt was sort of a party trick was now an asset. I didn't really realize it was a liability until much, much later, when I started getting more injuries.

[07:25] Jennifer Milner: There is a sense, isn't there, that what you think of as a party trick — once the choreographer sees that, they're like, oh, you're going to be that girl. And so it's easy to always give you that piece of choreography, or to say, that's your special thing that you can do on silks, let's make sure we do it in every single thing. Or, oh, we're always going to end a group number with you in the middle doing a scorpion, or whatever it might be, right?
[07:51] There is that sense, and I think people sometimes see that and think it's not fair, because that comes easy to her and she gets to stand in the middle and do the cool-looking stuff. And I work so hard and nobody's ever like, oh great, port de bras — the things that other people work on. So there is that sense, I think, of people seeing that and going, wow, that's amazing, and being kind of envious of it and not realizing, like you said, Mariana, the things that go along with it that are not helpful — they can actually start to cause damage — or that it's not as easy as you think. The easy things you may not even be doing correctly.

[08:31] Dr. Linda Bluestein: Well, as a follow-up to that, is there anyone here who has had that moment when things stopped being easy and suddenly things became really hard? Does anyone have a story like that to share?

[08:45] Kyle Thompson: I can talk about something.

[08:47] Dr. Linda Bluestein: Great.

[08:47] Kyle Thompson: So when I was younger, I used to play a lot of sports — baseball and basketball. A lot of the benefits were being able to run fast, stretch out your arms, do splits while you're catching the baseball. It was really beneficial. But there was a time where I was just dealing with constant injuries. I had broken my growth plates in my ankles probably dozens of times. I was in boots and casts for years — probably from age 13 to 16 I was in constant boots.
[09:21] At that point I realized that my health was kind of deteriorating. It went from, oh, look at him, he can do a split while he's catching a baseball, to he's wearing a boot while he's catching because he's having so much pain. That was kind of the turning point when I realized that my life would probably never be the same — around the time puberty hit and growth plates were changing. I was suffering from a lot of pain, and it just wasn't something that became as easy anymore at that age.

[09:51] Jennifer Milner: Did others have a similar experience with the time that puberty hit — feeling that hormonal shift and feeling a change in your body where things just instinctively got harder, or maybe even got easier?

[10:04] Cailey Brandon: I feel like I had that in a sense, but puberty was so early onset for me. I was always like the fuller one in all of my classes, even though I was one of the youngest. I did feel like — as Kyle said — in boots and different things like that. And those also had repercussions: if you're wearing a boot that's two inches taller than your standing foot, and you have hypermobile hips, they skew out of place two inches. And then there's always this continuous cascade, and that's kind of how it felt.
[10:34] Also, kind of what Marimba was saying — when people see you stretching, I always loved Mondays because I came back from the weekend and my muscles were super loose. I could just stretch, fold my foot over, and everybody would be like, how do you come back on Mondays and do all of this? That was kind of my EDS day, I guess. I didn't realize it in the moment. I was like, I don't know why I'm so warm after letting my muscles relax. Obviously now I understand more about that. But just the depletion of health in general — seeing the back-to-back happenings of, why am I the only one getting injured? I took ample time, and it just didn't make sense.
[11:17] And when you ask if people are jealous of my hypermobility, I'm like, oof, no — because I was jealous of the non-hypermobile dancers that could actually function for more than two weeks at a time. But yeah, I definitely understand that.

[11:32] Jennifer Milner: I have noticed — oh, go ahead, Mariana. Sorry.

[11:32] Mariana J. Plick: I was just going to comment that I didn't do circus before the age of 13, and I also only did a couple of years of dance as a kid before my parents decided I was far too stubborn and difficult to partake in ballet class — which I really regretted when I started doing circus more seriously as a teen. I wished I had the ballet and gymnastics background that professional circus performers either really rely on or try to catch up with.
[12:12] But now that I've learned that I have EDS or a hypermobility disorder, I am really grateful, because I think there isn't enough information out there about dance, gymnastics, and circus training for people who have these disorders. It was probably to my benefit that I didn't start that kind of training earlier. I mean, it could be different if there were a lot of information available for young people with Ehlers-Danlos Syndrome who are training. But maybe I would have had a harder time starting with circus if I had a history in childhood with dance and gymnastics.

[12:50] Jennifer Milner: That's a good point. So, Marimba, you went from ballet to contemporary and modern dance, and you are now training dancers yourself — either as a teacher at Alvin Ailey or as a Pilates trainer who works with dancers. How has your hypermobility and what you went through made you a better teacher? How has it fed into what you have to offer now?

[13:12] Marimba Gold-Watts: Well, I think one of the ways it's probably made me resonate more with dancers who are going through all sorts of injuries is that I've had a lot of injuries myself. Often I can relate to them not just from personal experience, but because I've had to deal with my own saga of recovering. I have a little more empathy for people dealing with all sorts of injuries.
[13:41] On the other hand, because I have a dual background — I still teach dance, I still teach modern dance, and I also work in the rehab setting — I have a much better sense of what people are actually being asked to do with their bodies on a regular basis. I don't just have the perspective of, I'm hypermobile and I can help you organize your body. I also have the perspective of, I know what your choreographer is going to ask you, because I'm seeing them in the studio next to me telling you that they want you to touch your head to your butt or whatever it is. I can take that information and bring it all back to the Pilates studio and help my clients in that way.

[14:25] Dr. Linda Bluestein: That's an interesting point, too, because when dancers or other artistic athletes are asked to do these things — especially if people are starting to have some pain — how do you guide them or advise them? It's hard to say no, because then you probably won't get asked to be in that piece or have that opportunity again. But at the same time, knowing what you know about bodies and the need to be mindful, how do you approach that?

[15:02] Marimba Gold-Watts: I mostly work with people to find a different means to an end. If they want to do something really extreme with their body, I don't prevent them from doing it — that's absolutely up to them. But I try to help them find a way to achieve the same goal or aesthetic in a way that's much safer and healthier for them. If there's absolutely no way to do that, then we just cross-train like crazy so that they have as much support around their body as possible. They may still have to do something that's really extreme — I work with some circus performers also, and sometimes that's the nature of what they're doing for a living.
But we can cross-train. We can work on proprioception. We can work on all sorts of different ways of strength training to make sure they have as much balance around their joints as possible. And especially when I'm working with somebody who's more on the extreme end of the hypermobility spectrum, I also try to refer them to other support systems — people who can help with nutrition advice, functional medicine specialists — so that they're having a much more holistic approach to their health. It's not just, oh, don't do that split. It's making sure they have support surrounding their entire health journey.

[16:28] Jennifer Milner: Well, just to piggyback on that — you talk about trying to find a different way to do something, and I was wondering, Mariana, when you do your work, because you do a fair amount of freelance work, do you feel like you have the freedom when somebody asks you to do a piece — for a corporate event or whatever it might be — to say, I'm not going to include that trick, but let me show you a different trick instead? Do you feel like you can make it your own?

[16:54] Mariana J. Plick: Yeah, definitely. Part of why I've done so much work for myself is because I have so much more control over my schedule and my body. If I'm having a week where my back is spasming and I can't do a lot of the things I normally do, I don't have to accept jobs for that week. It's been easier for me than times when I've worked on contracts, although I like those too.

[17:24] Dr. Linda Bluestein: Well, that makes sense. And another thing we're excited to talk to you about, Kyle, is cheerleading. Cheer is definitely another one of those areas that prizes artistry but requires athleticism. Can you share with us how your hypermobility made cheer better for you — or how it made you better for cheer — and also how it was something that you had to compensate for?

[17:53] Kyle Thompson: Sure. There's not a lot of boys that join cheerleading, due to the superstition of guys being seen as feminine or whatever it might be. I always thought it was an interesting sport — being able to do a bunch of flips and lift up girls and do all that. I joined a gym, and the moment I got in there I was surrounded by everyone. They were always so interested when a new guy would join, because it's so rare to see them.
[18:19] I joined a bunch of tumbling classes, because once I get into a sport I just dive right in. I want to be the best I can be. A lot of the other athletes in the gym had ten-plus years of gymnastics experience, and they had learned to stretch their muscles and allow them to do things that they shouldn't be able to do. When I showed up, I was just kind of able to do them. A lot of my coaches were like, oh, it's just because you're a boy — you're fearless, you'll do anything. I think that narrative is kind of dangerous, because it wasn't just because of that. I had serious issues. The reason I was able to do that is because I was so hypermobile.
[19:00] It was an extremely huge benefit, though, because I was learning skills that took other people in the gym years to develop. I was doing things like backflips within my first week. It was just such a fun thing to be able to do things like that.

[19:21] Mariana J. Plick: Interesting.

[19:22] Dr. Linda Bluestein: And what about the athleticism part of it — developing the muscle strength to stabilize your joints and things like that? Was that something you found challenging, or were you able to manage and compensate for it?

[19:38] Kyle Thompson: So the first year I joined cheer, I actually had one of the worst injuries of my life. I tore, I think, three to four ligaments in my ankle. I had torn a tendon. I had destroyed my ankle bone and my joint as well.
[19:56] The problem was, yes, I was doing really difficult skills and I was being as safe as I could. I genuinely listened to my coaches and did everything right. I did the drills, I did the stretching, and there was just nothing else I could do. Another awful thing is that because I was so used to being in pain all my life from my genetic conditions, I actually landed wrong on my ankle when I was doing one of my tumbling skills. I heard a pop and I was like, oh, that's just my joint being weird — I'm so used to it. I actually continued tumbling on it for hours that day. The reason I destroyed my ankle so badly is because I didn't realize what I had done to it. I'm so used to my ankles being able to pop out of place, to bend in weird ways, and I just assumed I had done something like that. There was just nothing else I could have done. I trained weeks and weeks to do those skills, and it just happened.

[20:53] Dr. Linda Bluestein: And that's actually a super interesting point, because sometimes people don't realize when they have an acute event like that how bad it is, because it takes on average about 72 hours for the swelling to peak. It's going to feel worse the next day and then the day after that. At the time you've got the adrenaline rush, you've got the effect of the exercise on the neurotransmitters dampening the pain signals. So you're like, oh, I'm okay, I can keep going — and you're a driven person, right?

[20:56] Marimba Gold-Watts: Wow.

[21:31] Jennifer Milner: Well, and I think in general, a lot of hypermobile artistic athletes are very driven — they push themselves very hard. And we're also, like you said, Kyle, used to living with a sort of low-level amount of pain. We're used to dealing with that. Because the flip side, as Cailey has said, is that people are like, oh my gosh, you're always injured. If you really talk about your stuff and you're like, I think I should be in a boot again, or I can't see — the room is dark, should I finish the show or should I stop dancing? — those things happen, and either you're the one who's always like, there's a problem, or you just stop talking about it. So people don't realize it. You just keep going until, like you said, Kyle, you literally cannot keep going anymore. And people are just used to you plowing ahead and they're like, well, why didn't you say something? And you're like, I did — 47 times.

[22:27] Cailey Brandon: Yeah, I actually have a very similar story to Kyle's. Because the same thing — I just stepped onto a trampoline, barely just rolled my ankle, and I heard an audible pop. I was like, huh, and I was like, that kind of hurt, you know, just kind of like, oh, my ankles are weird, I pop them out all the time. And then about 12 hours later, I'd been running and I'd been cross-training and I'd just been to dance and I was on pointe. I came back home and looked down at my ankles, and one was just dark and the size of a baseball. I was like, okay, perhaps this is something.
[22:58] I just had no sense of it, because I was like, well, ankles always hurt on pointe. So that's normal. I didn't give any mind to it. And I think a lot of times that is our issue — we don't give a lot of thought to what is the continuous pain, and what is the threshold above that.

[23:19] Marimba Gold-Watts: I agree.

[23:21] Jennifer Milner: Mariana, as you've pursued a career as an aerialist, I know you've said you have had several serious injuries. You're still pursuing a career — how has dealing with those injuries shaped how you train as an artist, the choices you've made, the opportunities you get to pursue?

[23:45] Mariana J. Plick: Well, it's been interesting. I've had a lot of injuries. I've fractured my feet four times, had bilateral tendonitis in my hips and shoulders this year, bilateral shoulder surgery last year. I've sprained and strained my back. I've bruised my ribs — which happened because I put a barbell weight on my stomach while holding it doing sit-ups. I didn't think that would bruise my ribs for five months. But yeah.
[24:24] It's interesting because I feel like I really have to fight to make space for my body to exist in normal life and also in this weird, abnormal life I've carved out for myself that seems to match who I am. I've had to argue with coaches about what I can and can't do. There was a time I lost that argument and was pushed too hard and ended up in the hospital for two surgeries, and I missed my first big trapeze solo contract. And then COVID happened, so I missed out on my last trapeze performances of recent history, until I get my next job.
[25:12] It's taken me a long time to find that I need a coach who understands me and is really careful with me — and looks to be more careful than I am with myself. Because like you all said, there's not a lot of sensory attentiveness to tearing ligaments and muscles while we're doing our work. It's really easy to have the adrenaline rush and the endorphins of doing what you love and miss it. I just took six weeks off of training and returned today, because I thought I had re-torn something and I didn't — thank God. But it's like, all day I'm looking out to make sure I don't get injured. I spend three hours a day doing physical therapy, five days a week. I just wish I knew all this sooner when I was younger, when I first started.

[26:17] Jennifer Milner: Well, Marimba and I do very similar work — she and I are friends — and Cailey is getting into this as well. Part of what we see from the other side of the table is working with artists like you who prefer not to think about your boundaries. You want to be able to just get out there and go and be strong. And that's part of your trainer's job — to help you find your strength and find those boundaries instinctively so you don't have to think about it. It is harder for people with hypermobility to feel where those boundaries are. It's constantly that educating: are my arms straight? No. Are they too bent? No. Are they too straight? No. It's constantly trying to find that over and over and over again. That's part of our job — to help you guys find that spot, because it is so hard for people with hypermobility to feel it. It's so hard to sense where your ends are in space when your end is so different from everybody else's.

[27:17] Mariana J. Plick: Yeah. Another thing that really helped me was working one-on-one with a coach instead of group classes, even advanced ones. I had to move countries in order to afford that, but it was completely, one hundred percent worth it.

[27:38] Jennifer Milner: You are saying that the right coach and the right input makes all the difference.

[27:43] Mariana J. Plick: Having one-on-one coaching makes it easier for me personally to think about where the boundaries are, communicate with the coach, and have training that's specialized for what my body can't do — and what it would be good at doing with the right support.

[28:00] Jennifer Milner: That makes sense. Well, Cailey, you are pursuing a career as a Pilates teacher, as you said. Going through all of this at a young age — you said you were 16 — how did that experience shape what you wanted to do next and what you wanted to do with that information and where you are with your body?

[28:24] Cailey Brandon: So when I quit dance — or I guess dance quit me, essentially — I was kind of at a loss. Like we've mentioned on the podcast before, there's a specific identity tied to it: when you introduce your daughter and say, hi, this is Cailey, my ballerina — that's who you are, that's your whole title. So when I was dissociated from that and I was starting college — I'd graduated early from high school at the time — I came to this identity crisis. And if it wasn't dance, I didn't want to move. I figured, well, if my body doesn't like movement, why move it? I kind of became a shell. Even with all of the studies that show that movement heals the mind and the body, I was a little bitter about it. If I was going to continue to get injured, why move? And so I kind of went into a depression state there for a long while, and with that came weight gain and more injuries, because I wasn't supporting my body or giving it the boundaries and support that it needed.
[29:39] I had already been in Pilates physical therapy for my ankle and rehabilitation for my peroneal tendonitis, which ultimately put me off of pointe. I'm missing a groove in my ankle, so my tendon flattens out like a ribbon instead of going into the groove — that's what I would have needed surgery for if I ever wanted to pursue pointe again. So I kind of ditched that idea and asked myself, is dance really worth my life? Is it worth that time and effort if it's only going to get me to the next checkpoint of my next injury?
So how could I pursue something long-term that would not only support my physical and mental health, but also align with what I want to do in psychology and body cognition? That's kind of where everything came together — when I was doing Pilates physical therapy and saw that it not only benefited me but gave support to the muscles closest to the bone and respected the body's limits. I had been doing Pilates as cross-training for years, and I figured it was just to strengthen parts of my body that ballet didn't address. I never really saw the true benefits of the lengthening and strengthening until I delved deeper into it.
Through that, I really found that my body had found its voice — something that would respect its boundaries, support it in the correct ways, and not push it to its limits. Not the ungodly hyperextensions at the wrist for first position, or the things I had forced myself to do thinking they were beautiful. Finding that mind-body connection and being able to be aware of myself within who I am, rather than trying to fix what I see in the mirror — that was a big impact on me. So I wanted to share that with other dancers. I almost felt betrayed at that point, betrayed by my own body. It had answered a lot of questions that had been lingering in the back of my mind, but it was still like — as Mariana said — if I only knew sooner, the things I would have done differently. However, because that's in the past: how can you rehabilitate? How can you stabilize? And how can you pass along the knowledge you wish you had to younger dancers growing up, the way you and Marimba do right now?

[32:09] Jennifer Milner: And isn't there something to — because Dr. Bluestein and I have both been through a variation of this journey as well — isn't there something to, let's make this suffering mean something? The things that we have been through and the life lessons that we have learned, let us pass those on to other people and let them help others. I can definitely understand that desire to pass that on and to make use of what you've been through. Thanks.

[32:11] Cailey Brandon: Absolutely.

[32:44] Dr. Linda Bluestein: We've talked a lot about musculoskeletal issues that people have had to deal with throughout their lives. What about other issues? Lots of people experience other comorbidities with hypermobility disorders — such as POTS, postural orthostatic tachycardia syndrome, gastrointestinal problems, and lots more. Does anybody have some of those other issues that they're willing to share about?

[33:13] Cailey Brandon: All of the above. Yes, I have POTS from a very young age. When I was dancing and standing for long periods of time, there was really no one thing that triggered it. Maybe my brace was too tight, or maybe it was too hot in the room, or, is your blood sugar up? At some point it would just kind of happen. It was more spaced out, and I never really understood why I was passing out. Maybe I was locking my knees. But there were times where I would literally fall to the ground, and I actually had a neurologist tell my mom, or ask my mom, is she getting enough attention at home? It was such a perpetual event. I did feel kind of crazy at that point, because I was like, yes, I do enjoy collapsing in the middle of the floor and eating Hershey's while everybody else continues with grande allegro, right?
[34:17] But yes, having the GI issues on top of all of that comes with the dysautonomia as well, because POTS is directly correlated with gastroparesis and different things like that. And just the simple comorbidity of not being able to heal in time. I have dental issues that have been going on for seven years, and my endodontist is like, you have had no bone growth since you were 12 or 13. Seeing that is a little frustrating — knowing that you can't trust your body to take over like that. And so that comes with a ton of different aspects of all of those comorbidities.

[35:02] Dr. Linda Bluestein: And I imagine there was a period of time — before you knew the names of some of the things going on — when you thought, oh, I don't know if these are actual issues or my body is just kind of wonky. Was there a period of time like that?

[35:17] Cailey Brandon: Oh, for sure. I used to sit in the back seat on my way to dance and just feel cranks in my neck, cranks in my elbow, an ache in my knee. My nine-year-old self would think: if I were in somebody else's body, do people experience this much pain on a regular basis? The metacognition of it all — being able to reflect on yourself and think, where do I feel all of these different things? Am I just a wimp? Is this just a regular thing and I'm just a sissy about it?
[35:54] And also with the perpetual injuries in dance, I thought, maybe people just push through. But when the X-rays are showing that I have torn tendons and fractures, I was convinced that there was something wrong. But again, there was also the thought of, okay, maybe I am crazy. Maybe I'm just the odd man out. Maybe I just need to get over myself. There was definitely a factor of that for sure.

[36:19] Dr. Linda Bluestein: My husband told me once that I had so many issues that my issues had issues.

[36:23] Mariana J. Plick: Yeah.

[36:25] Dr. Linda Bluestein: It was hard for him to understand, especially the extra musculoskeletal stuff, and especially before getting the diagnosis. So we're talking about the extra-musculoskeletal things that people often face. Does anyone else have experiences with that that they would like to share?

[36:45] Mariana J. Plick: Sure, I'll go ahead. I also have gastroparesis — I've only met a couple of other people who know what that is. I get lightheaded quite a lot, but I don't have a diagnosis for POTS as of this current moment. I do have vocal cord dysfunction, which I wanted to mention because Jennifer is the first person I've ever heard say she's met multiple people with this condition — the other being a pulmonologist at Yale I spoke with. Basically, my vocal cords try to shut when I inhale if I'm exposed to pollutants or anxiety. Which is really annoying. I thought it was asthma and tried asthma medications like corticosteroids, which can weaken your bones and potentially cause more injuries, and which don't work for vocal cord dysfunction. It's estimated that maybe half or more of all people with an asthma diagnosis have this instead.
[37:45] Also, just generalized anxiety. I'm nocturnal. All these little things that I never imagined were correlated with one another — aside from being a very strange, abnormal person — all related. The GI stuff: I went on a really strict vegan diet when I was about 13 and it really helped me, and gluten-free later. I eat a really selective diet, and it's the only way I can manage the stomach issues.

[38:23] Jennifer Milner: That makes sense. And as we were talking about earlier with the musculoskeletal issues — it's all of these small things until they collect into one big thing. At the time you still think, I'm crazy, everybody must hurt this way. I think it's the same with these comorbidities. If you have MCAS, or if you have POTS, it's just these little weird things. Oh, Cailey faints in the middle of class. Oh, Mariana can't breathe if she's around paint fumes. Little things that you think, oh, it's probably no big deal. But then you start to pull those threads together and realize there is something bigger going on. And there's usually that moment of finding that one person who pulls the threads together.
[39:09] So did you start pulling the threads together yourselves, or did you luck into finding a doctor or a medical professional who was like, hey, let me ask you some other questions while we're talking about your ankle? How did you get help for the other stuff?

[39:22] Mariana J. Plick: For me, I was very frustrated with the medical community for my entire life, because they thought I was exaggerating or faking it. I got called a hypochondriac. They tried to treat me with medications that would have never worked, and I knew they weren't working. For a while, everyone thought people who were gluten-intolerant but didn't have celiac disease were just making it up and wanted to be trendy. Vocal cord dysfunction, or being sensitive to chemical fumes — doctors thought that was a hoax.
[39:59] It wasn't until I started dating my current partner, who has a couple of friends with Ehlers-Danlos Syndrome — including a really close friend who is continuously hospitalized for it — that my partner pointed out, you know, you have a lot of the same ailments that Willie has. Then, as a couple of years went by and the symptoms got a bit worse, I eventually talked to Jennifer and she was like, all of these things fall under this category.

[40:37] Cailey Brandon: I think that's a really great point to bring up. On Doctor's Day, I was kind of reflecting as I was looking through all the happy Doctor's Day posts about respecting all the doctors. And I thought the same thing — growing up, it's difficult to come to terms with all the doctors that looked you in the face when you said something was wrong. My nickname with my PCP, my orthodontist, and everywhere else was Fluke, because you see these medically trained professionals and they look at you with their eyebrows scrunched and they're like, "We have never heard of this before." And you're like, I'm serious — these things are happening.
[41:18] That's a really great point to bring up, and I really hope that more doctors will come to understand that it's all related. To answer Linda's question: it was a lovely Jennifer Milner who kind of spoke with me about it. I was standing in front of her and she was sitting on the Cadillac — the glorious Cadillac of Pilates — and she started asking me all these random questions. And I was like, yes, my skin stretches. Yes, I have weird teeth things that happen. Yes, I can put my leg behind my head. And then it got more and more involved, with me doing my own research and talking with cardiologists, and it was just one big light bulb moment. It was an answer to the majority of my battles.
[42:06] And then as I branched out and started telling doctors, oh, I have a hypermobility disorder, they were more likely to understand than if I came in without that framing and waited for them to guess it. Before I knew my own diagnosis, it was really difficult, obviously — I went from doctor to doctor to doctor, and it only took them 16 to 18 years to actually diagnose me with what I had. I had seen multiple professionals on various different things.
[42:46] But I also had one of my cardiologists' interns — she had me on the table, she said, lift up your shirt, let me pull your skin. And I was kind of her guinea pig. And she was excited because it's so much in the works right now — that's why we talk about the new findings of it all, because there are a lot more things to know about it. I think just finding the intrigue, and hopefully doctors with the same intrigue, will help us come to understand that it's not just in our heads. We're not crazy.

[43:20] Jennifer Milner: Well, that's a nice segue into talking about something else that comes along with hypermobility a lot. People with hypermobility have a much higher statistical likelihood of having anxiety — which a couple of you have mentioned — as well as obsessive-compulsive disorder, depression, eating disorders, and other mental health issues. If anybody wants to address that and their personal experiences, we would love to hear how you have coped with any of that.

[43:52] Kyle Thompson: I'll talk about something. So when I was first diagnosed with POTS, it was very confusing. I didn't know how to cope with it. I first started seeing a therapist around — I think I was 17 — and it really helped. I wasn't diagnosed with anything specific, but it felt nice to talk to someone about my issues. And then it kind of spiraled downwards when I was diagnosed with my tumor. I was extremely depressed, had a lot of anxiety. I wasn't sure what was going to happen to me. I had been told I could have been paralyzed, and there was just a lot that came at me all at once. I was getting to the point where I was like, I just don't even know if I can live anymore. It's just too much.
[44:28] I told my mom, and she said, we'll get you to see another therapist. I started seeing this one lady, and just being able to talk about what you're going through — even just saying the words, I just don't want to live right now, out loud — can really open your mind to figuring out why you feel like that, what you can do to help yourself, and better ways to manage. I had no stress relievers. I was bedbound for months due to my illnesses. There was nothing else I could do. But the one thing I always had going for me was my therapist. I could always talk to her and figure out ways to ease my mind. It's just an extremely beneficial system to have someone to talk to.

[45:16] Jennifer Milner: That's great. Thank you for sharing that. It is hard sometimes to take that first step and talk to a stranger. But hypermobility disorders and everything that comes along with them, as you said, can be so overwhelming that it really does help to have someone to process it with. So thank you for sharing that.

[45:35] Mariana J. Plick: I'll just add that I found it really helpful to have a therapist also. Mostly it's been online as of the past couple years. And I also meditate every night — literally every night, for years. Thirty minutes, maybe four minutes if I'm really tired, to be honest. But just touching base every single day helps.

[46:03] Jennifer Milner: It does. Dr. Bluestein, that's one of the things that you talk about as well when you discuss pain management. Do you want to elaborate on that a little bit?

[46:14] Dr. Linda Bluestein: Right. So with someone who has dysautonomia — and POTS is one of the subtypes — if you can train the dial of your sympathetic-to-parasympathetic nervous system, if you can train that at certain times of the day to be biased toward the parasympathetic, or toward increased vagal tone, or slowing down your heart rate, which improves your digestion, then over time it can actually make changes in the brain. We know that Buddhists are actually able to make structural changes in their brain by doing that. So that's a really great thing to do, because that really is one of the things that has been shown to be beneficial with POTS.
[47:02] It is challenging, because oftentimes when we bring this up, someone might misinterpret it as us thinking it's all in their head. And it's like, no — but what's in your head does matter tremendously. People with hypermobility are prone to anxiety; those are very highly correlated. But if we can do these kinds of things to help combat that, it can help improve a lot of symptoms, including things like gastroparesis.

[47:30] Jennifer Milner: That's so interesting. So, you guys have shared some really, really great stories tonight — not great like, wow, that's so fun that you got to have gastroparesis, but great like things that will really resonate with a lot of our listeners. As you've gone through this journey, what sort of advice would you give your younger self if you could? Would you do things differently? And what advice would you give people now who are listening and thinking, I don't know if it's worth trying to move forward, I don't know how to seek help, I don't know if I have this or not? What would you say to these people?

[48:09] Marimba Gold-Watts: I would say the most important thing is to start looking for a team of people who can help you figure out how to have balanced support. Your team has to be pretty diverse. It's not necessarily just somebody who works on your body — you need a mental health professional, and somebody who understands why you can't digest certain things, and maybe an eye doctor who can work with the fact that your lenses are always changing, and a dentist who understands that your teeth are going to shift, and so many other people on your team who understand all of the comorbidities and all of the other issues that can come with having EDS or any sort of hypermobility spectrum disorder.

[49:00] Kyle Thompson: I would also say one thing about how to help yourself now: definitely find specialists. One thing I always had trouble with was growing up talking to primary care doctors and childhood physicians. Yes, they're incredibly smart and they went to medical school, but they don't always have the grasp on your illnesses to think outside the box and say, oh, it could be this rare genetic condition I learned about in my training. If I had known at such a young age what seeing a specialist would do, how different my life would be now — because I found Dr. Bluestein when I was 20 years old, and I just couldn't imagine if I had found someone like her when I was 13 and struggling with so many different issues. If I had started on certain medications or learned how to move my body in safe ways, I'm sure the vast majority of my issues now could have been avoided, just because some doctors can't think outside of the box, or just won't even try.

[50:04] Dr. Linda Bluestein: Thank you, Kyle. That's very kind. And I think those are good points — everyone needs somebody to really advocate for them hard, someone in their corner who is going to help them find pivotal people on their team who will think things through very thoughtfully. So thank you for sharing all that.

[50:32] Kyle Thompson: Of course.

[50:35] Mariana J. Plick: I've been thinking about an answer to this, and I don't think it's an easy answer, but I do have some thoughts. Now that there's more research, there's the book Disjointed that you co-authored. There are podcasts like this. There are doctors who are aware of the boundaries and peculiarities of these disorders, and coaches too, who either have these issues themselves or are aware of them.
[51:08] I think for anyone — figuring out that you have Ehlers-Danlos Syndrome, or a hypermobility disorder, or POTS — is really important as soon as you can, before you start your training if possible. And then knowing who you are. For me, I know I'm a sensitive person and I need a coach who's also attuned to that, so they know when I might be injuring myself, and they know that I don't need to be pushed — I push myself too much. I need to be cautioned a bit, but also encouraged to keep going.
[51:41] And just find someone in your corner in your art or your sport who will stand by you and understand that you need to take breaks, you need to go slower, but you will get there. You're not weak — you're just different. Your body does unique things, and that can be great for dance and for circus.

[52:01] Jennifer Milner: That is very true. I would also say — Marimba and I both work with pre-professional dancers at a very high level. I always encourage parents: it's too soon to start your 9-year-old in a super rigorous training program with cross-training and all that extra stuff. However, if you have a kid who is super bendy, or is constantly in pain, and your parent gut is saying, I think they need something else — listen to that. I would much rather parents bring me their 12-year-old and say, it's just little twinges, aches, and pains, but I thought maybe we could start to strengthen her. I would much rather do that than deal with a 15-year-old who has developed bigger aches and pains and has to work so much harder to learn how to control things.
[52:56] So for the younger audience: if you feel it and you feel like there's something going on — as Cailey said, she knew from age 9 that there was something going on with her body and that she was different, and Kyle said it's not natural to be able to do the splits when you are pitching — if you notice that and you feel that, it's okay to speak up and ask for outside help and try to find answers. There are so many great people out there who can help you. You just have to find that one, and that one person will help you find another and another. Soon you'll have a whole team together.

[53:33] Dr. Linda Bluestein: I often say it's never too early to start on those kinds of things. I'm always careful not to over-medicalize — obviously, we don't need to put people on a bunch of medications if it's not necessary. But by somebody knowing sooner rather than later that there's a potential issue, they can really pay attention to their diet and be more mindful. I love meeting young people like Kyle, because it makes such a big difference and you can really change that person's trajectory for the rest of their life. If we ignore what's going on with younger people, they go through years and years of lack of validation, pain, and suffering that is not necessary — or at least a lot of it isn't.
[54:27] So does anyone else have any advice they would give their younger selves, or that they want to give to people now who are hearing part of themselves in your stories?

[54:41] Cailey Brandon: I would definitely say the same thing to my younger self and to others. There are a lot of people out there who — if they're not in dance, or not in any particular community of physical awareness — it just looks different, because you're not regularly moving your body and discovering the different facets of your bendiness. But people who do, and who see themselves as just a little funky, a little wonky here and there, having these certain things: you're not crazy, and it's all connected.
[55:20] There are so many different little things that can pull from the musculoskeletal to the bendiness itself, from the obsessive-compulsion and perfectionism to the version of wanting to control everything external because there's so much you can't control within you. And for me it was that heightened internal sense of awareness. Even especially with POTS: if people have POTS and their blood pools and their legs start to swell, for me that comes with the multi-dimensional aspect of how it turns into social anxiety and body dysmorphia — my calves feel huge, are they huge? All of these things you feel and experience are most likely connected.
[56:13] Not that there's one answer to it all, but the research and the support available can help you find those little tidbits. It's all like one big spider web — a big fascial web. Just find your niche and understand yourself better, and also give tidbits to other people who struggle with the same thing. I actually had a non-dancer tell me they started rock climbing — they have Ehlers-Danlos or a hypermobility disorder — and they started rock climbing. I thought, that's great. It not only challenges their upper body strength, but it develops proprioception of where they place their hands in front of them without having their feet underneath them. Just find your expression, whether through art or different activities, and know that you are not put down by it all.

[57:06] Jennifer Milner: Well, we really appreciate you guys speaking up today and sharing your stories. I know it's not always easy, and we are really grateful for you offering to chat and share your experiences with our listeners.

[57:20] Dr. Linda Bluestein: Yes, we are extremely grateful. Does anyone have anything they want to add before we wrap up?

[57:27] Marimba Gold-Watts: I would just say that one of the things that was most important for me is figuring out how to be my own advocate throughout this whole saga of understanding my own health. Having a team is really important, but even within your team, continually learning how to advocate for yourself — and that's something most of us aren't taught at a very young age.
[57:51] When you're younger and starting to deal with all of these issues, a lot of times you really don't know if it's in your head or not. You want to advocate for yourself, and you know something is off, but you don't quite know what. In my experience — and I don't know if others had this too — my mom and my grandmother also have EDS. So when I would describe things to them, they didn't necessarily see it as abnormal because they experienced it too. That was tricky, because I thought, oh well, my mom has it, so it must be normal. I didn't really pursue it until I started having significant issues. So if something doesn't feel right, it probably isn't. Speak up and try to figure out how you can get to the bottom of it.

[58:45] Jennifer Milner: Great advice.

[58:46] Dr. Linda Bluestein: What you said was so important about the parents and grandparents. The tricky thing is — and I don't know if this fits with your experience — it definitely fits with my experience personally and professionally that the older generations are often less affected than the younger generations. Those of us who take care of a lot of people with EDS and related disorders believe this is multifactorial. One factor is that the quality of the soil isn't as good, so in general people are getting fewer nutrients in their diet. Our environment has become more toxic with different chemicals and things like that. There are definitely more stressors and a lot of different exposures. So it's also challenging because even if you identify with older family members, it's easy to think, but they're okay and they've dealt with it, so it must not be that bad. But oftentimes it is worse in the younger generation. I just wanted to mention that.
[59:47] Well, thank you so much to every single one of you — Mariana, Cailey, Marimba, and Kyle. We are so grateful to you for sharing your experiences, and you're going to help a lot of people by allowing them to identify with different parts of your stories. We just are so grateful.
You've all been listening to Bendy Bodies with the Hypermobility MD, and we really appreciate everyone coming on the program today. Thank you so much.

[1:00:16] Jennifer Milner: Thank you, everyone.

[1:00:16] Marimba Gold-Watts: Thank you so much for having me.

[1:00:16] Cailey Brandon: Thank you. Yes, absolutely. Thank you so much.

[1:00:19] Dr. Linda Bluestein: Thank you for joining us for this episode of Bendy Bodies with the Hypermobility MD, where we explore the intersection of health and hypermobility for dancers and other artistic athletes. Please leave us a review on your favorite podcast player. Remember to subscribe so you won't miss future episodes. Be sure to subscribe to the Bendy Bodies YouTube channel as well. Thank you for helping us spread the word about hypermobility and associated conditions. Visit our website at www.bendybodies.org for more information.
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[1:01:11] The thoughts and opinions expressed on this podcast are solely those of the co-hosts and their guests. They do not necessarily represent the views and opinions of any organization. The thoughts and opinions do not constitute medical advice and should not be used in any legal capacity whatsoever. This podcast is intended for general education only and does not constitute medical advice. Your own individual situation may vary. Do not make any changes without first seeking your own individual care from your physician. We'll catch you next time on the Bendy Bodies Podcast.