Caring for the Adolescent Artist

[00:35] 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. This is Jennifer Milner here with co-host Dr. Linda Bluestein. And before we introduce today's guests, we'd like to first remind you 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, your family, and your providers. We really appreciate you helping us grow our audience in order to make a meaningful difference. This podcast is for you.
[01:32] So this podcast, we're going to do things a little bit differently. This podcast marks the 1-year birthday of Bendy Bodies. Happy birthday! And we want to take this opportunity to introduce you to the Bendy Bodies team and hear from them. So Bendy Bodies is growing in exciting ways, and we want you to follow us on Instagram and Facebook so you don't miss out on anything. But we are obviously growing with team members, and we are going to chat with them today.
[02:02] The topic is caring for the adolescent artist, and we've got some experts in this field with us. First off, we have the founder and co-host of the podcast, Dr. Linda Bluestein. Always happy to be at the microphone with you, and with you as well. Welcome, welcome back. And we are also chatting with Aidan Leslie, a former pre-professional ballet dancer, a crazy Bendy Body, and EDS Wellness Ambassador for Bendy Bodies. Aidan, lovely to have you here.

[02:31] Aidan Leslie: Hi, thanks for having me.

[02:32] Jennifer Milner: Absolutely. And then rounding out our team is another Bendy Bodies team member, nutritionist Kristin Koskinen. We've been fortunate enough to have her share her expertise more than once on this podcast. Kristin, it is always awesome to have you here.

[02:48] Kristin Koskinen: It's awesome to be here.

[02:51] Jennifer Milner: Today's topic is one that is big in the arts and athletic world. It seems like dance, circus arts, skating, gymnastics, what have you, is becoming more and more competitive at an ever earlier age. We are demanding tricks and schedules from 12-year-olds that we weren't even requesting of professionals in the past. On its own, that bears discussion. But when you add in training somebody on the hypermobility spectrum, the potential pitfalls just increase exponentially. So let's talk about some of these possible minefields and how we as parents and teachers and medical professionals can help these young artists to avoid them.
Aidan, I would like to start with you. When did you first notice that your body had different requirements than dancers your age, and how did you deal with that?

[03:50] Aidan Leslie: When I was younger, especially when I was 5, 6, and 7, I could do a lot more things than other dancers really couldn't. It was kind of a good thing — I was always in the front line in the center doing a scorpion or some crazy extension. And it was really great because there wasn't a lot of strength being asked. It was more tricks and flexibility. And then as I got older, and especially once I started pointe and choreography started becoming more challenging and more and more was being asked of me as a dancer, I started to notice that some of the other dancers were starting to excel at things that I was struggling with. One-legged relevés terrified me. I just didn't have the structural stability on one leg to do on pointe.
[04:33] So when I was about 14 and I was starting to do more challenging roles, I started noticing that I couldn't keep up without putting in extra work outside of class or even modifying in class and rehearsal. I was always sort of aware from a very young age that my body had different limitations, but also different strengths than other people did. But it was once I started dancing on pointe and got a little bit older and more advanced within the ballet world that I started noticing that my body needed some extra help.

[05:07] Jennifer Milner: And so what did you do about that?

[05:10] Aidan Leslie: I started working with you, actually, Jennifer. You came to my studio post-Nutcracker one season when I was 14, and we sort of did a recovery class with my company, and we really hit it off. So I approached you outside and said, hey, I'm starting to do really challenging roles — could you help me feel better about what I was getting myself into and what was being asked of me? And I started working with you, and I started getting into regular physical therapy sessions, and I started getting into more cross-training classes. I was doing extra cross-training ballet exercise classes outside as well. So I started having to put in a couple extra hours, but also make sure that I was staying and working with good doctors who knew that lots and lots of rest wasn't always the answer. I had to find my right crew and my right team to help take care of me.

[06:10] Jennifer Milner: And that was around age 14, is that right?

[06:14] Aidan Leslie: 14 or 15, yes.

[06:17] Jennifer Milner: So Linda, is this something that you are seeing, that there are dancers and athletes that need professional intervention at earlier and earlier ages?

[06:28] Dr. Linda Bluestein: Definitely. Exactly what Aidan described. I'm picturing in my mind a dancer that I danced with in college, and she was crazy flexible but didn't have strength. And now as a physician, what I see is dancers running into problems very similar to what Aidan is describing at those young ages. And I think one of the big contributing factors is that the performing arts are so visual. Now we have literally at our fingertips, 24/7, 365 days a year, access to all of these things — on Instagram and YouTube and reality TV shows and competitions. When I was growing up and I was dancing, we didn't have access to these things. We didn't really see what other dancers were like until we went to auditions.
[07:16] So I think now dancers are pushing themselves harder and harder because they keep seeing these things in their face all the time. The level of competition just keeps escalating. And for hypermobile dancers in particular, exactly as Aidan described, they will excel when they're younger, but then it can become more and more challenging, especially when they go through puberty. Puberty can be very difficult because of hormonal changes that happen and things like that. So it's very common.

[07:49] Jennifer Milner: So, Kristin, you also work with a lot of adolescent dancers in your practice. How do you see this population as lacking proper nutrition or proper fueling? And how can their support team help remedy that?

[08:10] Kristin Koskinen: Well, when we talk about dancers who fall somewhere along the spectrum of Ehlers-Danlos syndrome, their issues may not just be related to fueling as we think of it for the artistic athletic component, but they can also be influenced by some of the GI symptoms that we see that come along with Ehlers-Danlos. So any number of what we might put under the umbrella of irritable bowel syndrome — chronic gut issues, tummy aches, that kind of thing — mast cell activation, any sorts of inflammatory diseases. And compounding this with the image that they want to meet when it comes to being a dancer. Like Dr. Bluestein said, these images are in front of us all the time now. And in the dance world, it's been part of the culture and history, especially in the ballet realm, to talk about line and thin and things like that.
[09:10] So these dancers who really need to be addressing their body very specifically to help with connective tissue health, to support the strength, to support the extra training, may be distracted by dieting. Their support team — it's a much more robust request than maybe what we're looking at in a dancer who doesn't have these same hypermobile concerns.

[09:41] Jennifer Milner: So with the people that come to you, Kristin, who may have GI concerns — are you usually the first person that they are talking to about any issues with hypermobility spectrum? I know that for my practice as a Pilates teacher and as a ballet coach, I'm usually the first person to say to them, you know you're hypermobile, and have you considered that there might be more that you need to investigate? So I know for most of the people that I work with, I'm the first person that's had that conversation with them. Are you usually that first person, Kristin, or have they already had that conversation with someone else and been referred to you?

[10:25] Kristin Koskinen: Both. Sometimes with dancers, I am the first person. So if a dancer comes to me — maybe a professional dancer or a pre-professional about to make that transition — and they're concerned about weight, or they've got this bloating that they just can't tend to, as part of the intake process I ask some questions and it starts to lead to, so you can touch your head to your butt and your thumb does this thing and you can do these circus tricks — we may have some other underlying issues.
[11:04] And on the other end, a lot of times I'm the end-of-the-rope person where they've tried everything else. It's, well, maybe it's a diet thing, or it's a referral where another professional — whether it's you or Dr. Bluestein or a physical therapist — notices that their client is at a stopping point with recovery, or can't get any farther, and they know it's a food component and a nutrition issue. So I will say it varies. I've seen it kind of all along that line.

[11:31] Aidan Leslie: I have a question for you. I know I really struggled when I was about 15 and started trying to make things a bit more professional and inching towards that end goal. I couldn't put on muscle for the life of me. I was really struggling with reaching that point where I could start building muscle. And I started seeing a nutritionist and everything changed in like one summer. I started upping protein and switching things around, focusing on hydration. So do you see a lot of dancers that have problems putting on muscle as well, particularly hypermobile ones?

[12:14] Kristin Koskinen: Yes, that is a big concern because they want to maintain muscle mass, and they understand that this is part of strength. And absolutely, I see it not only with hypermobile dancers but also with dancers who may be referred to me because of a diagnosis like scoliosis. When we bring in those extra components of translating the idea of "you need more protein" to how can you make that work and how can you do that within your schedule — which is usually really busy — and if you're hypermobile, and not only do you have class and rehearsal, but you also have specific training, say with your ballet coach, Pilates, and that kind of thing, the dietitian can help find solutions to make it work. And I'm glad to hear that you were able to find someone who helped you work through that, Aidan.

[13:05] Dr. Linda Bluestein: I'm really glad Aidan brought that up. I just want to say that part of the challenge there is if you cannot put enough load through a joint to get the muscle to be stronger, the nutrition component of course is essential, but that's also part of the problem — if the tissues can't sustain that load, then the body gets stronger not in the activity phase but in the rest phase. So it has to be able to do the activity and then have the rest and recover. That completely makes sense what you're saying, Aidan.

[13:40] Jennifer Milner: Well, and I see that a lot too. I'll have directors or teachers get in touch with me and say she needs to build muscle, make her build more muscle. And I'm like, I can't just make her build muscle. I can't just say, let's do 10 more hamstring curls than we did last time so that your hamstrings get bigger. It's that sweet spot — as you guys know — of pushing them enough but not too much that they get injured and then they're out for 3 months, or not so much that they don't have time to recover properly from it, as you said, Linda. So it's working with somebody who knows what that sweet spot is and not ignoring the nutritional component of it as well. It doesn't matter how healthy you are with your activities and your rest and all that if you're not fueling yourself in a way that's going to help your muscle tissue grow, right?
[14:30] So Linda, we're talking about where on the scale we usually get people and where we see them — like at the beginning or at the end. Do people usually come to you after having been through 3 or 4 other different doctors, or are you the first person that says, hey, there might be an issue? Where do you usually see them?

[14:48] Dr. Linda Bluestein: Usually most of the people that I see already suspect that they have Ehlers-Danlos syndrome or a hypermobility spectrum disorder. They've kind of found this information themselves and they suspect that it might apply to them, and then they stumble upon the podcast or other things that you and I have done, that the team is doing, and then they reach out for more information. It's rare that I would be the first one to bring it up to them, but a lot of times they have seen many, many other doctors and many other specialists.
[15:24] I also get phone calls from colleagues — I had a call from a colleague this past weekend. He said, I saw 3 EDS patients in my clinic this past week, but I don't feel qualified to diagnose them, and so I need to send them to you. Do you know anyone else in your area? And I said, well, I know someone in Madison, but I don't know anyone else in this immediate area. So finding somebody with that expertise definitely can be challenging.

[15:51] Jennifer Milner: It can be, and I think it's even harder when it is an adolescent, a minor. And the parents may or may not know enough about what's going on to even know what questions to ask. So, Aidan, we were working together when you first started kind of figuring out — you knew something was different, you knew something was wrong and that you needed outside help. So you sought outside help. We started working together. I started referring you out. At what point did you find that strength or courage — or whatever it is — to start advocating for yourself in the classroom as well, and not just saying to your mom, "I need help," but being able to speak up in the classroom and say, "No, I'm not doing that again," or "That's too many roles" — which, most people are like, oh no, too many roles... but you know what I mean — "That's too much work for me to be doing." Where did that come up and how hard was that?

[16:47] Aidan Leslie: It was sort of two things that had to happen simultaneously for me to get there. The first was that it reached a point where I was managing and I was doing well with all my outside help, but there came a point where I was learning 8 roles in one Nutcracker performance and all of this outside stuff and all these rehearsals, and I physically couldn't do it. I knew that if I wanted to reach that end goal of performing on stage, I had to adjust something and modify and advocate for myself in the classroom and rehearsal period so that I would make it to the end.
[17:18] But also, the more difficult aspect of that was that I didn't really reach the needed maturity level to start advocating — really, really advocating for myself on a pretty much daily basis — until I started having teachers whose teaching style and preferred ballet technique did not work for my body. When they were asking me to do specific steps or stretches or combinations that my body couldn't handle, I started having to step up and say, can I not do this? Can I not do that? Can I mark this stretch? Can I not jump today so that I can do 6 hours of rehearsal afterward? It really came down to the fact that I just couldn't work with that particular technique constantly and still do what was asked of me.
[18:06] So it was a combination of both of those things happening. And it was very difficult. No dancer wants to stand up and say, "Hey, can I not do this?" I think everyone's terrified of the repercussions — what if I get this role taken away? What if they don't use me again? That can be terrifying. But I had to remember that if I didn't start speaking up — and it wasn't big things, I wasn't asking to not dance for 3 weeks and then do the performance right after — it was little things here and there. And I had to remember that I was doing this so that I could go on stage and be my best and do what was being asked of me, and do it better maybe than they were thinking I could. So I had to keep that in mind, and it was definitely challenging, but if I stayed respectful and just did the best that I could, I made it work.

[18:56] Jennifer Milner: Well, it's very scary for any teenager to speak up to a person in a position of authority and say, "I don't think that this is safe or right for me." It's hard for any child or youth to do. But add into it somebody in the artistic world — if you're a dancer or a gymnast or a skater, we're trained so unconditionally to obey our coaches and our teachers and listen to them and do what they're saying. And a lot of times I have to have conversations with parents and remind them that they're paying the people. You are submitting yourself to someone else's authority, but you are also the boss because you're spending that money. So if you're going to spend that money, you should submit to their authority — you can't just pick and choose what you're going to do and not do. But you also have to say, I can choose whether or not I'm going to submit myself to this authority.
[19:50] I've had dancers with EDS in classes where the teachers give crazy back-strengthening exercises — I'm sure you can picture some of them — and I've had to say, you can't do those. And she said, "Well, how do I not do them?" And I said, you just tell the teacher no. You do it respectfully. You don't do it in the middle of class right there at the time, but you walk up before class and say, "These exercises that you do, I've been advised not to do them. May I please sit out? I will work with my trainer to come up with alternatives that I can do while you do these," or something respectful. But to speak up to a teacher and say, "I don't want to do that" — that's a huge step for a lot of people to take.
[20:33] And as we're looking at advocating for yourself — Linda, what about parents who say, "There is something different about my child," right? "I have no idea what to do about it. I just know that they always seem to feel not good. They always seem to be on the verge of getting injured. They seem to tire more often." What would you suggest to them? What are their next steps? How can they get help?

[20:58] Dr. Linda Bluestein: Before I answer that question, I just want to piggyback on what Aidan said. Aidan, you're so wise. It's so amazing what you did, because I think the other thing is — as dancers and gymnasts and so many other performing artists, we don't use our voice. You had to find your voice and advocate for yourself in a way that a lot of us as adults don't even do. So you should really give yourself a pat on the back for being able to do that. That's really amazing.

[21:31] Aidan Leslie: Thank you.

[21:32] Dr. Linda Bluestein: Yeah, it's really, really amazing. And getting back to your question, Jen — I think it really depends on where the person is at, but for a lot of people, forming — I originally said "team," but I like Aidan's word "crew" better because I feel like that translates better into the performing arts world. So find your crew, and your crew should be headed up by your primary care doctor. If you're under 18, you probably have a pediatrician. If you're over 18, you might have an internal medicine or family medicine doctor. But that crew should be headed up by whoever your primary care physician is.
[22:19] And then the other people that I think are critical to have on your team — number one, somebody related to movement. That could be a physical therapist, a Pilates instructor, a gyrotonics instructor, an athletic trainer. It depends on what the needs are of that particular artist or athlete. Having somebody coaching you in how to move well is important because we want to make sure that we are using good movement patterns so we're not harming ourselves. Because one of the keys is to keep moving.
[22:53] And then the second thing is addressing modifiable risk factors. Things like nutrition are hugely, hugely important. So sometimes a nutritionist is absolutely one of the key people on your crew. Other modifiable risk factors would include things like sleep — good quality sleep is very, very important.
[23:13] And then the third person that you want to have on your crew — and I picture this kind of in a triangle because these things are all interrelated — would be related to the mind. So whatever you need to do in order to be as mentally healthy as possible, because the mind and the body are absolutely connected. What happens in the mind affects the body and vice versa. So we want to make sure that whether it's support groups or finding a community that helps meet your needs, a counselor, a psychiatrist, whatever it is that you need in order to be mentally healthy. And from there, you may or may not need specialists on your crew, but I think that's a good starting point.

[23:54] Jennifer Milner: That's great. And I love that image of the triangle as well — you're trying to hit all of the different ways that you need to take care of yourselves. Speaking of the mental health aspect of it, Kristin, I wanted to come back to you. We've talked in the past about how people with hypermobility have a higher incidence of anxiety, of OCD, of tendencies towards disordered eating. And when you add dancers into that, or any kind of artist, there's always going to be that higher risk. So as you are trying to work with dancers and you see them somewhere on the hypermobility spectrum, is that kind of in the back of your mind — let me look out for any warning signs for disordered eating? Or do you see it coming up more often? Is there advice you can give parents on what to look for as they are trying to move through this and figure out how to help their hypermobile artist?

[24:56] Kristin Koskinen: I always have the filter when I'm working with any artistic athlete — any athlete — that disordered eating may be playing a role. With dancers, absolutely. And for parents, it can be so challenging, because young people, especially adolescents — like we heard from Aidan, it was fine until it wasn't. And as you hit those adolescent years, that's when things move in. Also, psychosocially, as kids reach adolescence, they tend to start to explore their independence from their parents. And so when parents are reaching out to help, sometimes kids pull away. And that can be a very timely moment for parents to bring in other people for their kids to talk to and communicate with.
[25:54] When we look at it, it's this idea of a wheel, the crew — these are components that any dancer should have on board. Strength training and movement, PT, your primary care, nutrition. These are all things that every dancer should have. And as we normalize that in the regular dance world — we can look to the Royal Ballet School as the flagship of that — as a group, we can bring that together and say, this isn't just because you have a condition that makes you special. We really want to see this with all dancers. So if you're a dancer, we want you doing strength or cross-training, we want you seeing the dietitian, we've got counseling available — that's probably a good idea too. And bringing it all in.
[26:45] So that's an approach I like to take, because oftentimes it is the parent leading with concerns and coming to me, with a reticent kid in the background saying, "I don't need help, leave me alone." So sometimes that's a conversation I have just with the parent, and then we decide if the client is interested, or what's an entry point for that person. It may be about strength — is it strength? Oh, am I going to get bulky? Is the weight training going to make me fat? No, no, no. This is about strength. As Dr. Bluestein said, it's about strength and coordinating these efforts and bringing in building blocks.
[27:36] If it's about bloating and they're concerned that they eat and they've got these GI issues — food runs right through me, I get sick, I eat and I swell up, but it's not an allergy — we can address those if that's a primary concern. If they come and they're concerned about their weight, this may be an opportunity for us to talk about some of the other things. So we take what's available and work with that point of interest for the client.
[28:04] Sometimes the parents — and parents should always be involved in the care of their child — sometimes they may decide it's better to let the kid have one-on-one time so they can be authentic and get the help they need. And sometimes we say, you know, today it's time for a team meeting because we have to have this crew, and mom, dad, guardian are integral to the success of these things.

[28:31] Jennifer Milner: Yeah, I do see that independence that you're talking about. I know dancers will sometimes have discussions with me that they won't have with their parents, that they don't want to talk about with their parents. And it's finding that balance for me of creating a space where they can have those conversations without it being so isolating. The kids feel free to talk about it, and sometimes they'll float up test balloons in their conversations where I know there are bigger things that they want to talk about. And as far as my scope goes, I'll be very honest with them and say, you can tell me whatever you want to tell me, and I won't repeat it to your parents unless I think it's something that's going to harm you or someone else. So if you want to tell me how mad you are at your parents and how much you hate them for making you go to bed at 10 o'clock, I won't repeat that. But if you have harmful thoughts, then we are going to have to have that conversation.
[29:27] So when they float those test balloons, I know that it's time to have that conversation with the parents, and then the parents can find someone else to have a conversation with too. So it's really tricky at that age to find people that they want to talk to, when as a parent you're like, "Just tell me and I'll fix it for you," because that's what we've been doing our whole lives for those kids. And it's so important as a teenager to have that pit crew because they're not going to be your kids forever. It's important to teach them how to have their own pit crew and how to get out there and find their own specialists and give them the independence to be able to make those decisions for themselves.
[30:13] Aidan, I wanted to ask you — you no longer dance. So at what point did you decide to stop, and what was that transition like? What do you wish had been there for you that wasn't? Was there anything you wish you had done differently, or any kind of support you wish you had? How did you feel about that transition?

[30:33] Aidan Leslie: I stopped dancing when I was 18. About 6 months before that, I hit what I like to call the EDS wall — where I was doing fine, I had some symptoms, some joints that didn't want to stay in the socket, some pain. But when I hit that wall, everything went wrong immediately. I started having a constant headache, like a migraine-type headache. I started having more joint subluxing than normal. I started having GI issues. It just all started to swarm. And for a few months, I still tried to dance, though not nearly to the level that I had been.
[31:07] It was in January that I started getting sick, and I had summer program plans that I had to quietly leave behind. I had been planning to try and dance professionally, and I had to step back and go from dancing 25 hours a week or more to trying to do 1 to 2 classes a week just to see if I could handle it. I did about 6 months of trying to make that work. I remember going to very low level — I think I was 18 and I was in classes with 11-year-olds just trying to stay afloat and keep doing it. But I was so limited with my headache and what my body was feeling. I couldn't jump. I couldn't turn. I really couldn't do center. I could do port de bras — cambré, depending on your school, forward or backward — but I was so limited. I could pretty much do pliés and tendus. And I love pliés and tendus, but those also hurt my body.
[31:54] So I reached a point — I remember everyone was doing port de bras back and I was just standing there, and I thought, it's not worth it anymore for me. What I loved about it I could no longer do, and my body was screaming for me to stop. So I retired when I was 18. Immediately in the days after, my body had a couple of days where it just felt so much better. My hips weren't hurting as much, my knees weren't hurting as much, and I thought, why didn't I do this sooner? And then those few days passed and everything that had been hurting came back. I still had joints that were subluxing, I still had my headache, I still had my GI issues.
[32:36] I'm still very happy with where I left it. I think I gave it everything I had. I never for a second pulled my punches, and I did all the outside training, and I did everything I could, but my body couldn't do it. And I know it's a very personal choice based on everyone's individual body when they choose to stop.
[32:53] But for me, I was very lucky because I had the support I needed. I had fantastic parents who were willing to drive me to these ballet classes when I was so worried I was going to get in there and make myself feel worse — I would be crying on the way to class and I had parents who would drive me and calm me down. I had you, Jennifer, helping me feel as good as I could before I went in and keep managing myself outside. I had a nutritionist. I was still trying to get protein even though I was having GI issues. And I was working with Dr. Bluestein at that point as well, trying to see every way I could really get in. I was so lucky that I still had that support group even when I stopped dancing. It was there. Everyone was there for the whole transition, which was so good. Because even though I wasn't dancing, even though I wasn't going to class and doing those pliés and tendus, I had that support system to help manage my body and my mind and kind of my soul too through that transition.
[33:52] So I don't think I would have done anything differently in retrospect. I was very, very lucky. I think I stopped at the perfect time for me. And again, that's a very personal choice, but I'm very proud and grateful of where I left it.

[34:08] Jennifer Milner: Aidan, you're the textbook example of the best possible case scenario — making wise choices and doing everything that you can and really doing things well and having an incredible support team and being content knowing, "I've done everything right and I have gone as far as I can." You did mention something about how you stopped and then you felt great and then you didn't. And I was wondering, Linda, do you see that a lot — when people who are very active think, oh, I'm in so much pain, I'll stop and I'll feel better, and when they stop they actually realize they feel worse?

[34:44] Dr. Linda Bluestein: I do. And the other thing that I think is really challenging is that sometimes — we were talking about mast cell activation syndrome very briefly — whether it's related to that or things that are going on otherwise in the tissues, more musculoskeletal type things, like with a sunburn that we don't feel while we're on the beach, we often don't feel what's happening in our bodies until afterwards. So I think that can make it confusing sometimes. And the trick is finding where the right amount of activity is for that individual person, because these conditions — whether it's Ehlers-Danlos syndrome or hypermobility spectrum disorder — they're so heterogeneous. They're very, very different in each person. So what's right for one person is going to be very different than what's right for another person. So that's where, if you can, like Aidan did, get that crew and get things as individualized as possible, that really helps. Because what worked for someone else might work great for you, but Kristin often says it's an N of 1, which is so true. It's my body — no one else has the exact same body. We all have similarities, but we definitely have differences too. Learning to listen to your body in the right way is hugely beneficial.

[36:17] Jennifer Milner: Absolutely. And something that we just have to learn over time is how to listen to our bodies. And I haven't even learned that super well still sometimes.

[36:28] Aidan Leslie: It's a process.

[36:31] Jennifer Milner: It is a process. So Kristin, I know that you are a mom as well as an expert in nutrition. What does your mama heart say — or what does your mama heart wish that these bendy bodies would know — as you see them struggling with the issues that they have?

[36:47] Kristin Koskinen: Oh boy. Well, my mama heart reaches out to those parents too — to know that there are resources available who are going to help you take care of your child and help your child take care of themselves, which honestly is one of the most important things. And learning to listen to your body, know that there's help available and you are n equals 1.
[38:00] And how do you do it? It's hard, but there are things we can do and we can teach. Knowing that your child can learn how to take care of themselves — I'll speak to what I do, and it integrates everything. When I'm talking about food for your child, it's not just "you need these nutrients to be strong and do the things." It really goes far beyond that because, as we've been speaking about, there's this psychosocial component where kids want to be normal. They want to be like everybody else, or their version of what they think that looks like. They want to be able to do the things. So how do we address that? And that's going to be N of 1. It depends on your kid. Sometimes we need to weave things in — how, is there going to be a consequence for that? How can we make that work? What's really important?
[38:15] Something that came up with me at one point: one of my dancers was — we go through a lot of tissue in sessions, it's not uncommon, it's really emotional. When you talk about food and diet, it reaches through your whole life. And she was really upset because she just wanted to go to Starbucks with her friends and do normal things. So we talked through it, and to her that meant getting a certain drink. But when we talked through it, it was like, is it being with your friends? Well, that's the real thing. So we got that. And then we found some options that actually worked for her so she could go and participate fully, not just sit there with a bottled water.
[38:50] And that, for the parents, means a lot — because when you see your kiddo emotionally hurting, not just physically hurting, sometimes those emotional owies are the ones that we have a hard time healing, especially as your child is moving closer to adulthood. So giving them these tools to understand — and some of the tools are, this is your team now, it may be your crew forever or it may not, but at least you know that you also have a referral base. When you find someone who works for you, they may know someone else who can help you out.
[39:27] So for parents, when you're looking for people, I recommend finding someone who has an integrative approach, someone who does refer out and has a team who can help your child, someone who can spend the time and understand and treat your child as an individual. Sometimes we're going to have individual sessions, sometimes group sessions. And find someone who your child feels comfortable with — that's really important. If the child is the client, the child is the client, and they need to want to communicate with this person. If they don't, then find someone else. Let them be part of the interview process. Just because mom or dad likes the person, that can be a good start, but the client really needs to be comfortable with the provider, and then we can go from there, because we have to have a lot of really good communication.
[40:28] Even when someone tells me their limits, it's really important that they can say, "I'm not going to do that," or "This is what I'm willing to do," or "I have this other thing that is working against me." We need to have that level of openness and communication. And your dietitian is probably going to be about the same level of comfort that you should have with your therapist or counselor, because there is a lot of overlap. So include your kid in the process. Find someone who's going to be able to take care of the broad spectrum.

[40:57] Aidan Leslie: You made an excellent point there about the psychosocial. From the dancer perspective — we were talking earlier about having the courage to talk to your teachers, but there's also an innate level of courage required in having to do things separate from your peers. Even if you're breaking the rules, like I had to do quite a bit — you know, wear a leg warmer for your ankle injury, even if that's against dress code. Or I had to bring in water that had electrolytes in it, so it didn't really look like plain water. So that was breaking the rules. I had special permission where I could — the other dancers were held to stricter standards about what they could drink, but I had permission to drink water whenever I needed it. I remember I was doing Snow in Nutcracker and I nearly passed out in the exact same point every run through. So I had special permission to adapt a little bit.
[41:50] And that was terrifying at times when everybody else in the room was doing X, Y, and Z and I was the only one doing something differently. You had to sort of deal with that, and it was something I had to learn how to manage — because that was almost more terrifying than talking to the teacher. It's not just one person; it's the 32 other girls and boys around you, and you feel like they're all looking at you even though you know they're not. So I think that's so important to bring up.

[42:27] Jennifer Milner: That's true. And it's not even the official codified things like you need to wear a leg warmer. It's the things like when your friends say, "Hey, let's stay and practice our fouetté turns," and you know your leg is shot. Or when they say, "Hey, let's do 32 more enchaînés," and you're about to black out. Or when your friends are texting at 2 o'clock in the morning, "Let's just do 500 crunches right now so we'll look better," and you're like, I can't — and you shouldn't either.
[42:54] So even just the unwritten things — I remember when you were at PNB and you would be on a break, a lot of your friends would go and get a smoothie and you knew that you couldn't waste your precious energy walking up the hill to go get a smoothie. You would spend that break lying down with your legs up the wall, trying to give yourself that physical rest that you needed. And so you're losing out on that social time and that chance to connect with your peers and just be normal and not be the different person who's always making a big deal. So it takes strength and courage to learn to be that person. Again, kudos to you for as well as you did it.

[43:40] Dr. Linda Bluestein: And sometimes you get conflicting advice. I heard from a physician once who said to a patient, "You need to be a normal teenager," but at the same time, "Go to bed at the same time every night," and all these other restrictions. And it's like — wait a minute, those two don't overlap. Normal teenagers, if there is such a thing, don't go to bed at the same time every night. They eat a wider variety of foods perhaps, or whatever it might be. So sometimes you can get advice where you think, wait, what do I do with this? Because they just said two things that are really counterproductive or conflicting. So then you really have to speak up again and say, "Well, what do you mean?" And that can be hard.

[44:30] Jennifer Milner: Absolutely, it can. Does anyone have anything else they wanted to add? Is there anything that we did not cover today, Team Bendy Bodies?
[44:45] What I heard today from these wise mouths was that if you excel at something until you don't, and if it's all fine until it isn't, then it's okay to acknowledge that you might be different. It's okay to acknowledge that your child might be different and need that extra help. And that's the time to start forming your wheel or your triangle and put your pit crew together.
[45:11] And it really only takes one person. Find one good person — whether it's your pediatrician or a PT who understands and listens, or a ballet teacher who is really well-versed and can point you in the right direction. Find that one person and then they can connect you with someone, and they can connect you with someone, and then you'll have your whole pit crew together. It's definitely not something you have to do by yourself, and that's why we're here — Team Bendy Bodies — to help as well.
[45:41] You can always send us questions, and we would love to address those questions in another podcast. If people want to sit down and chat with us, we can do a Zoom town hall, or we can do a Bendy Bit if there's a specific topic you want to see covered. So please let us know what questions you have, and we would love to cover them for you.
[45:58] You have been listening to Bendy Bodies with the Hypermobility MD, and today we have been speaking with Team Bendy Bodies — we have Linda Bluestein, we have Aidan Leslie, we have Kristin Koskinen, and I am Jennifer Milner. We thank you so much for joining us today. Thank you everybody for coming on the podcast and for sharing your expertise with us, and we will see you guys another time.

[46:23] Dr. Linda Bluestein: Thank you. Thanks, Jen. 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, www.bendybodies.org, for more information.
[46:57] For a limited time, you could win an autographed copy of the popular textbook Disjointed: Navigating the Diagnosis and Management of Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders just by sharing what you love about the Bendy Bodies Podcast. On Instagram, tag us @bendy_bodies, and on Facebook at Bendy Bodies Podcast.
[47:13] The thoughts and opinions expressed on this podcast are solely 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.