The Dysunderstood Podcast

Season 2 Episode 6: Corri’s Story Transcript

 Welcome to the Dysunderstood podcast. I'm your host Ella Eastin.

Corri: It all started with just my diagnosis in 2022. Um, and then you approached me like that summer, um, asking if I could share my story. And I started my Instagram account after doing a bunch of research, um, on DYS anomia. 'cause I was just like so relieved to have a diagnosis finally. 'cause I've been having symptoms since probably elementary school.

So at the time of my diagnosis, I was 15, about to turn 16, um, and now I am 17, about to turn 18. So it's been a little bit, but I shared a lot about my. Experience growing up as a competitive dancer and having over 13 years of dance experience and how being diagnosed has changed that, and just how it is as an athlete in general to experience so many health changes as a young person and how that can really uproot everything.

But I've kind of made the best of that and, you know, it's shaped my, it's given me a new, um, appreciation for dance in general.

Yeah. Yeah. Well, it's so fun to see you and action on your account when you do have, you know, the energy or, you know, less of a symptom, symptom burden to, to be able to dance. But I think another thing that I've really appreciated is seeing the ways that you've allowed yourself to still move in a way that.

You know, that suits you in an in adaptive way too. Sometimes. It's like you have that urge to be on your feet and moving around and, and sometimes that looks a little bit different on any given day. Um, so talk about how making that transition has been and, you know, maybe the challenges that have come along with that.

Yeah. Um, a lot of it like started with my, just kind of discovering that like, certain types of dance were just no longer a healthy option for me. So like, I've dialed back the styles of dance that I'm like taking classes in. I still love to, if I have a lot of energy, I'll still like do some ballet or hip hop, like on my own, like maybe take a popup class.

But I've not, I'm not enrolled currently in any ballet classes because it's such a. Rigid form of dance and it's extremely structured, as I'm sure you're aware. Um, and being that it's completely 100% standing, there's like that absolutely limited my ballet experience. But to be honest, I've never been super attached to ballet.

I've just taken it as kind of like the math class of dance, um, to keep that structure and technique, um, and strength. But luckily, dance is becoming, at least at my studio, a little bit more flexible with kind of incorporating contemporary ideas into ballet. So we do. Some, um, like floor bar, which is really cool and adaptive.

Um, and I do that on my own outside of dance 'cause I don't take, uh, ballet classes anymore. And then just like little stuff like that. I love working with floor work now. Um, especially in contemporary, lots of like rolling over my shoulders, like tricks that I literally don't have to get even further than my knees for.

Um, I'm actually working on a project, uh, just choreographing a piece where I don't stand up at all. So I'm excited to share that with you guys soon. Um, but yeah, it's just like little adaptations like that. And even, um, I've watched, I found this other person on social media who. Has, I think EDS pots and a few other conditions.

Um, her name is Kaylee and she is a dancer in, um, who uses a wheelchair. And she's like really showed me that like, there are no limits to what you can do in dance classes. And she now like, works professionally. She's been on Broadway with her wheelchair. Um, yeah, so it's, it's fun to be able to talk to my students too 'cause I assist in sometimes sub dance classes.

So it's good to be able to share with younger dancers that dance is literally for everybody. Yeah,

I think it's really cool that you're also able to be extra creative. 'cause if, you know, these are. Correct me if I'm wrong, not things that you're taught kind of from day one of being in the dance world. Um, there's an expectation of being up and down and, and on your feet and all these things.

So it allows, you know, another level of, um, creativity that's required. Um, and something also that people haven't really seen that much of, like you said, um, Kaylee, who you mentioned, who's on Broadway in a wheelchair. And I don't really think we see a lot of that. Um, and I do think that the landscape is changing in that way, but I really appreciate that there is more representation, um, of people that are, that have different abilities kind of in these spaces.

Um, 'cause it's also so fun to see, you know, what people can do. Um. With, you know, the things that they do have and, and watching people do what they love, I think is also just generally inspiring. But, um, thank you for, you know, teaching the younger ones too, that this is something that is accepted but also can be very empowering.

Yeah. Talk a little bit about your experience, I guess, in this space. Having to go from, I, I mean, you said you've been having symptoms since you were young, but, um, you know, things got a little bit more challenging as you got closer to your, to your diagnosis. Um, how was working with the coaches and the people kind of in your studio and in your classes?

Yeah, so obviously there was a little bit of like. I don't know. I was going through like an angry period of like, you know, middle school. 'cause I was experiencing all of this when I was, you know, going through those years. And, um, I specifically remember having some run-ins with my ballet teacher that I had during those years.

And, um, there was just so much like anger towards her, but also towards my body because I was experiencing things that just I couldn't understand. And neither could she, and it's not necessarily her fault, but it does come from a place of just ignorance. Um, which, you know, of course it, I'm not trying to play like a blame game or whatever and be like, she's a terrible person.

She's a sweet person. But it's just like. There's, there was definitely a level of empathy lacking. Um, I would be, you know, super tired, leaning over the bar, yawning a lot, and she would just like, kind of try to whip me into shape and I'm like, I'm expressing to you that I'm feeling certain symptoms that are actually prohibiting me from being able to dance the way that you want me to.

And there was just like no level of understanding. And I remember one specific time I was actually kicked out of class and that, like, I just remember like crying in the bathroom at the studio and I was like, extremely frustrated. Uh, frustrated because I was trying to explain to her that, um, I just couldn't stand up like at the bar and I didn't know why.

Um, yeah. So there was little run-ins like that, um, before my diagnosis that just kind of filled me with. Kind of angst and, um, yeah, I've really took, taken some time to like, reflect on that and I'm not like angry at her anymore. I have a lot of respect for her. She is a really, really sweet person. But, um, yeah, it's just learning how to, um, be confident in your ability to advocate for yourself and people don't have to understand what's going on.

Like, a lot of my passion and things that make me like, you know, you can get really fiery about tub subjects that you're super, like, passionate about. Yeah. And if I start to like notice myself getting frustrated, I like take a step back and I'm like. It's not their fault that they don't know. Um, and it's not my job to educate them.

Of course, I have a passion for spreading awareness, but if someone's completely, you know, unable to open their ears and mind, then it's not my problem. Yeah,

I, that's such a wise perspective. Uh, you have been managing this for a long time, so I know that you have also grown, um, even since you've shared your story first with us.

Um, but I think that sometimes we feel like, okay, there's only so many of us that are willing to speak up about it. And so sometimes you're like, I have to be the person to do that. Um, I feel a sense of responsibility all the time, um, but sometimes I don't have the energy to fight that battle. Um.

Sometimes I just can't die on that hill. Yeah. Um, and so it's, I'm, I'm glad you're kind of protecting yourself in that way and that, you know, not every single opportunity that you have to teach someone is a requirement on your end. Right. And that's sometimes hard to swallow too. 'cause we, we do want to, you know, ensure that we're spreading awareness, like you said, as much as we possibly can.

Um, but also have to do it in a way that's sustainable for all of us.

Right.

Yeah. So, um, so for those listeners that kind of have no background, um, what are the things that revealed themselves maybe at an early age that you maybe can look back now and be like, oh, that was like my pots.

Yeah. Um, I remember.

Getting diagnosed and just in the appointment with my doctor, who also, um, happens to have pots, which was kind of an incredible coincidence. Um, I was with my mom and I just remember breaking down and crying because I was thinking about all the times that little me was in like, uh, conditioning classes or ballet classes at dance, and super frustrated that I couldn't remember combinations.

Like especially with bar, like, there's so many like acute foot movements that were just like so specific and taught like this and you have to just get it. And I was like. I never truly understood what like that was until I heard about like brain fog and everything and how dysautonomia can affect your cognitive function.

And um, yeah. So I just started crying about that and then I was talking to my mom and I was like, I'm not lazy. I remember telling her I'm not lazy. I've been feeling like I'm lazy my entire life, but at the same time I have given 200% of myself to get 50% in the pers perception of other people in the dance world.

Um, so yeah, I've, the word lazy has come up a lot and I've learned to like dismiss that word 'cause I'm doing absolutely everything that I need to be doing and there's no other person I should be comparing myself to. It's all growth within myself, so,

yeah. It's especially hard when you don't have kind of an explanation for things, but I, I'm sure that it's, it's even hard now too.

Um, when we're growing up, we're in spaces with other people that are our age and, and everyone develops and changes at a different rate, um, even if they aren't managing any sort of like health issue. Um, and the comparison game can last for the rest of your life. Um, and it's something that I still have to constantly work on.

Um, and I have always just been so impressed with your kind of perspective. Um, I don't think at at that age I would've been able to come to these conclusions. Um, but it's really great to, to have you in the community and, and representing some of the younger patients that are going through this and. It's really a challenging time in life regardless.

Um, you know, as you mentioned, like the middle school angst Yeah. Uh, is real. And, you know, that's, that's challenging as it is. Um, and something that we haven't spoke about that I would really love to hear about is kind of your parents or your loved ones and their role in kind of your journey and like to your diagnosis and then helping you afterwards.

Um, because with, with young adults that are diagnosed and, and managing this, their parents or their family or whoever supports them is partially in, you know, the passenger, sometimes the driver's seat with, with these things.

Yeah. Um, so it all really started with my mom. Um, so we. I've been experiencing a ton of like fatigue and just all of like symptoms that kind of, for me they peak during the winter.

Could have a lot to do with seasonal depression. Um, I also moved when I was 11 to a place with a much colder climate, so that definitely affects me. Um, yeah, so my energy levels were super low. I was dizzy a lot. Um, all the symptoms and it was winter of 2021, about to be 2022 when I had to miss over a week of school, I think, which is like a lot for me 'cause I was a kid with perfect attendance up until that time.

Um, and that prompted my mom to kind of force me to just to finally get an appointment and like talk through those symptoms with the doctor. And that was when we got diagnosed. Um, and through that whole process, my mom was just like. Super apologetic to me. I mean, we've been through a lot together as every parent and child has have.

But, um, she just felt like bad for, I guess not noticing, I guess that's kind of a mom thing. Every mom wants to be super on top of anything that's going on with their kid, but if they can't see it or aren't exposed to information about, you know, what those symptoms could possibly be, um, they can go unnoticed.

So yeah, she, she started crying too in the appointment. Whe where I got diagnosed and I felt so bad. I was like, mom, like you couldn't have known. It's not your fault. Um, yeah. So then when we got home and talked to my dad about it, he was in super like research mode. Like he starts like googling everything.

He's on like the Mayo Clinic's website and looking at like. Possible like cardiologist to go talk to and stuff like that. So he was just like super dad superhero mode immediately. Um, yeah. And then like my sister, she, when I brought it up to her, she was like, oh, that explains so much. And it was like, yeah, I know.

Um, obviously like every sibling, we've had a lot of, you know, competitiveness, especially with like the dance world, 'cause we're both dancers and have like mirrored each other as if we were twins our entire life. So just like I went through a ton of, uh, I guess I'd say like anger with that competitiveness when I was experiencing the symptoms for the first few, like, months, years, where I was like.

How come she gets, like to be able to participate in every style of dance and not feel absolutely destroyed after, why does her body not punish her after, you know, a rehearsal, stuff like that. Um, when I want it so bad, like when that's literally all I want to do. And I talked to her about it and I was like, I have felt like your shadow in the dance community for so long because we're like two forms of the same person, but you're experiencing everything that I want to do.

Um, yeah. So we talked about that and she was very, um, I, I'm sure it was super eyeopening to her too, um, to hear about. Like how resilient. I remember that was a big word that she used. Um, she was always talking about like, uh, conditioning classes and ballet classes where she could remember me having to like sit down for a few minutes or, you know, times that I just looked like absolutely defeated, but I kept going, um, and pushed myself myself through it.

Yeah. So there was a lot of just like, wow. You know, there was a lot of like shock and like on both parts, myself and hers, where I was like, I didn't realize how most people don't have to push that hard. Um, yeah, it was just really surprising that. I was exerting so much more energy than everybody else. I thought it was normal, um, my whole life.

So,

yeah. Yeah. I'm sure your, like conversations with her were also like one beneficial for her to have a better understanding and you kind of understanding each other, but, um, also a good reflective experience for you. And do you feel like those reflection periods after your diagnosis have helped you be better about giving yourself some grace and, um, like retroactively and, you know, for the future?

Yeah, absolutely. Um,

I definitely have forgiven myself for so much after being diagnosed. Like I. Used to be like so hard on myself with constructive criticism from anybody, whether it be in the dance world, art community, 'cause I do art as well. Um, yeah, just like any comments from teachers, I'd be like, in my brain I'd be like, so like, tense about it.

I'd be like, I am trying so hard right now. Um, but at the end of the day I've learned to like just release that, um, as just their job. Like it's genuinely, it's, they're required to give feedback and a lot of it is subjective and you just, you don't have to listen to it if you disagree. A lot of that has, um, really come up in especially visual arts, but dance as well.

Um, when it comes to like choreography and improv, it is up to you. You have creative license and. You know, it's, you can choose to follow what you wanna do, even if your teachers disagree or have an a different opinion. Um, yeah, I think that's all I have to say about that.

Yeah. I, yeah. As I'm listening to you speak, I think, um, something just came to mind that I, I think like could actually be helpful for this population and, and that pursuing things in life that are more subjective, um, might actually be a really effective, uh, healing tool, um, in the sense that like your art and your dance is, you know, absolutely beautiful and you get to create it the way that works for you, but also the way that fills your cup.

Um, but stills allow still allows you to have that outlet where you feel like you're doing what you love. Um, and I think it's hard, you know, whether your hobbies or interests or extracurriculars are of the subjective or of the objective kind. Um, but when you put more of your energy into this objective, I think it's great that you mentioned like you have the ability to take that criticism or that advice and use it moving forward or just use it as more data to confirm that you don't wanna do that.

Right? Yeah. Based on the way it makes you feel. Um, so I think that encouraging people to spend their energy doing things that. You know, that suits them in a way that makes them happy. Um, but isn't up for objective judgment might be actually a really powerful tool.

Yeah, absolutely. Um, I remember one of the first things that I heard completely unrelated to anything in the chronic illness like sphere, but um, it was talking about dance and how it's become such a competitive and rigid structured part of society.

And I was thinking about it and I was like, you know, back to the caveman days, like people have always been dancing, but it's just been a thing to release stress and to have fun to express themselves. People have been dancing since the beginning of time, like babies come out of the womb and the first thing they do is not walk, they dance.

And I thought about that and I was like, dancing is literally for everybody and you, there's no definition for it. Um. It's important as people that we go back to our roots and just start dancing because that's what feels right, not as opposed to, you know, doing choreography and trying to be perfect because that can have so many negative effects on your body and your mind as well.

Um, yeah, again, with incorporating contemporary ballet into my ballet, like curriculum has really, like, I used to hate ballet, like, I'm not gonna lie, it was the worst part of my week having to go to multiple ballet classes in a row. But now I like. I can really, really appreciate it as an art form because I've been really delving into the world of like modern ballet and contemporary ballet, which is focusing on your own anatomy and physiology and what feels good as opposed to looks good.

Um, yeah,

which is also up for interpretation, right?

Yeah, exactly.

And also it's what we've seen before and I think that this movement of expanding the idea of what's right and what's beautiful, um, is only gonna change that over time. And, you know, the people leading the dance world that have seen that rigid structured, um, style for so long.

Will slowly phase out just as the nature of all things. Um, every part of society changes with time and so it's pretty exciting, I think, that you're kind of at the forefront of, of seeing that change, um, and be able to experience over the course of your lifetime, like what that, um, like how adaptive and like other art forms are gonna become more one accepted, but also just more generally appreciated.

Um, so that's really exciting.

Yeah, I've, um, been, I got super lucky with the company that I'm with, um, Barnum Dance Company in Richmond, Virginia. Um, the director, um, is really more of like a mom to me, and she is been there through the entire process of my diagnosis. She met me when we first moved here, um, from Phoenix, Arizona.

And, um, she's seen me like grow as a dancer. I used to be focused just on hip hop, like that was my thing. And then I went through, you know, started experiencing my symptoms and contemporary and modern became my, you know, focus. And she's been super, super accommodating. And in the past year. Um, I had a trio with like, in the competitive, um, circuit, I guess with two of my best friends where we were each representing, um, different social causes.

So, um, and I love our studio because it's super, super diverse. Um, race, gender, everything. Um, and our director is not afraid to preach that and make it a part of her business's identity. And I'm super proud of that because a lot of people try to stay off the touchy subjects to try to gain more, you know, wider varieties of customers.

But I think it's so, so valuable to preach diversity. So our trio mentioned a lot of things, um, focusing on gender identity, um, feminism, black Lives Matter, lots of important subjects, and, um. We each were representing a different subject. But I liked that in the beginning it was, so it's a spoken word piece.

Um, and each, it had like three different sections 'cause there were three different dancers. Um, my section was touching on L-G-B-T-Q issues, um, gender identity, stuff like that. Um, my friend Betsy was representing women's rights and Angie was, uh, working on like racial equality, black Lives Matter. And it was such a beautiful, um, representation.

Representation of all people. But I especially appreciated how in my section of the choreography, a lot of it focused on groundwork. And I wasn't doing a lot of like crazy like tricks or anything. It was all based on like simple movements of the body, but it was so captivating that we did super well at every competition.

And um, yeah, the spoken word even mentioned. Um, you know, ability as one of the, um, different diversities of humans, um, which has become like such a passion of mine because I've thought about it. And, um, whenever people bring up, like those things that set us apart that we need to work on, you know, accepting and becoming a daily part of life that we don't question people for who they are anymore.

Ability has never been super prominent in that list. You know, I've always heard about like women's rights issues, uh, racial issues, immigrants issues, everything like that. But I love hearing people discuss physical ability and mental ability as well. Um, because. It's such an underrepresented group of people and especially in the dance world.

I've actually met a few, uh, other dancers who have pots uh, in the past few years have been diagnosed. And I'm super grateful that even in the past, like three years since COVID, we've had such a rise of research on dysautonomia in general, um, because a lot of people are getting it from long COVID and stuff like that.

So yeah, I've met some other dancers that have been going through similar things and are just like recently getting diagnosed and it's great to be able to like, talk to them and kind of be a big sister in that world of experiencing those symptoms.

Yeah, I think relying on the people that have some shared experiences outside of our illness, I think is.

Um, really powerful 'cause it gives you also other things to relate on and not just kind of your symptoms, which, right. I mean, I've connected with dozens, if not more than a hundred people now through this community because of our shared experience with our illness. Um, but being able to talk about how that does affect the thing that kind of means the most to you right.

Um, is I'm sure really, really beneficial for, um, your healing and theirs. And, um, you know, collectively, you also are, are more powerful in being able to spread the message and. You're not representing just yourself. And when you have a group of people, it's I think, a little bit easier to, to be able to say like, I'm not the only one that's advocating for this.

I'm not the only one that's like experiencing this. Um, so I look forward to seeing, you know, how that evolves and, and maybe you guys will, um, work on a project together even virtually or something.

Yeah, absolutely. Um, that brought up like a really important point about like identity. I've heard a lot of people talking about like making those parts of you like your entire identity.

I've heard a lot about like, since I got diagnosed, it's all I can talk about. And I'm proud of that at this point. Like I've heard a lot of like. Why do you make everything about pots? Why do you make everything about your illness and stuff like that? And I'm like, in my world, I don't get a break. So when you're around me and I'm experiencing those symptoms, I'm not gonna hide them.

I'm not gonna pretend that I'm not experiencing them. Um, because it is 100% of my life, 100% of my life is affected by it. Um, if you're tired of hearing about it, that's not my problem. I am tired of experiencing it. So yeah, I'm very much okay with it. With pots being my identity, I am dancing with dys anno.

That's the biggest part of me. And yeah, I don't have any issues with admitting that. Um, there's absolutely nothing wrong with being passionate about what you're going through. And I've heard the same thing with any other marginalized community, like, why do you make being gay your entire personality? And I'm like, because we go through so much, like I'm not gonna be quiet to make you more comfortable.

Yeah.

You know?

Yeah. And, you know, living your life that way from a young age to, I think is important to also show that, you know, this isn't something you have to be quiet about. And later in life, get angry about it. It's like, I can be proactive about this now. Right. The people around me, um, that wanna stay around, accept and love this part about me.

Um, so I truly appreciate that you, you know, live out your life that way.

Right. Yeah. And bringing up that point about like relationships and friendships and everything like. There has been since my diagnosis, so much change in, you know, the sphere of people that I'm surrounded by, as I'm sure everybody with chronic illness can relate to.

At some points it's even been like, I consider myself to have no, like close friends or, you know, that type of group community. Um, in school especially like I'm best friends with the nurse and I am not afraid to admit that Casey, you are my girl, I love you. Um, but yeah, just things like that. Um, I've learned that there's really no reason to clinging to relationships that are not serving you anymore.

Um, if you're not benefiting from a relationship, especially if you feel like a burden. That is one of the biggest things, like, I hate going through, you know, I, I just remember like memories of me being with certain. No longer friends where um, they would just make me feel bad for needing to, you know, get extra like water or sit down if we're at like some event.

Just stuff like that. And I'm like, I lose absolutely no value in letting go of that friendship. And a lot of people, I mean, it's painful, but a lot of people need to come to that realization that it's really not bare minimum to accommodate your friends.

No. It's like rooted in the love that you have for them.

You don't even view it as a favor. It's, that's part of who they are and I'm gonna sit with them through this. Um, and you know, you, you brought it up without me even asking. Um, but that's something that I do like to talk about with people is how. The landscape of their friendships and even family relationships have changed.

Um, yeah, you know, sometimes it puts a strain on family relationships, um, you know, for a variety of reasons. But everyone's human and like you mentioned, like your mom was going through with you when you got that diagnosis, and you know, parents don't wanna see their children unhealthy and not happy, and so it's painful for everybody involved.

Um, so tell me about maybe over time how things have changed, um, or if there have been any periods where it's been kind of like particularly challenging, um, within, you know, that group of people in your life.

Yeah. Um, I'd say the most like challenging aspect of my diagnosis with how, how, how it pertains to, um, relationships was just like the high school experience, um, which I'm sure is very relatable.

Um, I was with a certain friend group that just didn't have an ounce of effort to, um, you know, go out of their way to research or learn anything else about my condition or similar conditions in general. And it is such a big part of me that I was just like, I don't need this. And I. Distanced myself a lot.

I was focusing on, you know, starting my Instagram account at that time, reaching out to some people that have similar illnesses. Um, doing a lot of improv work on, you know, making videos of that and just improv on its own. Um, trying to maintain my own physical health with, um, I was experiencing a lot of like, just sadness about losing like muscle mass.

Like, oh, I'm not the dancer I was anymore. Stuff like that. So I was really focusing on like. Getting into a good routine that was helpful and accommodating for me. So I've been doing Pilates consistently at home. Um, instead of taking like dance classes, because Pilates can be super, like floor based. You don't have to get up, you don't have to do anything like that.

And similar with yoga, um, yeah, they've just been really good for me. So I was focusing on that aspect of my health and it bled into my mental health too, and was able to keep me just self-focused. And I, during that period, I really learned that it's absolutely better to be alone in situations like that, um, than be surrounded by people that are just not adding any value to that experience.

Um. And also I just like, it might, it might be, uh, because I'm an introvert, um, I just really, really appreciate alone time and there's something really, really valuable in being comfortable with being alone.

I just can't get over how wise you are. Um, yeah. I think especially these days, we're constantly stimulated by technology and there's not a minute that goes by that people like will sit and just like, sit on a park bench and like wait for someone to show up without sitting on their phone and looking at it.

Mm-hmm. Um, and when you're dancing by yourself or doing Pilates by yourself or yoga or whatever it may be, you may have some instruction happening or whatever, but you're also with your thoughts and Exactly. Being able to be Okay. Acknowledging your thoughts and maybe addressing those thoughts, but maybe also just observing them and letting them go by.

Yeah. Um, without letting them kind of affect you, I think is a really important skill. Um, and I didn't really know that that was something that I needed until I stopped swimming. Um, you know, I would spend more than two, three hours, maybe sometimes four hours a day underwater with no stimulation except what was happening in my own mind.

Mm-hmm. Um, and it's something I don't get anymore. And I would consider myself like an extroverted person. Um, but I've never needed so much alone time because yeah. I'm not getting that solitude in silence anymore. Um. And, you know, having to make that time for yourself is sometimes challenging given, you know, you're taking care of yourself and having a chronic illness feels like a full-time job oftentimes.

Um, but I think that you being able to, to do that and be at peace with that and appreciate it, is a really, really good skill that is going to serve you for a long time.

Mm-hmm.

Yeah. So I'd love to hear kind of what you are working on and, um, some of the art outside of your dance and mm-hmm. How that has benefited you or, um, you know, how it's added to your life.

Yeah. So right now I've, well, since we last met, I have not been. Competing with dance. Um, I've just been taking recreational classes, which is was a very weird decision to make because it's been so much of my identity. And having to be surrounded by all the people that are still on the team is like very isolating, but at the same time it's like I don't need to be performing.

A lot of it was like, I don't need to, um, show off. Like I love competing because I love seeing all this other, all these other forms of dance and you know, really exposing myself to the dance world. But at the same time it can be so like, I don't know, just isolating. 'cause it feels like you are constantly expected to be innovating and changing the dance world and stuff like that and just be set apart from everybody else that I was like, okay, I can take dance classes and still.

And not miss being on stage, being judged by a group of people that I don't know if I would even take their restaurant recommendations, like stuff like that. Like why do I take their dance criticism so to heart when I wouldn't trust their opinions on something? So, you know, unimportant. So yeah, with art, like visual arts, um, I've been focusing a lot on just kind of like trusting my creative license.

Um, I've been taking art classes in school since middle school, um, and I've always had art being a part of my life. But recently I've been very much exploring. Just not like listening to other people's opinions. Like that's really all it comes down to. Um, I started an Instagram account for my art as well, so I've been selling art, um, a little bit.

I started that this summer, um, which has been pretty helpful because it's kind of like teaching me that I can find the value in my own talent and you know, I'm sure a lot of people that are artists or even just like own small businesses have struggled with like, pricing their stuff. 'cause they're like, I don't know how valuable this is, but I think about it and I'm like, the people that I'm selling this to are buying it because they can't do it themselves or don't have the experience that I do.

So I'm like. There is a lot of value in that. I've been working with acrylic paint and collaging, especially collage is probably my favorite medium. 'cause you can in, you know, incorporate so much other art into your own art. Um, so I've been using a lot of like, dance focused, um, photography into my collages and anatomy as well.

Um, so I've been in the process of applying to colleges and everything. Uh, my main choice right now is Arizona State. I wanna go back to Arizona, or at least the West Coast in general. Um, 'cause it's just, it's better for my body. I like the environment a lot more. And I also just wanna push myself out of my comfort zone and be able to be on my own.

Um, because there really is nothing that's limiting me from doing that other than my brain. And I know that if I. I chose to go to school on the East coast where I am right now, where all my family is. I would probably resent that decision. Um, because I've been wanting to go to Arizona State since I was like five.

That's just always been my dream. So I wanna pursue a kinesiology degree, possibly on the track, uh, towards physical therapy because, um, you know, I had never really noticed how passionate I was about anatomy and physiology until I got diagnosed. And then I was like, the human body is so amazing. Like, I love medicine as a general subject.

And, um, you know, having personal experience as a patient with chronic illness is so valuable. Um, my doctor really inspired me that you can be a medical professional with a chronic illness and it adds so much value. Um, so yeah, just coming into that sphere from the experience of a patient and then as a dancer too, dancers are always in physical therapy.

Um, so yeah, I wanna like specialize in people with dysautonomia and athletes of any kind. Yeah.

That's amazing. First, I'm so excited for you and you would make an amazing provider with your experiences and your perspective and, um, openness and flexibility and creativity. I think creativity is something that isn't necessarily fostered in that world quite enough.

Mm-hmm. Um, but when you're working with people with, you know, certain limitations, like being creative and creating an adaptive way for them. To do physical therapy and other things is so important. Um mm-hmm. So I have no doubt in my mind that you would be able to accomplish that beautifully. Um, thank you.

Have you done physical therapy that has benefited your symptoms or have you mostly done it for injuries? What has that looked like?

So personally, I haven't had a ton of experience being a physical therapy patient. My entire family has for some reason, like my dad's had shoulder issues. He was in a, uh, an, um, Vespa accident a few years ago.

So he's been super active in that world. And then my sister too, being a dancer who was uh, on point as well. Obviously that comes with so many, um. You know, acute issues in the legs especially. And then my mom has also been in physical therapy. She underwent some surgeries a few years ago. Um, yeah, so it's just, I've been surrounded by that atmosphere.

Um, I personally haven't had to be consistently in physical therapy. Um, 'cause I didn't have any like, major injuries that have spanned over a long period of time. Most of mine were like super, super acute and then they just go away, like overuse issues, stuff like that. Um, but yeah, I've just been super like researching like counter maneuvers and stuff like that, that a lot of people with dysautonomia have just naturally discovered that this like, helps them get through the day.

Like a lot of, um, you know, calf raises in the grocery store, stuff like that. Um, laying on your back, doing bicycles, stuff like that, that has really just like. It's really incredible how people with this auto have all just like discovered those things on their own before they even knew that that was like medically proven to be, to help their symptoms.

Um, yeah, just things like that. I wanna research into more ways that people can help themselves get through their days.

Yeah, I think a great idea, maybe you can start a business, is having like a post pots diagnosis, like physical therapy where mm-hmm. Even just taking the time to talk through what does this mean on a day-to-day basis for your body.

And some people will have more knowledge than others. Um, some people will have like. Longer years of experience living with this and they just haven't been able to put a name to it. But being able to have someone that you can go to and they can explain the physiology behind what's happening and have someone be a resource for them.

It's like, oh, this is the symptom that tends to bother me the most after I do this. Like, is there something else that I can be doing? You know, just the problem solving and you know, the physicians that are working in this space that have this patient population in their best interests, like is doing, they're doing everything they can.

Yeah. Um, but they still are limited in terms of how much time they're able to spend with their patients and all the things that make navigating our healthcare system super challenging. Um, so we need more people working in this space with these patients. Doing different things. Um mm-hmm. Yeah. So hopefully in like eight years that'll be you.

Literally. Yes. I, um, especially with pt, it's just really interesting how, um, you know, you can focus on issues that are more like vascular in nature as opposed to like muscle um, injuries and stuff like that. I've seen like a lot of, um, you know, everybody's been to PT for like a ligament issue or you know, joint problems, stuff like that.

But learning that you can incorporate more internal issues into PT was like super interesting. Um, and I also just don't think there's been a lot of that happening, people that specialize specifically in Dyson anomia. So, you know, I wanna kind of. Jumpstart that and start bringing that more into conversations about healthcare.

And also just like you were saying, like doctors and nurses, everyone who's a primary care physician for people, like they are so busy, like they have a lot on their plate as everybody in the healthcare system does. And having external, um, providers able to support you through that. Um. You know, specializing in specific issues like that can really, really help.

Um, 'cause as you said, like every doctor is booked solid and has like very, very limited time with patients. So if they have another source of good advice for that, where they can really, really focus on the patient's individual needs, that's very valuable to that.

Yeah. And if a physician knew like, oh, this is a provider that I trust that I could send patients to, that can have more regular feedback and make, you know, changes on a more regular basis to experiment with things that they can try, would be super valuable and, and make the patient feel a little bit more supported and heard.

Um, so that's, you know, hopefully not just a pipe dream between the two of us, but something that we're gonna be seeing expanded here over the next couple of years. Yeah. So are there. Things that you wish you would've known before you got your diagnosis or even right when you got your diagnosis that you know now and you find super beneficial?

Yeah. Um, I think one of the like, main things that's really, really stuck with me, which I also mentioned in the first story that I did with you guys was my doctor's advice to not push yourself, which was crazy to hear as an overachiever. I was like, what are you talking about? Like, if I'm strong enough, I can get through this, which is true physically, but then I'm paying for that for the next like week or several weeks with flareups and everything.

So it's just. I don't know. Trying to, I feel like myself and so many other people in the community, especially athletes, have struggled with that sense of wanting to overachieve and constantly push yourself. Not even for, not even to please other people, but like mainly for your own like happiness. I don't know, it just, there's that sense of accomplishment when you get through something that you're like, there's absolutely no way I can do this.

So, I don't know. I've really learned to appreciate. Laying in bed, watching tv, just like stupid little stuff that we take for granted reading books. I've had time to actually sit and like, get through books and I used to hate reading and now it's like one of my favorite things. Um, yeah, just like little things, little joys that humans aren't appreciating anymore.

Um, and like you were talking about with like phones, you know, constantly being connected to everything can be super, super exhausting. And, um, yeah, I think being diagnosed has really like, helped me to be able to connect with other people regardless of if they have health issues or anything. Because like in public I'll notice I've been a lot more extroverted.

I've been able to talk to people a lot more, um, just like. I'll see a cute, like old couple at a restaurant or something and it just brings me so much joy. Like little stuff like that. Like I'm like really, really learning to stop and like appreciate that. And then also just like pacing yourself and learning to operate on a completely different schedule than the world wants you to be on is really, really valuable.

Um, yeah, like I've noticed a ton of just like pressure from hustle culture or whatever you'd like to call it. It's just so like anxiety driving and it's been. Kind of like a daily reminder thing. Like it's not like something that I'm completely over that, um, sense of like, you need to be doing more.

There's always that anxiety of like, I need to be doing something right now. Whenever you take a moment to yourself or an hour or a day to yourself, you start to feel like guilty and like you should be being productive. But, um, you know, it, I've had to learn that rest is just as productive as anything else that I could be doing.

There's no other place that I have to be. Um, and there's always gonna be time to do whatever I need to get done, like on my own time. Yeah. So I've really learned to appreciate that. This summer I've gotten into hiking as well, which is something that I've always like, wanted to do, but just haven't had the motivation to get out and like actually accomplish it.

But like. I don't know what it is, but hiking with Jos does know me. I thought it would be such a like, difficult experience 'cause it's just walking like you're upright the entire time. Like I thought it was gonna be exhausting and I was gonna feel awful, but I spent like a week and a half this summer in Tennessee, which was so beautiful.

Um, and just hiking was like such a relieving experience too. 'cause where I happened to be, um, like the nature was just so, so amazing. And I think. A lot of it had to do with the fact that when you're on an incline, your ankles are, you know, they're at that angle too, so the blood vessels are able to constrict and that it's not as draining as walking on a flat surface.

So, um, you know, that feels incredible. It's a good stretch for your Achilles too. And then at the end of the hike, it was super rewarding. We got to this beautiful waterfall with like freezing cold water, which was really, really refreshing and relaxing. And then I was just expecting that like the next day I'd be in bed, like paying for how much energy I exerted.

But the next day I was the most relaxed I had been all summer. And I just love that I am like able to find those ways to incorporate in nature into my life. Um, 'cause I feel like we all just get so caught up in. Emails and community stuff online and it's so overwhelming.

Yeah. Yeah. Learning over time, even with it changing kind of what, um, is the best way for you to like mentally unplug, um, is really important.

And do you, do you feel like you would've been able to manage the hiking at the beginning of your diagnosis or do you feel like it's been actually like good timing that you have had some practice experimenting with, like what helps you and then kind of being able to add things in?

Yeah. Um, I think for sure I don't regret how my experience has been, um, because, you know, if I didn't go through the exact progression of how I dealt with it.

Then I would never like be where I am right now. There's like a lot of like, if I could go back and change this, um, whatever. But I try so hard not to think like that. 'cause that's just not an option and whatever's meant to be will be. Um, so yeah, no, I'm, I'm super grateful for how I went through this experience and I don't know, it's just I've learned that if I don't start having this like healthy mindset now, it's never gonna happen.

And I need to just accept the fact that this is my life. It's part of it, and it most likely will always be part of it, and that's okay. Um, and other people are going through the same thing. So yeah, I'm super, honestly, this is probably the weirdest. Thing that I could say about all of this, but I am super grateful to have dys anno.

Like genuinely, I wouldn't have found my passion through dance. Like I was gen, I was losing a lot of that, um, drive to just participate in the dance world. Um, I didn't wanna go to classes. Like, I was just not feeling it. Like there was no reason I was there. Um, my friend Angie, her favorite thing to ask people, like, she always goes around to people at dance competitions and asks them, why do you dance?

And I've always thought about that. I'm like, before I was diagnosed, I genuinely, I was like, I don't know. I've been in classes since I was three. But I know I like dancing, but I don't know why. Like, if I had to explain it to somebody, I, I can come up with absolutely nothing. But since my diagnosis, I've just like.

Answered all of those questions in my head and with, you know, my college and education journey too. Like I never would've found that I'm so passionate about medicine and anatomy and everything and I'd never imagined myself wanting to go into that healthcare sphere. Like, you know, a lot of kids are like, I'm gonna be a doctor when I grow up.

I never had that until I was like experiencing the patient side of things.

Yeah. Well it sent you down a different path than you expected, but sounds like one that you're, um, you know, in reflection, super glad that it went the way that it did. Um, and also showed you who you are I think, and, you know, we have to tell ourselves to rest and relax.

Um. But also like, you know, you can get through such hard things and I think it's important to have that confidence. Um, and then also simultaneously be able to make the choice to chill out for a day and know, yeah, I could do hard things, but is it the best thing for me? Probably not. Exactly. Um, and to be able to one day share that with patients that you're taking care of, um, is gonna be so valuable and I think gonna even make this experience feel more worth it.

Um, yeah,

absolutely. I've, um, like I was mentioning, um, I've met a few dancers who also have pots, but even outside of the dance world, um, I was the first student at my school of 2,500 students to have pots. And since my diagnosis, which was two years ago almost, um. More and more dysautonomia patients have trickled into my, like, nurse's office at school.

And I'll talk to my nurse Casey about it, and she's like, yeah, like, um, anytime anyone comes in I'm like, do you guys know Corey? Because, you know, you're so, um, passion, passionate about talking about it. And I'm like, anytime someone with POTS will come in to the nurse nurse's office, um, like super overwhelmed or just like newly diagnosed stuff like that, she'll send them back to talk to me.

And I'm like, I just love talking to people who have been recently diagnosed and I feel like I have such a more like, understanding perspective with other people now and I've like learned to kind of come outta my shell. That I can be a super valuable resource for a lot of people that are going through similar things and that, that's just like really empowering to me.

Um,

yeah. Yeah. And you did that, um, today too, and our conversation and all the people listening are, are benefiting, I guarantee it. Um, so thank you so much for spending part of your weekend to, um, share more of your story. Um, and I will share all of the places that people can find you, um, on Instagram and your blog posts and everything else.

But, um, again, super proud to have seen you also grow and evolve and do all of these things, um, for our community and grateful for it as well. So, really, really appreciate it, Corey.

Yeah. Thank you for inviting me again. Um, I also just wanted to mention that I have really, like since I met you almost two years ago now, seen you as like, you know, that bigger sister type inspiration for me, and especially as you being an athlete as well, um, you've really inspired me that I can push through all of this and make something really beautiful out of it.

And I even mentioned you in my college essay, um, because oh my, I don't know, it's been, it's been such a part of my journey, um, even deciding what I wanted to do in college. So thank you. Wow.

My goodness. That's so sweet. Um, yeah. Wow. I'm like gonna tear up. Um, this really has been a life changing experience for me, um, in a similar way that you've mentioned.

I would've never found so many of the people that I now hold dear, whether that's, you know, we only communicate through Instagram every couple weeks or whatever it may be. But, um, but staying grounded in this community is also an amazing way to continue to have the motivation to push through some of the more challenging times.

All jumping over all those hurdles that I have to go through to one day, become a doctor and take care of the people that are gonna be in the shoes that we were once in sitting in that room, just waiting months or years or whatever it is to like, talk to somebody that cares. Um, this is what continues to motivate me and, um, I just can't say thank you enough also for everything that you're doing.

So, um. We will talk very soon and we will hear about, um, what your plans are for college when you've officially make that decision. Um, but best of luck with everything. Keep creating beautiful things. Um, and maybe I'll find my way to your website and get something anatomy related to put on my walls. Yeah.

Mm-hmm. Alright, have a good rest of your day, Cory.

Yeah, you too. Thank you.