Episode Transcript
00:01 Announcer:
Welcome to the Standing Up to POTS podcast, otherwise known as the POTScast. This podcast is dedicated to educating and empowering the community about postural orthostatic tachycardia syndrome, commonly referred to as POTS. This invisible illness impacts millions and we are committed to explaining the basics, raising awareness, exploring the research, and empowering patients to not only survive, but thrive.
This is the Standing Up to POTS podcast.
00:29 Jill (Host):
Hello fellow POTS patients and lovely people who care about POTS patients. I'm Jill Brook, your hyperadrenergic host, and today we have an episode of The POTS Diaries where we get to know someone in the POTS community and hear their story.
So, today we are speaking with Sofie who did a really neat research project that I heard about, so I reached out to her and asked if she'd be willing to talk about it with us, and she kindly agreed. So, thank you for being here, Sofie.
00:57 Sofie (Guest):
Thank you for having me.
00:59 Jill (Host):
So, for starters, can we just get the little intro to Sofie? Like where are you? How old are you? What are you passionate about? What are you up to these days?
1:08 Sofie (Guest):
Yeah. So, I'm 16 and I live in West Michigan. It gets pretty cold. And I am a part of a rowing team. I'm a coxswain, so I help steer the boat and call the commands, which is a really great compromise for someone who has POTS. So I don't have to do all the rowing, I can just sit there.
01:25 Jill (Host):
Oh, cool!
01:27 Sofie (Guest):
Yeah, it's it was a good discovery. And I used to be a dancer - I danced for 10 years before I got POTS. And I transitioned between that and rowing at about 14. That's a little intro about me.
01:40 Jill (Host):
OK. So, if we were to ask your friends or family to describe your personality, what would they say?
01:46 Sofie (Guest):
I think I'm either very, very active and ready to do something and I don't stop talking, or I'm just ready to chill out and read a book or enjoy someone presence. It's....there's not usually any in between.
02:06 Jill (Host):
[Laughs] Very cool.
So, you had mentioned dancing was a big part of your life up until POTS. Can you give us like a snapshot of what your life looked like?
02:18 Sofie (Guest):
I began dancing at around the age of 3-4, that time, and pretty quickly I was doing like a Russian [inaudible] training. So, it was pretty intense. By the time I was about 7 or 8, it was, you know, 20-25 hours, and then 9-10, it was 30-35 hour weeks. And it was very intense. It was a lot for anyone, especially someone that young.
And when I was about 12, I started getting very dizzy. I would almost pass out just doing very basic things while I was dancing, and eventually that kind of just spiraled into not being able to dance anymore, which was very unfortunate and difficult, but I loved dance.
02:56 Jill (Host):
What did you think was going on at that time?
02:58 Sofie (Guest):
Well, something you should know about me is that I've always wanted to be a doctor or go into the field of medicine. I mean, I kind of come from a family of doctors, so it's always been something that I've been passionate about.
So, when it first started happening, I had no idea what was going on and it was a little bit frustrating. I think that's a good word to describe the initial stages, solely because I could still do the ballet, but I just couldn't do it to the normal extent, which is, you know, that came with a lot of feelings of frustration. So, eventually, you know, you went to the primary care and they said, “Oh yeah, I don't know your blood work’s fine.”
And then I was like OK, I need to do my own research at this point, if no one else is going to kind of take initiative.
So eventually I stumbled across the POTS and I was like, oh, this seems very very similar to what I have. And eventually I got a referral to a cardiologist and she seemed to agree and we, you know, did the Tilt Table and eventually I got my diagnosis.
03:52 Jill (Host):
OK, and so then you just decided to find something else to love doing, and you discovered rowing?
03:59 Sofie (Guest):
Well, it was interesting. Freshman year of high school, I was in my history class and someone said, “Hey, you should join the rowing team.” And I was like, “No, I I'm sorry, like, I can't.” “Like, no you can just be a coxswain.” And I never heard that term before.
I don't think a lot of people know what a coxswain is, so I went home and I did my research and to me it seemed OK. You know, I still get a leadership role, I get, I get to be a part of this community, but I don't have to do the rowing, you know. I'm responsible for something else.
So, I reached out to the coaches and - I have very very amazing, understanding coaches who have been able to work with me to meet my needs. And I reached out to them and they were like, “Sure, being a coxswain sounds perfect for you.” And that was right at the beginning of COVID, so I didn't get my first spring season, but over the summer I was able to start and I've been in love with it ever since.
04:49 Jill (Host):
Great! And for people who don't know what a coxswain is, I think you kind of alluded to it but so, well, what is your job?
04:54 Sofie (Guest):
Yes, so a coxswain is kind of the brains of the boat. Rowing is very much about the power, but also you kind of have to strategize and you have to have someone steering the boat, especially in a boat of eight people.
So, there's boats of eight people and boats of four people that have coxswains, and they usually sit at the very back of the boat and they tell the rowers what to do. They steer the boat, which is very important, and they communicate with the coaches. They're kind of like a coach on the water.
05:21 Jill (Host):
That sounds nerve wracking. I mean, have you ever like accidentally steered it into something and crashed or like...? [Laughs]
05:28 Sofie (Guest):
I mean, that is a possibility, but you do get a lot of coaching beforehand. You know, you learn actual mechanisms of the steering. It's not super duper complicated and there's just a lot of support when you're first starting. And once you get the hang of it, it's pretty easy not to run into like shore, for example, but mistakes do happen, and I have run over a log underwater before and scratched a boat. That's my confession. [Laughs]
05:54 Jill (Host):
That sounds not too terrible. [Laughs]
05:56 Sofie (Guest):
No, it's very fun and rewarding.
05:59 Jill (Host):
So that sounds like a genius way to stay 100% involved with athletics without having to do things that your POTS won't let you do. That's great.
06:10 Sofie (Guest):
Yes, I wish more people knew about it because quite a few high schools do have rowing teams, and there's a lot of college rowing teams, so I think it's a great opportunity if someone is able to, you know, be around and be up for that long. I mean, it is sitting, but that still takes endurance.
06:26 Jill (Host):
So, between this and the research project that you did, it sounds like you are good at making lemonade out of lemons, and I'm excited to talk about your research in a second.
But do you mind by just asking like kind of before we talk about this cool thing you did, how does pots hold you back, if at all now? Like, what are your worst symptoms? And is it a big part of your life or is it not a big deal or...?
06:50 Sofie (Guest):
Yes, it still is a big part of my life. I mean, you know the second I get up in the morning, it takes me a long time to get ready 'cause I just can't be upright for that long.
And I've been having some pressure headaches recently that have kind of progressed over the past few months, and that comes with neck pain. And, you know, just still getting more new symptoms and trying to figure it out, which can be a frustrating process as I'm sure a lot of people understand. It still is always there, and I am on medications and I do have lifestyle changes that have definitely helped, but it is still a big part of my life. And I think a mindset I've kind of tried to adopt is that I can control what I can control, but also I don't want to let POTS dictate my life.
Like, I was invited to a concert and I was like, “Oh, I don't know.” But then I realize, you know, I can leave school an hour early. I can drink some Liquid IV. I can take my midodrine and do everything I can so that I can still experience what I want to experience, but not have to pay for it. I don't necessarily have to pay for it, but you know with the symptoms it can get bad. So I try to not let it hold me back, but I am aware of what I can and cannot do.
07:58 Jill (Host):
So you mentioned that some lifestyle adaptations had made a big difference for you. Do you mind sharing which ones helped the most?
08:05 Sofie (Guest):
Yes, so I drink a ton of water and salt. I think that's basically the first thing that doctors usually tell you to do. And I mean, it does help. I can definitely tell when I'm dehydrated.
Showering.....showering I only do at night because if I do it in the morning then I just feel really awful for the rest of the day. So I kind of do it at night and then I go right to bed. I get a lot of sleep at night. I try to keep my sleep schedule pretty consistent.
I think that's the gist of it.
08:32 Jill (Host):
Great. Let's see...so the research project that I heard about was a survey that you were asking people to do, and maybe you can tell us the back story first. Like was this for a class? What was the inspiration?
08:46 Sofie (Guest):
Yes, OK, I just want to start off by saying the research project is still in the works. I'm still analyzing all the data, but I can still definitely speak on it.
So, there's this College Board program called AP Capstone and it's two years of classes, so the first part is AP Seminar and the second part is AP Research.
So last year I took AP Seminar, which is a presentation-based course, and you really learn how to do the public speaking and how to actually write a research paper. And then AP Research is kind of like the next step.
You don't have to do it, but it's a 5,000 word research paper in a 20-minute oral presentation. You basically compose your own research project. You have the reins to do whatever you want. So, you can do something humanities based, or you could do something science based. You can do whatever you choose.
College Board has a curriculum to where you learn, you know all of the regulations and how to actually conduct it in an ethical way, which I think is very helpful because you could go and do this on your own, but it's very nice to have the structured aspect of it. And also something about the AP courses is that they're supposed to mimic a college level course.
So when I tell people about it, I say it's kind of similar to writing a master thesis. I think that's kind of the format that they want you to go for. So, that is the class.
And then the research project itself - when I was at Mayo Clinic, the doctor was telling me, “Hey, there's this really common type of personality that we see in these young patients with POTS, and it's this hard working, empathetic character,” and the the word that stuck with me was “empathetic.”
So over the summer when I was thinking about my research project, I started looking into emotional intelligence because empathy is a pretty big part of that. And emotional intelligence is still relatively new to being accepted in the scientific community, but there definitely is correlation with IQ, and it is definitely becoming more widely accepted as a research method.
But at the beginning of this school year, I knew I wanted to do something with POTS or autonomic dysfunction because I loved researching and it really fascinated me to learn about it and really understand why it was happening. I've always been like that. I've love to understand the complex nature of our body. I don't know, I love science.
And, you know, I was thought back to that Mayo Clinic appointment. I was like, empathy, that's emotional intelligence, so I wonder if there could potentially be a connection if they keep seeing all these patients who have such high empathy. Could there be a correlation?
So, I began to do a little research. First, I really wanted to understand why POTS was happening to help steer me in the right direction and see if there was a research gap I could identify. So, I really looked at why POTS was happening. And the one thing that really stuck out to me was something called a glucocorticoid. It's a mouthful. I'm probably saying it wrong, but it is a hormone that kind of acts like a neurotransmitter, and it's basically kind of the thing that triggers that fight or flight, and the extended release of that can sort of cause that long term symptoms that come with autonomic dysfunction.
So, I had this neurotransmitter in my mind and I started researching emotional intelligence.
11:56 Jill (Host):
Can I interrupt you for one second? I want to make sure that everybody listening...I think they will kind of have an idea what emotional intelligence means and maybe what empathy means. But just to be super certain, do you mind defining those things?
12:11 Sofie (Guest):
Of course. And also if you need to interrupt me in the future, please do, because like I said I will start talking and not stop.
12:17 Jill (Host):
[Laughs] No, it's perfect. OK, we love it. We love it.
12:20 Sofie (Guest):
So, empathy is similar to sympathy, but it's more putting yourself in someone else's shoes so that kind of mindset, you know. And then emotional intelligence is kind of like a measure of different aspects of your personality in a way. emotional intelligence is measured similar to IQ, but when we look at emotional intelligence we kind of break it down into these different categories. So the ones that I looked at were sociability, self control, empathy, well-being, and then you have that overall EQ score that I looked at in my survey. So, it's kind of easy to pinpoint the different areas of the emotional intelligence.
12:58 Jill (Host):
And ‘EQ’ being like emotional quotient, kind of like IQ stands for intelligence quotient?
13:02 Sofie (Guest):
Yes, yes exactly.
13:03 Jill (Host):
OK, so you get the overall EQ score and then that's separate from the empathy score?
13:10 Sofie (Guest):
No, the empathy is a part of it. But what's nice about breaking it up is that I can see, Oh well, this is statistically a lot higher than the average population, but this one is actually lower. Because when I was doing my research on emotional intelligence, I found this study done in Seoul, and they figured out that there was a relationship between stress and emotional intelligence.
Now, the interesting thing about it was that some aspects of emotional intelligence, if you had a higher quotient or whatever, you actually could decrease your stress. And in some categories, if you had the higher emotional intelligence there, it would actually increase your stress. So, that's why I really wanted to make sure I was breaking it down so that I could have comparisons.
So, in this study they found this protein called a cytokine. There's two types - an inflammatory and anti-inflammatory - and with that stress that they found to be associated with the emotional intelligence, the inflammatory cytokines actually increased, while the anti-inflammatory decreased.
14:15 Jill (Host):
I think that bears repeating. So, if I heard you right, people with the higher emotional intelligence had more of the inflammatory cytokines and fewer of the anti-inflammatory cytokines, suggesting that inflammation may be somehow associated with high emotional intelligence?
14:35 Sofie (Guest):
Well, that's where I got a little...I was like OK, I have these two very very separate bodies of information. So, on a whim I decided, is there a connection between this protein - the cytokine – and this glucocorticoid? [Laughs] I'm never going to say it right.
So, I looked it up and - would you guess - there was all these research papers on how they have this direct correlation and they inhibit each other? So I was like “Ding. Ding. Ding.” I had that little light bulb moment, and I was like, “Wow! Maybe there could be a connection between these two, if it seems that one inhibits the other.”
So, in a group of people with autonomic dysfunction, I wanted to see which areas of emotional intelligence were higher. So that's where I made my survey and I linked it to an emotional intelligence quiz or test that was fairly short, and I had them input their results. And so far, I can tell you a little bit about what I've analyzed.
15:30 Jill (Host):
OK, before we get there, could I ask a couple more questions?
15:33 Sofie (Guest):
Of course! Of course.
15:34 Jill (Host):
So, this is also fascinating. So when you say that you found that the glucocorticoids and the cytokines maybe offset one another, are you saying that you found that the glucocorticoids are anti-inflammatory?
15:48 Sofe (Guest):
Yeah, so it's the inflammatory cytokines that actually interact with the glucocorticoids.
15:53 Jill (Host):
OK. And is it correct that glucocorticoids are kind of like your body's natural steroid hormones? Kind of anti-inflammatory?
16:02 Sofie (Guest):
Yes, they are part of the corticosteroids. So it's...it's our body's response. It's that fight or flight, the adrenaline that's so commonly associated with POTS and the onset of POTS and why it's happening in our nervous system.
16:17 Jill (Host):
That's really interesting. And you said something a minute ago also, that was interesting to me, which was that some components of emotional intelligence are associated with greater stress, and I wondered if that was, for example, if you are really sensitive to justice or to the suffering of others, or to the experience of others, I see how that would make you maybe take on other people's burdens as if they're your own. Is that the kind of thing that you're talking about?
16:42 Sofie (Guest):
Yeah, yeah, definitely. It's the empathy side that they looked into in that research.
16:47 Jill (Host):
Yeah.
16:48 Sofie (Guest):
Do you have any other questions?
16:49 Jill (Host):
I do and I don't expect....I mean, I realize...you're amazing and you're brilliant and I don't....I know you're not like a trained expert in this and I'm asking you questions as if you were but so feel free to say you don't know. I'm just so intrigued by all this.
But then you had mentioned that other components of emotional intelligence are associated with lower stress. And the first thing that came to my mind was, is that because people sort of are emotionally smart enough that they can maybe defuse situations or see the bigger picture or something like that?
17:19 Sofie (Guest):
Yeah. So, there was a study done on a group of college students and they really delved into the emotional intelligence, and I think a lot of self-control is one of them - that if you have a better self-control or self-regulation, that that can lead to less stress, I think, especially in the college setting.
That's probably where that became apparent.
17:41 Jill (Host):
Interesting.
17:41 Sofie (Guest):
Yeah, I mean definitely. I want to answer your questions to the best of my ability, but I am no expert in anything.
17:47 Jill (Host):
Yeah, OK. Well, I have a question that you can answer this one.
The thing that really struck me as soon as I saw your little ad for your research online was, I was like “Yes! Yes! This so fits with my intuition that POTS patients are empathetic and they are emotionally intelligent.” And I had never thought about it, you know, relating potentially to our body chemistry, but it really really fit.
And in some ways I almost feel lucky. I swear, every single patient I have ever met in this community has been kind, has been smart, has been generous, has been caring, and I didn't know if it's like that in every patient group. And you know, maybe when you get around people who are suffering in a similar way as you, you just have this connection. But I have never really sensed that, and I I do sense that in the POTS community, that I do feel like there's this common thing that we have, and I had never known if maybe it was because we had all been gaslit for so long or we hadn't been taken seriously.
But what you are offering is a totally fascinating explanation for something that might account, and I realize I'm stereotyping, and it's not great to stereotype, but have you noticed - does it suit your intuition that our population has this trait?
19:11 Sofie (Guest):
I mean, I think when you look at the group of people that has autonomic dysfunction - I mean any type - I feel like generally there's a lot of hard-working nature and and that empathy is the big thing that stands out. And you know when I get into my results later, I think I'll have some information that's very compelling for you, especially with your intuition.
But, I would totally agree with that. I think what you're saying is completely what I've seen too, and obviously it's what doctors have seen too, as the Mayo Clinic doctor did point out this whole personality type to me, which kind of triggered my questions and my want to do this kind of research.
19:46 Jill (Host):
Yeah, I'm pretty fascinated that a doctor would have pointed it out because obviously doctors see all kinds of patients, and so I had kind of also wondered if maybe because at least traditionally, POTS has been such a difficult diagnosis to get that you really have to, I think, be at the top of your game. And you have to be...you have to be resourceful and you have to have grit and you have to convince people.
And so, I was worried that maybe only super talented people - talented at working the healthcare system or even getting diagnosed - and that maybe people who didn't have these gifts were getting left behind and they were just living a life of being gaslit. So it would make me very happy to think that that's not the case. For a physician that sees, you know, thousands of different diagnoses to point out that she thought that the POTS community had this trait is super fascinating to me.
20:41 Sofie (Guest):
Yeah.
20:41 Jill (Host):
I'll have to ask some of the other physicians I know if they see that as well.
But OK, maybe we should be a little more clear about what your methodology was. Can you talk about that?
20:51 Sofie (Guest):
For sure. So, I had finalized my research question, which is...is there a correlation between autonomic dysfunction and emotional intelligence in women ages 15 to 49, which is the general age group that we see POTS.
So, I decided that a survey would probably be the best course of action. And I created the survey on SurveyMonkey. I couldn't necessarily ask if the person answering survey had POTS or had the diagnosis, so I just asked if they identified as having symptoms - any symptoms at all - which is the best I could do with being 16 and not in college.
And then I went on and I had to figure out next, how am I going to distribute the survey? Because the other people in my AP research class, you know, they could post it on Instagram and they could reach the population that they needed. But I had such a specific group of people that it was going to be basically impossible to get a large enough survey size with just the people that I knew.
So then I thought, you know, there's all of these big groups on Facebook for people who have autonomic dysfunction. Now, some of these are support groups, and some of these are a little more leaning towards like the education side.
So I joined a few of them just to see what they were like. And I messaged the admins or the moderators and I said, “Hey. I understand this is a support group and I don't want to intrude or overstep any boundaries, but would posting the survey be OK??
And then I gave them a little bio. I said I'm 16. I'm in this course and most of them were very, very nice about it and they were interested, too. So, that's how I got my target audience. And it ensured that, you know, I was really having people who had autonomic dysfunction or thought they did answering this survey.
And I'm just about finishing up. No one has responded in a while. I had 200 responses and I looked just specifically at the females, and what was really, really interesting and what really struck out to me was the strong majority - I think about 80% - were more emotionally intelligent than the average person.
And when we look specifically at empathy - this is on a scale of 100 - So the average empathy of the respondents who were female and in the age group that I needed to look at was...it was almost 80.
And when looking at the normal average population, the average was closer to the 40s – mid 40s.
23:10 Jill (Host):
Oh wow! So, this is a standardized test where it has a known average?
23:15 Sofie (Guest):
Yes. I was specifically using the averages on the test site that I linked – it's IDR labs - but I think that's something very compelling and kind of what you and I both said that we noticed.
23:28 Jill (Host):
Interesting. Do you know offhand if there tends to be big age differences or gender differences in general, like how much of this could we attribute to your demographic generally having higher than average emotional intelligence?
23:43 Sofie (Guest):
I'm not sure.
Are you asking like about the genders more specifically, or just the demographic of someone with autonomic dysfunction?
23:50 Jill (Host):
Yeah, the gender and age, I guess, 'cause I didn't know if, for example, women tend to be a lot higher than men or older people a lot higher than younger people or anything like that.
24:04 Sofie (Guest):
Yeah, well I think generally there are going to be disparities between men and women. And then specifically the age group, I'm not entirely sure if there's that many differences. I mean, I'm sure age, like very very young, could have a difference.
But I definitely wanted to solely look at one sex, and I went with females because biologically, I know that they're more prone to that development of autonomic dysfunction or POTS.
24:30 Jill (Host):
So you found that they were on average double. So they had a mean score of around 80, whereas the mean score for the general population is 40?
24:38 Sofie (Guest):
Yes.
24:40 Jill (Host):
Wow!
24:41 Sofie (Guest):
I think it's important to note that, as I was saying earlier, emotional intelligence is still very new and beginning to be accepted in the scientific community, because I think we... we touched on this earlier, you know, are patients with POTS more empathetic because of what they've gone through? Or is it just something that they've always had?
And I think that's important to note that there could be some error there, and there could be more questions to answer in the future.
25:08 Jill (Host):
Yeah, absolutely.
And there's always the normal caveat of when you offer a survey online - it's possible that people who have the greatest interest in that topic are the ones who answer, for example. So maybe people who pride themselves on having high emotional intelligence were more likely to volunteer.
But I think it's really fascinating nonetheless, and I like what you're saying about does something about a neurotransmitter contribute to both POTS and emotional intelligence? Or does the experience of all this struggle with a chronic illness make you a much more empathetic and emotionally intelligent person? I could definitely see that being a case.
But under that circumstance, then you could presumably compare to other patient populations who have also been through tough maybe somewhat similar circumstances, but don't have the heightened sympathetic state, and so that would be pretty interesting.
26:05 Sofie (Guest):
100%. I'd love to continue this sort of research into college. So I think those...these are all great questions.
26:13 Jill (Host):
Yeah! You could apply for a Standing Up to POTS research grants.
Now, you had mentioned that you have long had an interest maybe in the medical field? Is that something that still exists for you?
26:24 Sofie (Guest):
100%. So, when I was young, like I said, the doctors they run in my family. So I would be playing with my grandfather's old stethoscopes and blood pressure cuffs instead of, I don't know, Barbies at their house, and I I loved it, and I would always force my parents against their will to let me play doctor. [Laughs]
And then as I got a little older, I mean, I remember I always watch YouTube videos about medical facts and I just thought it was the most fascinating thing. So then when I got this condition and I developed it at a younger age, I didn't understand the health care system and how difficult it was. And, I think it was kind of a lightbulb moment. I was like, “Wow! This is crazy that I've had this many doctors just completely invalidate what I'm feeling and this isn't OK.” And I'd always known I wanted to go into the medical field but...but this experience really shifted it in a different direction and it shifted it to have a purpose behind it, like a really strong purpose and desire to be that one doctor that hopefully most of us do find to be the one person to listen and help and advocate for you.
And I had that doctor and I realized how much that made a difference in my life because I was able to, you know, get through the day when before it was just doctors invalidating what I was feeling.
And it drove me to want to be that doctor, be that person, be that nurse, be that PA in someone’s life. Yeah.
27:54 Jill (Host):
That is so wonderful!
You know, I've always wondered what makes the difference between doctors who believe their patients versus doctors who gaslight their patients. And I hope that all the believing doctors haven't had to go through their own difficult struggle to get there, but I sure am excited for your medical career and all the people you're going to help. That's really exciting.
Can I ask you a couple more questions about your POTS?
28:23 Sofie (Guest):
Of course, of course!
28:25 Jill (Host):
Do you feel like POTS has taught you any life lessons?
28:29 Sofie (Guest):
Yes. A lot, and some of them were not ones that I wanted to learn. I mean, this is very cliche, but we really can't take anything for granted.
I mean, you know, dance had always been a part of my life. I mean, I was always in that studio and there were days where I wanted nothing else than to be taking a nap and not being on point for five hours, but I know that if I would have known that it was something that was going to come to an end, of course, I would have appreciated every hour I was in that studio more. Of course I would have enjoyed the the blisters and the gross bruises all over.
And, I mean, it's just something you don't know until it is taken away. You don't learn these life lessons until something happens. But, I kind of try to live in the moment. I think, while I am in a good spot with my POTS, I want to make sure I'm enjoying every moment. I want to make sure every moment that I'm in a boat coxing and in a race, that I'm enjoying it because I don't want to be negative and say that, oh this could come to an end. But, I mean, there's always that possibility and I think living in the moment is something that I've tried to adopt and try to make sure that I'm always integrating that into my lifestyle.
So yeah, that's the biggest one.
29:48 Jill (Host):
That's great. So, we have some questions that we call “the speed round” where we just ask you to say the first thing that comes to your mind. Would you be up for that?
29:51 Sofie (Guest):
Oh, no. [Laughs] OK, sure. I’m up for anything.
29:52 Jill (Host):
OK, perfect.
What is your favorite way to get salt?
29:57 Sofie (Guest):
Ooooh, Liquid IV. So yummy. [Laughs]
30:00 Jill (Host):
What drink do you find the most hydrating?
30:03 Sofie (Guest):
Just straight water. Ice water.
30:05 Jill (Host):
What is your favorite time of the day and why?
30:09 Sofie (Guest):
5:00 AM. I like to wake up at 5:00 AM and that's when I concentrate best and I drink a little bit of coffee because I can have too much caffeine. I drink my water, read a book, do a little homework.
30:20 Jill (Host):
I haven't had too many 5:00 AM’s yet. All right.
30:22 Sofie (Guest):
I don't know, I really like waking up early.
30:25 Jill (Host):
Great. OK.
How many doctors do you think you have seen for POTS?
30:29 Sofie (Guest):
Probably 15, at least.
30:32 Jill (Host):
How many other POTS patients have you ever met face to face in the flesh?
30:37 Sofie (Guest):
I don't think I can even say one.
30:39 Jill (Host):
What is one word that describes what it's like living with a chronic illness?
30:44 Sofie (Guest):
Gripped.
30:45 Jill (Host):
What is some good advice that anyone ever gave you about anything?
30:45 Sofie (Guest):
So, coxing is kind of one of the things that I can do, and I want to be a part of it for a long time or as long as I possibly can. So, I'm hoping to go through the recruitment process with college. There is recruitment for coxswains. It's a little different, since you can't just show them how strong you are. It's kind of more personality and what you are able to do in a boat.
So, one day, on a whim I looked up POTS and coxswain just to see if there was someone else who understood. And lo and behold, there was this one singular article of this D1 coxswain who had POTS. And she's a coach now. I reached out to her, and she was so thrilled that there was someone else and she wanted to help me. We so we had a call, and it was an hour, hour and a half, it was a very long call and it was nice to have someone that understands such a specific situation. I mean, being a coxswain, which already isn't a super common thing, and then having POTS and how to balance those two. And then even on the subject of being a D1 coxswain, aAnd you know that's a big big commitment.
And I think one of the the biggest things she told me - her name is Coach Frank - was that she said that, you know, POTS is going to be a big part of your life and it's going to dictate a lot of things. But if you want to do something, do it. Like, don't let that stop you.
I mean, I'm going to do this summer camp. I mean ultimately it didn't work out in the end because of health issues and it was in the Netherlands and it was a coxing camp and you'd get to row in Amsterdam. And I was.... I was very excited that I was even that even got in. But you know, when I was talking to her about that, she was like, this is going to be something that you're going to have, but don't let it stop you. And I think I think you hear that a lot from doctors and other people, but it doesn't really mean anything till someone who has been through that can tell you that.
32:36 Jill (Host):
So excellent! How neat that you reached out and made that connection. Wonderful.
OK, what is something small or inexpensive that brings you comfort or joy?
32:47 Sofie (Guest):
Starbucks. I can't lie. I'm still a 16-year-old. [Laughs]
32:50 Jill (Host):
[Laughs] Who is someone you admire?
32:52 Sofie (Guest):
My mom. She has kind of always been an inspiration and always been that person to push me to achieve my greatest potential. But she also has been the rock during the times of chronic illness, and I still have my drive to want to succeed on a career, and she's always been a great example of that.
So, I love her. She's my inspiration.
33:16 Jill (Host):
Oh yay, Mom! What is something that you're proud of?
33:20 Sofie (Guest):
I'm just getting through it. I think when you're in the moment of a really bad flare up or just, you know, the lowest point that you've been at, you don't know that you're there. It's hard to think in the future in that mindset, so I think that grit and that just constant drive that I'm going to get through this, I'm going to go to school, I still need to study for this test. I have accommodations, but you know, I still need to get through this.
I think, when I look back at the past four years, I feel pride and able to get through it and you know, finding coxing and being able to be a part of a sport and a community and still doing what I want in school.
And I think it's notable in anyone with POTS that, you know, you're still here and you're still getting through days and no matter what you do or don't do, you're still doing it. You're still getting through it and I think I think every day is a day to be proud of.
34:08 Jill (Host):
Yeah, and I mean I feel like you did a much better job than I did. It took me a long time to refind that lifetime of great things I still could do and really enjoy that brought me meaning and finally there, but kudos to doing it at your age. That's awesome. [Laughs]
OK, what is the toughest thing about POTS?
34:31 Sofie (Guest):
I would say, just aside from the physical symptoms, having people understand it, teachers understanding why I need this extra time, or my friends understanding why, oh I, had to cancel plans 10 minutes before because I found the floor and I I can't get up 'cause I'm so exhausted. It's that sort of thing.
And I think at some point you have to separate yourself from, you know, others aren't going to understand sometimes, and that's fine and you don't need them to understand and you have to be OK with that, but I think that's something that I want other people to understand.
And something I find hard is that I'm coxing and I'm telling all these people to work hard and do something harder than they think they're able to do, and I feel bad sometimes because, you know, I'm just sitting there.
But also I want them to understand that it's hard for me to have a 2 hour practice every single day, standing there like that's taken a long time for me to even be able to do. So I think just the dynamic, like, I'm there for my rowers, but I also want my rowers to understand that just because I'm sitting here and they can't see that it's hard, sometimes I want them to understand that it is hard for me to be there and sit there, and that's crazy to say, but it's the truth.
35:38 Jill (Host):
Right, right.
What is something that you are grateful for?
35:42 Sofie (Guest):
I think having a support system. I know that not everyone has a support system, but having that has kind of been the...the push I need to get through my days sometimes.
35:52 Jill (Host):
OK, I'm going to ask you to finish a couple sentences.
I love it when....
35:57 Sofie (Guest):
...when it's warm outside.
35:59 Jill (Host):
OK, next one. I hate it when...
36:02 Sofie (Guest):
It feels like my symptoms are going to dictate how my day or how an experience will play out.
36:09 Jill (Host):
Have you ever had to sit or lay down in a weird place because of POTS, and if so, where was it?
36:16 Sofie (Guest):
All the time! I lay down on the dock at rowing, I lay down on the tile floors while they're erging. I lay down in Target or sit down in Target. I have no shame. [Laughs]
36:26 Jill (Host):
[Laughs] Excellent. OK, I just have a couple more questions.
Is there anything that you wish more people knew about POTS?
36:39 Sofie (Guest):
I mean, on the topic of empathy I...I know that not everyone is going to be able to put theirselves in someone else's shoes, but I think just because it's not always visible doesn't mean that there's not a lot going on, and I think having a little compassion can go a long way in any situation.
And, you know, POTS is....it's really hard. It's a difficult thing to live with every day, and you know, that compassion and that that attempt to put yourself in someone else's shoes from other people. It just it goes a long way.
37:07 Jill (Host):
Yeah, and speaking of empathy and your super cool research, once you're all finished and you've written up your 5000-word report and everything, would you ever consider sharing it with Standing Up to POTS so we could share it with people?
37:21 Sofie (Guest):
Sure, I'd love to. I was looking into potentially publishing it to a student journal, i it does work out. I have some uh student journal in mind that I might submit it to, but I would love to. That sounds like a great opportunity.
37:33 Jill (Host):
Yeah, once it's published, once you can share it, we would love to spread it around.
So, is there anything that you would like to say to your fellow POTS patients who may be listening?
37:46 Sofie (Guest):
Thank you for listening. I appreciate the time.
And from a fellow POTS patient to another POTS patient, you know I see what you're going through, and I understand and I hope you know that there is going to be a future of people in the health care system, and I'm hoping that the health care system will go on an upward trend of empathetic doctors. I think that's very important, and I hope that everyone is able to find that doctor for them.
38:10 Jill (Host):
Amen! Well, we're excited for you from one of those doctors and I'm already happy for everyone who gets to be your patient in the future.
Sofie, thank you for sharing your story and your insights. We really, really appreciate it and I'm excited about all the great work that you're doing at such a young age. I can only imagine what you'll be doing 30 years from now.
38:32 Sofie (Guest):
Thank you.
38:33 Jill (Host):
So, thanks for speaking with us.
And hey listeners, thank you for listening. Remember, you're not alone and please join us again soon.
38:43 Announcer:
As a reminder, anything you hear on this podcast is not medical advice. Consult your healthcare team about what's right for you.
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