Episode 20 – POTS Diaries with Kate Link: https://tinyurl.com/rzx8ejew

00:00:01 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.

00:00:29 Jill (Standing Up to POTS): Hello fellow POTS patients and nice people who care about POTS patients. I'm Jill Brook and today we are speaking with the talented Kate Pederson who is a very important founding team member of Standing Up to POTS. She is not a POTS patient herself, but the loving sister of a POTS patient who donates a lot of her time running several important parts of the organization, including making all of the social media graphics, coordinating the patient spotlight, and more. If you've heard our prior episodes, then you've heard from Kate's sister, Lily Pederson who developed severe POTS in 4th grade, and you've heard from Kate's mom, Dr. Cathy Pederson. These three together are responsible for so much of what Standing Up to POTS does in our efforts to improve the lives of people with POTS. Kate, thank you so much for joining us today.

00:01:24 Kate (Guest): Hi, thank you so much for having me.

00:01:27 Jill (Standing Up to POTS): For starters, I think anyone who has seen your graphic art over the past several years might be surprised by your age. How old are you?

00:01:32 Kate (Guest): I'm actually 16 years old.

00:01:35 Jill (Standing Up to POTS): So tell us, how would your friends or family describe your personality?

00:01:41 Kate (Guest): I'm pretty shy until you get to know me, but then once you get to know me, I just talk a lot and I love to go out and do activities and keep myself busy.

00:01:52 Jill (Standing Up to POTS): So, have you always been into art or graphic art or graphic design?

00:01:59 Kate (Guest): Yeah, when I was little I always wanted to be a designer, like fashion design and then graphic design, and now I sort of want to go into marketing which would still work with that design aspect.

00:02:11 Jill (Standing Up to POTS): Neat. Well, I'm excited to talk about some of that that you've done for Standing Up to POTS, but let's start with maybe what was it like being part of a family so affected by POTS?

00:02:24 Kate (Guest): Well, it was really hard because my sister was diagnosed when I was really little, so I don't really remember too much of the details, but I definitely remember it made me feel different than most of my friends a lot of the time, just because we made so many changes as a family to accommodate to her needs.

00:02:44 Jill (Standing Up to POTS): Do you remember what any of those were?

00:02:48 Kate (Guest): We didn't go out as much like we used to go to the zoo and have big family vacations and we just didn't do that anymore. Me and my sister used to play video games and all this stuff together, but then she wasn't feeling good enough to do that. And we actually used to play in the backyard all the time for hours just running around making up stuff, but she didn't have the energy to do that anymore.

00:03:13 Jill (Standing Up to POTS): Yeah. Now I think you've said that you actually feel like it's a little ironic that it happened to your sister because what was your health like growing up?

00:03:26 Kate (Guest): Yeah, I had actually really bad issues growing up. I had really bad stomach problems so I would throw up after every meal, like I couldn't keep any food down. So we actually went on a really strict diet almost as strict as the elimination diet that we went on for Lily. And to try to figure out what was causing those problems.

00:03:48 Jill (Standing Up to POTS): So, when you were nine years old, you illustrated a book that your sister wrote about her life with POTS. Do you remember much about?

00:03:59 Kate (Guest): Uh, I don't really remember the importance of it as a 9 year old. I remember just like sitting in the craft room, drawing pictures and stuff that would go on this book, scanning them into the printer. I never really understood how big of a deal it would turn into. So looking back, it's really cool to see the difference it made and see all of the people that it's been distributed to.

00:04:21 Jill (Standing Up to POTS): So one thing I really notice when I look at the book is that the pictures are so in sync with the words, even when she's describing some pretty tough things and some pretty bad suffering, and I feel so touched for her that you read her words so closely, obviously, because nobody could have drawn those pictures unless they had really, really empathized. So anyway, I think that's beautiful. Why did you get involved with Standing Up to POTS?

00:04:56 Kate (Guest): It just felt like the natural thing to do. We started out with the book and then founded Standing Up POTS as an organization and I always helped out with like packing T shirts and books for 5K's, but I wasn't super involved yet until last spring when the pandemic hit, actually. I had all this free time on my hands. I had nothing to do. I would tell my mom that I was bored and she was like, "Well, actually if you'd like to, we could make graphics for Standing Up to POTS because I'm getting burnt out in doing them," and I thought it was a great idea and I had so much fun playing around with everything and being able to create stuff. So from there, like, I've really been passionate about creating graphics, seeing the impact is made, adjusting to how people react to it. So it's been a really cool experience.

00:05:47 Jill (Standing Up to POTS): Ooh, talk more about that. You said it's been fun to create graphics and then see how people react to it and adjust. Can you can you talk more about that?

00:05:58 Kate (Guest): Yeah, of course. So like when we started, we had about 400 followers and now we're in the thousands and it's super cool. So we've been doing different types of posts, and I've seen that more visual posts help. Like, I had a post about an iceberg and it's like "This is what you see, but this is what you don't see," and stuff like that for people, even with POTS and without POTS to really understand. And be able to - it's sort of like a metaphor so they can relate to it and they can, because it's such a hard thing to comprehend since it's an invisible illness, you can't really understand until you have it. So stuff like that that's relatable to everyone that usually does really well, which I've learned.

00:06:45 Jill (Standing Up to POTS): Yeah, I've wondered if this process has made you super sensitive to how patients feel because you see how they react to every post. And you know, maybe we should back up a second and describe some more of your posts 'cause on different days of the week you have different types of posts and some are inspirational, some are informational. So, do you want to talk about some of the different types of posts that you make?

00:07:14 Kate (Guest): Yes, so we have three designated days for things. So like motivational Monday, fact Friday, and Spotlight Sunday. So for the motivational Mondays, it's just like little quotes or messages to patients to tell them to keep going and that we hear you, we see you, we're here for you. And then fact Fridays - that's more for our practitioners and everyone, just some facts about POTS that may not be well known, and you may not know how to get to that information. And then the spotlight Sunday initiative, I started that - wow - a few months ago, but it's really taken off. A lot of people have really loved it. I have a survey for them to fill out about like the worst symptom, how many years till they were diagnosed, coping strategies, why help raise awareness - stuff like that. And it's just been really cool to go through the forum and see people’s stories and really hear from them and be able to connect with them. And that's and others have a post that has done really well on our social medias. People have just been commenting and carry out conversations with these people and just meeting each other. That's really what a lot of people want, just to build a support system, meet other people who can relate to what they've been through.

00:08:31 Jill (Standing Up to POTS): Yeah, do you want to tell people where to go if they are interested in signing up for that?

00:08:37 Kate (Guest): Yeah, on our website there's a page for that and also on our social medias there should be a link to that.

00:08:46 Jill (Standing Up to POTS): OK, perfect. So back to my original question, which is do you almost feel like you know what it's like to be in the head of a patient now that you have created how many posts - hundreds? - and seeing how everyone reacts to them?

00:09:04 Kate (Guest): Yeah, I definitely feel like I understand a little better than just a normal person because I've grown up with my sister and gone through trying to figure out a diagnosis and bringing her ice packs for her legs and everything like that. And so, I feel like I've gotten a different perspective from a sister point of view and also from these spotlights I've gotten to hear from so many people of all different ages and genders and everything. And so, I've learned things that I haven't previously known from my sister. So, I feel like I could never really understand what they've been going through, but I feel like I have a better perspective than a lot of people.

00:09:46 Jill (Standing Up to POTS): So especially your informational posts are very rich in facts and they cite their research sources. You probably know more about POTS than most people at this point. But where do you get the information and material for your informational posts?

00:10:12 Kate (Guest): So, my mom is a professor at Wittenberg and she knows about research and stuff like that, so she's been able to pull through and read those really hard to comprehend papers and pull out information that we can convey to other people and an easier to understand way.

00:10:29 Jill (Standing Up to POTS): Yeah, you know, I think you guys make a really special team, right? Because you guys do things that would be difficult to do if you didn't live in the same household and your mom is already into all of the research anyways and you are into the graphic design. And I always think about how, uhm, you know, your home in Ohio is like this beacon of POTS progress to the whole world, and I am guessing none of your neighbors know that or see that. But the three of you all of the time that you donate and give to this is not only creating tons of progress, but it's the thing that allows Standing Up to POTS to do so much on a shoestring budget. So you have done a lot of other things for Standing Up to POTS also, right? What other things have you done?

00:11:27 Kate (Guest): Yeah, so along with the social media content I've been super involved in the 5K. Like, I've designed most of the T-shirts for them and I helped set up. But this past year we actually had to do a virtual 5K because of COVID-19, which was a different experience. But it might have been for the good. We were able to ship out T-shirts to over 29 states I think, and actually I was coming home from a competition one night, so it was like 10:30 PM, and my mom and I stayed up and we just packed T-shirts all night. So then we could ship them out the next day for the 5K. So, it was really cool to do that. And then we asked on social media for people to post a picture of themselves in their shirts so we could see it and make a collage and we got an amazing response. I'm really happy with that one.

00:12:21 Jill (Standing Up to POTS): That's fantastic. Now you have also created YouTube videos. Tell me about that.

00:12:30 Kate (Guest): Yeah, that's another recent initiative. We have web pages on our website and recently we decided to start making videos so that people could just watch it and see a quick overview of stuff like common comorbidities of POTS, stuff like that, or what is POTS - even something as simple as that. Just a short little under 2-minute video just outlining it and I think that the visual aspect of it really helps.

00:12:58 Jill (Standing Up to POTS): Absolutely. So, coming back to the Spotlight Sunday initiative where people can volunteer to be highlighted on our social media posts, talking just a little bit about some of the aspects of their journeys - tell us a bit about what kinds of people have participated in that. Is it only teenagers, only people from the US? What are the people like?

00:13:26 Kate (Guest): Yeah, so we've had age ranges from 13 to 61 years old so far, and we've had people from all of the different states in the United States, Canada, the Netherlands, the United Kingdom. It's just - it's been so cool to be like - technology is really a blessing in all of this to be able to connect people from all different parts of the country and really the world with each other.

00:13:54 Jill (Standing Up to POTS): So, what are the most common first symptoms that people are writing in?

00:13:59 Kate (Guest): So, the most common first symptoms that I've seen are dizziness, fatigue, and fainting. But also, I didn't realize this, but they've also been listed as the most - the worst - symptoms.

00:14:12 Jill (Standing Up to POTS): Hmm, OK. what do people tend to say is the hardest thing about POTS?

00:14:18 Kate (Guest): It's always not knowing about ______. Like, not knowing if my symptoms are going to flare up the next day, or if I'm not going to be able to do this, or it's people not understanding. So I think that's the really important part. That's what we're trying to do at Standing Up to POTS, just to help increase awareness about it so people can understand what they're going through, and they can know what's happening.

00:14:44 Jill (Standing Up to POTS): What do people say most often about their favorite way to consume salt?

00:14:50 Kate (Guest): We get a lot of answers like salty snacks, like chips and Pickles. Some people salt their watermelon. They salt everything. There's many different ways that people do it, but we usually get the salty snacks.

00:15:04 Jill (Standing Up to POTS): What's the most popular answer for coping strategies?

00:15:10 Kate (Guest): A lot of people go to writing and listening to music, but one of the most common ones is just talking to others, just being able to say what you're feeling and have someone who can understand that. So we have, we've created support groups on Facebook so that people can just talk about it and really work through their feelings.

00:15:30 Jill (Standing Up to POTS): That's great, and it reminds me again that health problems have the suffering that you can attribute to the physical portion of it, but then there's also the suffering you can attribute to the social part of it. And it's so great that you're working to alleviate that while we raise money to fund research for the other stuff. So, what is the most popular answer that people write in for why they want to help raise awareness?

00:16:00 Kate (Guest): It's usually always to shorten the diagnosis time and so no one has to feel alone through this process. What you were saying earlier about just having people to talk to when my sister was diagnosed, we hadn't even heard of POTS. She was lucky and got diagnosed in under a year which, most people it takes a long time. In my surveys actually I've seen someone that it took 30 years for a diagnosis, which is just terrible. Yeah so, it's really nice that everyone wants to help each other and to be connected and to try to make the next diagnosis for someone else better, even if there's wasn't a good experience.

00:16:43 Jill (Standing Up to POTS): What is the most popular answer for what they wish more people knew about POTS?

00:16:50 Kate (Guest): That they look OK on the outside, but they're not OK on the inside. POTS is tricky because a lot of people haven't heard about it and that it’s invisible. You can't really see it on the outside. It's not something that people see and they're like, "Oh yeah, they're they're sick." So, people don't believe people when they have POTS. Doctors don't believe them. So it's really hard for POTS patients. I've heard a lot about it that they want to feel heard and they want to feel validated in their feelings that they have POTS and they're not OK.

00:17:24 Jill (Standing Up to POTS): Yeah, OK. And what is the most popular answer for what POTSs has taught people?

00:17:33 Kate (Guest): It's taught them to not take life for granted, to persevere through the bad times, be resilient. Someone actually said that they might not be strong physically due to POTS, but they found strength in other ways, which I think is really touching.

00:17:48 Jill (Standing Up to POTS): So, I'm going to flip it on you - do you feel like being involved with the whole POTS experience has taught you anything?

00:17:56 Kate (Guest): Yes, I've definitely learned a lot from it. Like I said before, I've learned a new perspective that I feel like you can't get from anywhere else. From the marketing point of view, I've learned communication, not only one on one with POTS patients, but also to a larger audience - our following on our social media platforms. And through that I've been able to adapt to analytics and I really learned that I wanted to go into marketing. I found my passion for that. I've also won a lot of scholarships because of the large service projects that I've done. And I've also won internships with marketing firms. So that's really helped me, and it'll help build my future. And I've been able to mess around with programs like Canva and Hootsuite and really get this truly unique experience that just happened out of this terrible thing, but we’re trying to turn it into a really positive thing.

00:18:57 Jill (Standing Up to POTS): Yeah, I just love your family for that so much. Well, you are awesome Kate. Thank you so much for all that you do to help spread the word about POTS, and to help create spaces for POTS patients to meet one another. We are very lucky to have you and all your skills on our team. Is there anything else you wanted to say about POTS or share with us?

00:19:30 Kate (Guest): I'd just like to say thank you for listening, for your time to really learn about POTS. It really means a lot that you guys are here with us, working on advocating for POTS and everyone.

00:19:45 Jill (Standing Up to POTS): Beautiful. Well, thank you Kate and thank you listeners. Remember none of this is medical advice. Consult your healthcare team about what's right for you, because we're all so different. But thank you for tuning in. Remember, you're not alone and please join us again.

00:20:08 Announcer: You can find us wherever you get your podcasts or on our website, www.standinguptopots.org/podcast and I would add, if you have any ideas or topics you'd like to suggest, send them in. You can also engage with us on social media at the handle @standinguptopots. Thanks for listening and we hope you join us. This show is a production of Standing Up to POTS. © 2021 Standing Up to POTS, Inc. All rights reserved.

Transcriber’s note: For a copy of this transcript or the transcript for any other episode of the POTScast, please send an email to volunteer@standinguptopots.org.