The Dysunderstood Podcast

Season 2 Episode 1: Sam’s Story Transcript

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

Hello everyone! Welcome back! I am so excited to be kicking off season 2 of the Dysunderstood podcast. Each week for the next several weeks we are releasing another episode.

In honor of dysautonomia awareness month, we wanted to share some more amazing patient stories from our community. I hope you learn something, connect with another community member, and overall just enjoy.

And Before we get started with the episode, I just want to thank and tell you a bit about the podcast and platforms main sponsor, Nurse Mates.

So during Dysautonomia Awareness Month, I want to call attention to a brand that has been with me and Dysunderstood since the beginning, which is Nurse Mates.  It was really special this year. We actually spent a full day together talking about the creation of the platform, um, doing a photo shoot and creating videos.

And they even built a page on their website just to highlight my mission and Dysunderstood. That kind of support means everything to me as patients living with misunderstood and chronic conditions are often overlooked. Um, it means the world that Nurse Mates is supporting me, this platform, um, and really this entire patient community that deserves so much attention, increased awareness, and Um, and just a lot of support.

Nurse Mates really, really cares about the communities that they serve, and it really lines up with their new tagline, Nurse Mates Because We Care. Um, it really couldn't be more fitting.  A little bit about the brand themselves, um, with over 60 years in the game Nurse Mates has been around since the beginning creating products that meet the needs of medical professionals um, and patients like compression leg wear, bags, blankets, Backpacks, footwear, watches, they've really expanded, uh, the market too, and their variety and commitment to quality have made them a trusted name for health care workers everywhere and really has been expanding to increase their market like they've always done.

patients that also rely on compression wear for symptom management. And I'm so thankful to have Nurse Mates as a partner on this journey. Um, and if you want to experience their support firsthand, head to nursemates. com and check out their amazing lineup. Uh, you really won't be disappointed. And they want to make sure that their products are accessible to everyone in the Dysunderstood community.

And so they've provided us with a discount code that you can find in the episode description. And stay tuned for giveaways and the new discount code offers that come along. And make sure to check out that episode description wherever you get your podcasts.  Thanks again to Nurse Mates for all their support.

I'm excited to introduce our guest. For the episode today, we are lucky to be joined by Samantha Pearson, who is a Stanford University varsity swimmer who grew up in Southern California and was actually on the same club swim team as I was in high school. Sam was one of the top collegiate swimming recruits at in the country in the 2020 entering class, she was a scoring member of the 2022 Pac 12 championship team contributing to Stanford's victory.

She was an NCAA championship qualifier in three different events. And in addition to her success in the water, she was named. A two time Collegiate Scholar All American for her accomplishments in the classroom. I've personally known Sam since she was a young teenager, and with almost six years between us, it seems that we have lived somewhat parallel lives, just a few years separated.

We have been reconnected over the last couple of months because of the experience that you will hear about today. And while I wish that Sam didn't have to go through anything that she has experienced over the last number of months, I am glad that this growing community does exist and I'm grateful for how our relationship has been a source of support for the both of us.

Recording in the  together. Let's jump into our conversation.  I had photos from  when I was healthy, and then I actually didn't have that many photos of me, luckily, in healthcare settings. I had one where I was getting this, um,  weird electrical test done. I saw that. When I went, I went to these doctors that  had me do all of these,  like,  Random exams to check like my brain waves to see if it was trauma that was like triggering my illness like all of these things which  at the time you could have convinced me to do anything to feel better.

So, um,  I think that  it was I was open to anything and everything at that point and, um, I talked about this in one of my, uh, stories, but I think I was one morning I had these glass vials.  Every morning I had to crack open a glass vial that had this really extensive like, seawater  that was from like, the deep ocean.

And like, to drink it in the morning to like, balance my pH. Which,  Now that I, like, eat a lot of salt, I realize he was kind of on the right track, even though the doctor at the time told me that dysautonomia wasn't a thing. Um, did you know about dysautonomia? Like, did you know about it before? So, he told me it wasn't a diagnosis, which is true.

Like, it's,  it's a syndrome that I had, which was POTS. Um, but he didn't look any further into dysautonomia, and so,  I had this testing done where  I had, like, these EEGs all over me, like, they were checking my blood pressure, my heart rate, like, all the, like, doing all these maneuvers, right? And they picked up on the fact that, like, my nervous system wasn't functioning as they expected it to, and so I simply had dysautonomia written on my chart, which meant just like autonomic dysfunction.

So that was the first time I had ever seen the word and I just happened to be looking at my chart when they were checking me out. The doctor set the,  the clipboard down on the table and I was like quickly reading over it because  I went so many times to these appointments and I was given nothing but  random supplements to take or  You know, glass vials of deep sea ocean water.

And at the time I was like, whatever, like I'll just try anything. Um, but I hadn't heard of it until I literally read it and I didn't know how to say it correctly even. Um, and then when I went home, I started looking at it or looking it up online. And that's when I saw pots. And so. I called one of my family friends who I knew had POTS for years, and, um, I told them, like, this was on my chart, and after five minutes, we had a conversation, and she, like, essentially diagnosed me over the phone, um, and was a physician, so she was, like, I, you know.

Encourage you to go see, um, someone that actually knows about this condition, um,  but I luckily at the time, you know, had a little bit of savings from  my, like, professional career to be able to see a doctor that doesn't take insurance and, you know, was working out of pocket, but  At the same time, I wasn't being helped, so, um,  I think it was very much a testament to,  you know, just hoping for any sort of diagnosis, and I think that's the really hard thing, because you don't, you truly don't want, you know, anything to be written on your chart just to know that something's wrong with you, but at that point, I was just dying for answers.

And, like, when I think about it, I had  So many resources, I had the entire Stanford Health Care, I had referrals and everything, and it took me multiple times advocating for myself.  Because I brought up Pots and Autonomia  to the physicians, and they told me that  Like POTS is a symptom, or a syndrome, so you have to have the symptoms to check off the boxes and that I wasn't dizzy for long enough or that I didn't say, and so then I couldn't be diagnosed with that, so it took me, even with all the resources I had advocating for myself and talking to people like you, who have POTS and have dysautonomia, to get that referral and then go there and then,  yeah.

And I think that's, I think about it all the time. There are,  Thousands, millions of people that are just not accounted for because,  I mean, when you are swimming or doing other things where you're required to be, like, completely in tune with your body and something slightly changes, you notice that. But most people,  one, are not in the privileged position that we are to be able to do something  that is, like,  for fun and for, you know, like it is for fun.

We, it, we are doing it by choice and we have these goals because we've worked towards something, but so many people are living with these conditions that  are having to work every single day and they don't have the option to not go to work. And, um,  they also don't have, you know, Like, the people around them to be able to support them in navigating the healthcare or even accessing it.

So, um,  yeah, you're totally right that you were set up for success in, in, um, in a lot of ways, but still struggled to get the answers that you needed.  So tell me about when you first started experiencing symptoms and what your thought process was when, when you started feeling off. Yeah, so I tested positive for COVID in January.

Um, we had just gotten back from the Olympic Training Center for our winter training and  For the most part, it was like a normal COVID infection. I had 103 degree fever and I was in quarantine for 10 days, but when I came out, I kind of just got right back into things because  we had PAC 12s just over a month away and NCAAs were right around the corner as well.

So I was already kind of feeling behind and I wanted to get back into things. So when I got back, I felt like the normal fatigue, having spent so much time by the water and just being sick. But the more I swam, the worse I felt, and normally when you get back in, you feel bad for a while, and then you kind of get your feel back, and you start getting into things.

So, initially, I noticed it in the water, where I just wasn't recovering, and I was kind of having these practices where if I tried to push myself, I would just kind of implode and  fall behind. So, that was the initial thing that I noticed. And then When January, or February came around, I started experiencing brain fog as well, where I would go to class and not be able to concentrate and then I would leave and not really be able to recall what the lecture was even about.

And on the weekends, when I would do P sets, that would normally take me an hour or two. They would take me the whole weekend to complete. So, I noticed that there was some, something else going on cognitively. And then, I also, now looking back, I know that there's symptoms. But, at the time, I just thought there were like, weird things happening with my body.

Like, I was getting recurring rashes on my neck and face. I was having some GI discomfort and nausea.  I had light and sound sensitivity. I was getting migraines. So just a lot of weird stuff going on and  I ended up going to the doctor's 14 times in February to try and figure out what was going on. And initially they thought it was maybe overtraining syndrome or relative deficiency in sport, relative energy deficiency in sport.

Um,  and so I really was in no shape to practice, let alone to compete. So at that time, I decided I would take a step back for the season and just try and get better and figure out what What was going on and so  they told me or they we decided it kind of as a team to  take two weeks off and then usually your symptoms will improve by then if that's what's going on.

And so I took two weeks off and if anything, things got worse and I would spend all weekend in bed like I would not leave. I'd go down for breakfast, come back up, have to take another nap. I was sleeping 12 hours a night  and during the day, I just remember. Not really being able to think about anything except for getting back to bed, getting back to my dorm room.

So, my health definitely continued to deteriorate despite taking the physical break and  when I came back in, they talked maybe this is psychosomatic, maybe like some depression or anxiety is going on. I met with psychologists and psychiatrists and both of them said no, like this is something physical. So that was definitely a relief to hear that it wasn't all in my head, because I think that there was a fear that maybe this is just like maybe I'm just like making this up.

Maybe this isn't real So, um, at that point,  the physicians decided that maybe we're looking at something more similar to chronic fatigue or even long COVID. So I was referred to the long,  long COVID clinic in  early March. And there I was diagnosed with  long COVID, which is post acute COVID syndrome. And because it's a syndrome, you can't just like test for it.

You have to check off enough symptoms. And so I checked off enough symptoms, but There were still some symptoms that I had that were unexplained.  So I went on a medication and  I started to feel better. I was able to do more. I started working out a little bit. And the quarter wrapped up and I went on spring break to my grandparents house.

And my grandma was recovering from a stroke and I did just some rehabilitation exercises with her. And I just remember my heart rate skyrocketing and I was out of breath. And I was like, I'm a Division I athlete and I can't even keep up with my grandma. And it was simply just standing up and down in a chair or stepping over a pillow.

So, I knew that something else was going on even though I was getting better. And so, when I came back, I talked with the physicians again. And after talking to you and some other people, I brought up dysautonomia and POTS. For And they told me that I did not have it because I didn't faint or I wasn't dizzy for long enough.

Um,  but I have a really good training staff and he was still concerned, my athletic trainer was still concerned that I was experiencing these symptoms. And he was able to get me a referral to the autonomic department. And so there I was able to work with an autonomic disorder specialist and I was diagnosed with POTS and Mast Cell Activation Syndrome.

Wow.  Well, how many times did you have COVID before this all happened? This was my first time getting COVID. So last year everyone on my team got COVID except for me and I was like, Oh, like maybe I'm immune or whatever. I was not immune. It's so interesting. I, I don't know exactly all of the data on this, but I,  As far as I know, people develop long COVID after like the first or second infection.

Um, and people say, you know, the infection's gotten a lot more mild since the very beginning, but it is pretty crazy that it took like three full years for this to all happen for you. Um,  and I remember our conversations and, um,  you know, without giving like unsolicited, unsolicited medical advice, um, I was like curious about your symptoms, so I remember, do you feel dizzy, do you like, do you feel like your heart's racing, all these things, and at the time you were like, no, but I think that when you're like  first experiencing all of this, especially when it comes on so acutely, Like you can't even manage thinking about all the things that are going on with your body.

And I think that the fatigue was probably the most debilitating at first and prevented you from, even considering, you know, whatever else was going on because you just didn't have the energy to think about it. All you could do was like,  you know, drag your feet through the day. Um, And also blood pooling.

I had no idea what blood pooling was. And then I was looking at thought stuff and then they talked about blood pooling and I looked and I was like, Oh my gosh, I have blood pooling. Like, I didn't even know what that was. Yeah. So, And did you notice any, like, symptoms, like, looking back on your life before, did you ever have any of these symptoms, even mildly?

Not that I can think of, no. Okay. So, like, you, you don't have, like, The blood pooling, for example, like your feet and your hands weren't ever really red or dark before. No. Wow. See, I think that some people, like, are predisposed to, to developing,  like, multiple kinds of syndromes because of, like,  either their anatomy or, like, just different risk factors.

Um, and other people like you, it's like, it comes out of the blue. Um, and I think  another thing that I'm really glad that you were able to. experience was the validation from the psychiatrists and psychologists that  it was something physical because oftentimes people are told, you know,  this is anxiety or depression.

They're sent to those medical professionals and then  psychiatrists or psychologists kind of like take the other physician's word for it that they have symptoms of these things and don't really unpack that for themselves. So I'm glad to hear that, that they did kind of like, Investigate on their own accord.

Um,  so you said that  you were immediately able to reflect on the fact that You're a division one athlete, but then keeping up with your grandma was difficult. Would you say that there were multiple of those moments where it was helpful for you to know like this is not in my head that something is going on?

Yeah, so I think in the beginning it was really hard for me because like you said I didn't know what was going on and I was very kind of internal about it. And for me, externally, just having my friends be like, Sam, what's, what you're doing right now is so different from what you were doing before. The fact that you can't go to breakfast without taking a nap is not normal.

This  is,  I think, just like the external validation from others who are with me all the time, that was really helpful. Um, and then just  the fact that I could barely bike across campus. I could,  I could, couldn't walk up the stairs without my heart rate like pounding in my ears. I think those were things that  really kind of triggered me into thinking that something physical.

Yeah,  I think when you, you also get used to whatever routine that you're, you're forced into when you're managing all these conditions that,  Like your reduced level of activity becomes a normal and you think like,  oh, like this is what I've been doing all along. You somehow convince yourself of that and the human mind is,  it's really crazy how we are able to adapt and I think it's a coping mechanism.

Because otherwise, like, you would go crazy and  I don't say that, like, lightly. Um,  I think it would be incredibly  challenging on your mental health. It's already so devastating on your mental health and, um, and like you said, it was not a psychological condition that was causing you to have all these symptoms, but the presence of all these physical symptoms can absolutely lead to, like, psychological challenge.

So, can you talk a little bit about how If at all your mental health was affected throughout all of this. Yeah, definitely.  I would say that during this time I was depressed and having pretty bad anxiety. I, uh, Well, for one,  there's this feeling of I was stuck in my dorm room and my life had just been completely put on pause while everyone else's life continued to move forward, and that was something that was really hard for me to kind of deal with at that time.

And then the uncertainty of will I ever feel good again? Will I ever be able to do the things that I love to do again? And so I think  that really contributed to my depression anxiety. And then another thing was during this time, I wasn't home. I was in school away from my family. And so it was definitely hard to kind of do all this on my own.

And my family was there for me in every way they could be. But, while I was experiencing these feelings, I guess, um, my teammates really were able to kind of be there for me and support me, even if they didn't necessarily know what was going on. And so I feel really lucky that I had a good support system for myself, um, during this time.

Yeah, me too. And  that, I think, is  missing for a lot of people, and especially those that, you know,  Develop these illnesses  as a result of COVID and especially during the pandemic. It's like  we weren't allowed to be around other people. Um, and so the isolation like felt even more real. Um, and like you said, it's like your life felt like it was  put on pause while the whole world continued around you.

Um,  And it's like a really hard thing to  acknowledge, and especially in the moment, like,  trying to convince yourself that, like, it's all going to be okay is a really, really challenging thing. Um,  especially when you and the physicians can't get to the bottom of it. And so, I think a lot of people relate to that sentiment.

Um,  and so.  And you, like, want to be able to tell people, oh, this is what's going on, this is why I'm not feeling good, this is, and you can't, because you don't even know what's going on.  Yeah.  And especially in a position  in athletics, I think  it's really hard to  have very public goals, have public aspirations, even if, you know, the public is just 20 people that are on your team, like, you have expectations for yourself, and other people may have expectations, and not being able to feel like you can achieve them.

meet the requirements to try and reach those expectations is really, really hard. Um,  and so I think, you know, everybody has to come to grips with some sort of change in identity, whether, you know, you experience this illness for a year or some people who end up managing it for the rest of their life.

There's definitely where you have to reflect on, okay, like this is a part of my life and it's not all of my life  to be able to kind of move forward and be able to heal. So talk a little bit about how you,  you know, managed. any shift in identity?  Well, initially, I think  when I wasn't able to compete and I wasn't able to contribute to my team's pursuits, I think I was really ashamed.

Um, that was one of the feelings that came up for me that I wasn't able to contribute. Um, and  I swam for, you know, 10 years leading up to college and it was my goal to be able to go to Pac 12s and to be able to go to NCAAs. And so when you aren't able to keep up with everyone. There's this feeling that you're kind of falling behind and you're letting people down and so initially that was definitely something that I felt come up in myself.

But,  you know, as I've been dealing with this, and I've, I guess I've had to recognize that I'm competing in a different body now, and that it's more complex in that I'm dealing with a chronic illness, and I have to listen to my body. I think I've gotten very far. Because  I pushed my body to do things that I didn't think I could do.

And  I can't really do that anymore. I have to listen to my body. And so getting back in the water, I've had to kind of balance  dealing with this. But then also, I would never want to use this as an excuse to not work harder, to not do things, and to not push myself. So it's definitely been a balancing act, um,  as I've learned to deal with this.

Yeah.  I think like you said, you  are successful and in the position that you're in because in the past you were able to ignore how you felt and push through, and I think there's something very powerful in  taking the reins on your own life and your own body.  Um,  and being able to like,  make the decision of like, okay, like, I know that this is what is best for me, even when It feels like I need to be doing something else and we've programmed ourselves.

This goes for  any life pursuits, like any position that people are in, like not just athletics,  but you  put your own wellbeing on the back burner a lot of the time in order to either support other people. If you have a family in order to like get good grades, um, in order to have a successful company, like your wellness, oftentimes is a second priority to everything else going on and  these illnesses have an interesting way of like forcing you to kind of change your  ability to change priorities.

Um, and I think that I am a person that  has always been  forced to take a step back and it's never been on my own accord until I developed, you know, chronic fatigue and,  Uh, excuse me, ME, CFS, and dysautonomia. Um, it was like at the end of every single quarter of school, it was like my body would get sick, I'd have to lay down for a week, and I would have no choice.

Otherwise, it was like, go, go, go, go, go. And now, I've learned, like, what my limit is, and I just  I get close, but I no longer like surpass, surpass it quite as often because I know the consequences. And I've felt like I, even just in the past month and a half that I've been swimming, I'm starting to be able to tell like normal fatigue from HOTS or long COVID fatigue.

And they are very different and Like, you know, being a division one athlete, the fatigue you feel is nothing compared to the fatigue you feel having a chronic illness. So I just want to put that out there. Um, yeah, it's a, it's a fatigue that  can be  high. I always say tiredness versus fatigue, or  it's even like soreness.

It's like with the energy that you're expending in athletics, it's like you can always push a little bit further when you're tired. It may not be quite as fast or as strong, or you may not jump as high.  But you're still able to do something, whereas  the fatigue with chronic illness is inexplicable unless you've experienced it yourselves.

So,  um, so talk about your  journey of coming to better understand these illnesses. You're a great student, and Um, how have you become a student of your own illness and what resources, I guess, have you leaned on in order to get there? Yeah, so while I was going through all of this, I was in, um, I was taking human biology classes and so it was kind of this, like, serendipitous moment where I was going through all of this, but then I was also learning about the nervous system and the autonomic branch and what different things affect it, so for me, I was really lucky again that I was learning about how it affects digestion and your blood pressure and your heart rate as I was being diagnosed with these things, but I think for me, I just use the internet a lot, um, looking up symptoms, um, and then also relying on other people I know who have gone through this.

Um, and connecting with them. I also, um,  use TikTok. I like, I love TikTok. I go on TikTok a lot. And so, there are a lot of creators out there who have this and who are very open and willing to share their story as well. Yeah. And this is, I know there are other conditions out there that, um,  are rare and the science is also very behind on, but  I think that this is very much a community led effort.

Um, and it's expanding in terms of how much, um, attention is being given to these illnesses, and so we are learning more. Um, But so many people learn how to manage their symptoms  with two things, trial and error, figuring out like, oh, I did this yesterday and it didn't make me feel good, maybe I'll not do that today and see what the difference is.

And two,  who out there is on Instagram that  Is saying that they have these symptoms or is diagnosed with the same thing and what are they doing and what is it that I can try, what can I learn from, um,  and using kind of those two things to try to find a happy medium where you can, you know, do certain things on a daily basis without,  you know, reverting back to the way Yeah,  I think trial and error has been a big part of me understanding my own pots and my own long COVID because it does exist on a spectrum.

But I, for me, mine, the biggest flares I've had have been during finals and midterms week. So I know that stress definitely does play a role. Um, for a while weights was kind of causing me some issues and I've started using compression socks and making like taking salt tabs beforehand. And so I think that Like you said, looking at how other people manage their symptoms and then trying that for myself has definitely been really helpful.

Yeah,  and with having to make adjustments to how you approach your training, can you talk a little bit about  the, I guess, discussions that you have  with yourself while you are training when you're Not feeling 100 percent and what that looks like.  Yeah. So when I first came back and the first kind of flare that I had.

I kind of went back to my old thought process of just push through it, just push through it. Like you can do it. Um, and I was able to swim that day and I pushed through it. And then the next day I felt so bad and I had to take two or three days out of the water. Um, so I learned that lesson really quickly that if I am not feeling good, I need to get out or take it easy because I will end up hurting myself more and having to spend more time out of the water.

Yeah.  Um,  it's funny because we were swimming together during the pandemic, um, when I was still in the mode of trying to compete, um,  and I would come to practice and then you wouldn't see me for a couple of days and then I'd come back and I would do maybe a quarter of the practice at a very, very slow pace and then maybe be able to come back the next day.

And, um,  You know, it's,  I  will never ever wish this upon anybody, um, but I'm glad that you have been exposed to this beforehand, given the circumstances, um,  and we're able to know that, like, other people that you know are going through this. And are, you know, able to manage and do things that they're excited about, um, and kind of reshape their life into something that they're really proud of.

Um, and I think I really wish that I had had that for myself. And so that's part of why I started this platform and this community was to give  people the opportunity to hear about these things. Especially if they're new to managing their symptoms or new to diagnosis or. Even if they've been in this community for a long time, but don't have, um,  like,  haven't had the opportunity to hear other stories and, and know that, you know, what they're going through is, is not, um,  they're not alone in that.

And  I think just being, like, for me, part of my healing process being understood. By you, and having people there for you is such an important part and can make a tremendous difference, so. Yeah. I think that work is really important. Yeah. I remember being at home when I was managing all of this. Um, I went from like, being a professional swimmer to, and taking care of myself completely.

Like, I had graduated college, I was, Living in my own like home with roommates, um, but I was able to do my own laundry and cook and support myself financially and it was like this huge milestone and then a couple months later I found myself like back as a 23 year old like living on my mom's couch completely,  you know, unable to take care of myself and  I say like, thank God for the pandemic, which the pandemic was the reason I am in this situation to begin with because we both think our, you know, conditions were triggered by COVID.

Um, but my mom was able to take care of me. And like you said, like being understood by the people around you is a major part of the healing process. And my mom knew right away that something was off. And I've sat in enough doctor's appointments now with. Like other parents with their children, you know, going through this, um, in my training to be a physician and,  um,  people that are close to the people managing this know like wholeheartedly that they're being deeply affected physically.

And it's not, you know, all in their head and it's not a cry for help. And, you know, I had.  times where it was never explicitly stated to me, but I got the feeling that people thought that I was trying to get out of the situation I was in because I was nervous that I wasn't going to make the Olympic team or, you know, that I was not strong enough to manage the pressure of everything that was going on.

Yet I had done it for 18 years and had gone through, you know, a lot of challenge. Um, and I wasn't going to give up with the last six months of, you know, whatever was going on. And so I see this over and over again in people like you too, where it's like high achieving, um, incredibly capable individuals that all of a sudden have a decrease in their functioning.

And it's hard for me to imagine someone just like, not. Believing that, that something physically has changed.  And it's especially hard. I've had this conversation with my parents because they came up for a lot of the appointments with me. And when a doctor is sitting telling you, no, you don't have this, or no, this, nothing's wrong, it's hard for them to  know what, like, obviously they know what's, something is going on and they want to support you and be there, but it's hard when a doctor is telling you that nothing is going on.

Yeah, I'll  They just take that answer and they're like, okay, let's move on to the next thing. Luckily, again, I had a lot of people telling me about POTS and so I know me and I kept, like, going down that route. Yeah. Yeah, I had a conversation with someone yesterday that said, like, be persistent and, like, don't give up looking for answers.

And  Like, it may take a really long time, if you have that feeling deep down, um, continue to,  you know, listen to yourself and trust your intuition, and so many women are  the ones that develop these conditions, and I think  oftentimes symptoms that they experience are, are written off for one reason or another, and  like you said, when a, when a doctor says to you that, that nothing's wrong,  it does cause, you know, You to question yourself or someone else to question.

Um,  but the more I learn in medical school, the more I realize I don't know. And I think that it is important for medical providers, wherever they are on, you know,  The societal hierarchy of, you know, of medicine, whether they're a nurse or a doctor, I think, like, being humble and understanding, like, no one has the answers, and, you know, the medical field looked very different even 50 years ago with what we were able to do for people, and so, you know, answers could be right around the corner, um, and I think giving every patient  the benefit of the doubt is, like, a duty of a medical professional, um, um, um.

And I know that if one day you decide to pursue that route, your experience with all of this is going to, to suit you very well, and even if you're not a medical professional, I think, like,  having this experience and this perspective is going to help you, um,  You know, just have  more empathy for people in circumstances that you may not understand.

Um, but you have the experience to know, like, you don't want people to go through what they're going through alone.  I think the part when you said just having more empathy for people going through something that I don't know about is, That's spot on because  even when I was talking to you this fall about what you were going through, I had absolutely no idea what dysautonomia was and going through something where I felt like I was misunderstood, um, I feel like I've grown to have a lot more compassion towards people who have chronic illnesses or who are dealing with something that maybe I don't know exactly how that feels.

And so, yeah, I think I've grown a lot.  Yeah. I think I am.  I'm a much better  person than I was a couple of years ago, and I'm  more proud of the person I am now than I was of the person I was a couple of years ago. And I think, like, I'll be the first to admit that, um,  I needed a little bit more perspective, and I'm grateful for everything that I've gone through to be able to develop that, because  You don't know what it's like to walk in other people's shoes, and I think that you can have a lot more gratitude moving forward every single day in your life for what you do have, like, with that experience of, like, everybody is managing something in their life, and I have no idea what that is, and so having a little bit of extra patience, um, You know, giving people a little bit more encouragement, a compliment, those kinds of things, they, they really do go a long way.

And, and I benefited from the wonderful people that surrounded me while I was really in the thick of this. And, um, I think paying that forward is. Is really important and, you know, makes me feel good too. Um,  and so I'm, you know, excited to continue to  talk about all of this with, with people like you. And my life has also gotten so much richer by, you know, Being surrounded by others who have these shared experiences that also want to make a difference because of it.

Um, so I consider myself really lucky, even though I would never wish this on someone else. I'm incredibly grateful for the position that it's put me in.  Yeah, I think, like you said, just being grateful for everything. I'm so grateful that, like yesterday, I was running late for some practice because I was at my internship and just, The fact that I can go from my internship to swim practice without having to take a break or take a nap, like, I was just so grateful that I was able to do that.

Yeah, and the small things in life that we often take for granted, I think  now I have a better perspective for, and when I do have the opportunity to see a friend or do something spontaneous, it's like,  I have more room in my heart to be grateful for that than I did before when my life was full of expectation of like, getting as much out of life as I possibly could.

And now I'm much more intentional with how I spend my time. And, um, I'm very appreciative of that like change of pace.  Well, thank you so much for chatting with me today. Um, for all of you listening, Sam is going to continue to support Dysunderstood. And, um, Is doing some really amazing work in helping this community and, um, is going to continue to pursue her degree at Stanford and compete on the swim team.

And so hopefully you'll continue to hear from her. Um, but. From me personally, it's been a pleasure to be able to reconnect with you, even though, um, this is something that I wish you weren't struggling through, but I'm glad that we have been able to, um, be there for each other. And I hope that the listeners have taken something from this episode and, um, we will hear from you all hopefully sometime soon and talk to you later.

Hope you enjoyed that conversation as much as I did. If you would like to share your Dysunderstood story, you can head to Dysunderstood.Com/contact us. You can find all things Dysunderstood at our website or @Dysunderstood on Instagram and TikTok. And you can find me @ellaeastin. Have a great week.