[00:00:00] 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 (Host): Hello fellow POTS patients and compassionate people who care about POTS patients. I'm Jill Brook, your horizontal 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 Mackenzie. Mackenzie, thank you so much for being here today.
[00:00:50] Mackenzie (Guest): Thank you so much for having me. Hello!
[00:00:53] Jill (Host): Hello! Okay, let's start with the basic info about you. Where are you? What is your age? Who do you live with? What is this dog that I hear about?
[00:01:03] Mackenzie (Guest): I am 20 years old. I just turned 20 in February. I am in Victoria, BC, which is in Canada. Currently I live with my mom, my grandma, and my brother, although I do live away at school sometimes in the [inaudible]. And my dog is Louie. He's a Jack Russell cross bichon.
[00:01:21] Jill (Host): Very nice. And you said you live in BC, tell us about that. That's famous for being such a neat place. Can you tell us about that?
[00:01:29] Mackenzie (Guest): Yeah, it's beautiful, although the weather is very bipolar. It can be rainy one moment, and then really sunny, and then super cold. There's a lot of neat and interesting places to explore. It's beautiful.
[00:01:43] Jill (Host): And you have like a lot of beautiful nature, right? Like old grove forests and like whales and stuff like off the coast?
[00:01:51] Mackenzie (Guest): And seals. Lots of seals. I just saw seals the other day. I can't remember where we... oh yeah, we were at the lagoon. We were bird watching and it's a great place to bird watch. There's a sanctuary by a lagoon, and we were just trying to watch the lunar eclipse and there were little seals.
[00:02:07] Jill (Host): Oh, very neat. Next question. How would your friends or family describe your personality?
[00:02:14] Mackenzie (Guest): Oh, probably very silly and bubbly. Probably passionate. I'm very passionate about like certain things, funny and probably lacking a filter sometimes.
[00:02:26] Jill (Host): [Laughs] I like that. Self-aware. Okay, so tell us more about those passions. What are some things you're passionate about?
[00:02:34] Mackenzie (Guest): Oh wow. I love, uh, musical theater. I've been in like 11 musicals and a handful of plays. I am obsessed with Greek mythology, like I have a bookcase full of books on ancient Greece and Greek mythology, Roman mythology. Every time I go into a bookstore, I'm like, "Do you have a mythology section?"
[00:02:57] Jill (Host): Neat. Okay, so tell us some of your favorite musicals in plays, or what have you been in?
[00:03:03] Mackenzie (Guest): Well, what have I been in?
[00:03:05] Jill (Host): Either one favorites or what you've been in.
[00:03:07] Mackenzie (Guest): Okay. I'll do favorites cause the ones I've been in are just kind of random. But my favorite is Dear Evan Hansen, and I also really love seeing Waitress on Broadway. I've seen a handful of Broadway shows. Phantom is a classic - Phantom of the Opera. Yeah, musical theater just makes my heart happy.
[00:03:25] Jill (Host): Ah, me too. That is so cool.
If we were to ask you to brag about yourself a little bit, what are some things that you're good at? It can be big things, small things, whatever.
[00:03:36] Mackenzie (Guest): I'd say I'm really good with kids and animals. I wanna be a teacher, so I've just have a natural way with kids, especially babies. The baby I'm currently nannying likes me more than his mom. His mom has said that, and I just love animals and nature, and I feel like I can create really good connections and bonds with animals. I feel like that's what I would be good at. I'm also creative.
[00:04:02] Jill (Host): Oh, tell us more about that.
[00:04:03] Mackenzie (Guest): Well, I like to make jewelry. It's a good way to like, I don't know, relax for me and kind of do some creativity and like matching beads. I love beading, my hands don't always like to stay still when I bead, 'cause I have shaky hands. It's so bad, but I love and like creating necklaces, creating different designs and stuff.
[00:04:25] Jill (Host): Oh, neat. Did you have a life before POTS showed up? And if so, can you give us a snapshot of what that looked like?
[00:04:34] Mackenzie (Guest): My POTS really showed up until maybe 14, 15. So I was very active, you know, hanging out with all my friends. I loved to talk, so I always chatting, hanging out with my friends. I love, I was, obviously, I was in musical theater, I did like theater productions at my school and outside of school.
I horseback rode. I was very passionate about judo and almost went to the junior Olympics before I got POTS, and I had Judo, soccer... I played soccer for a couple of years. Yeah, that was kinda like when my life was like.
[00:05:13] Jill (Host): So busy and active.
[00:05:15] Mackenzie (Guest): Yeah. And I played tuba. I mean, I think that's pretty cool. So I'll just like add that in there.
[00:05:20] Jill (Host): Cool. Yeah. So you must have been in shape, and I know just from the act of carrying the tuba back and forth.
[00:05:28] Mackenzie (Guest): Yeah. Those things are, they're heavy.
[00:05:31] Jill (Host): What was the first sign of POTS in your life?
[00:05:35] Mackenzie (Guest): Migraines and blacking out a little bit and really bad ear aches and like ringing of the ears was what originally got me to the doctor. And yeah, blacking out, really bad migraines that would last a couple weeks and just falling a lot more than usual. I'm naturally clumsy, but I just started falling over nothing.
[00:05:56] Jill (Host): Playing the tuba with POTS sounds hard. Was that an issue?
[00:06:00] Mackenzie (Guest): Yeah, a little bit, 'cause uh, after POTS got more difficult, I had to stop. But in the beginning when I didn't know that really anything was wrong with me, I just kinda would run out of breath. And I even remember one time my band room had like a little separate room. After rehearsal, I kind of just excused myself and went there and fainted.
[00:06:20] Jill (Host): Oh man. What was it like getting a POTS diagnosis? Was it quick and easy? Did it take a while? What happened?
[00:06:29] Mackenzie (Guest): [Laughs] Like everybody I know who's had POTS... I don't know anybody who has a quick and easy. If you do, congratulations.
[00:06:37] Jill (Host): I know, right?
[00:06:38] Mackenzie (Guest): Long and a painful process. And you know, I realize now it's very normal to go through people telling you, "Oh, it's in your head," or "you're just doing it for attention."
And then you kind of start to believe that yourself when enough people tell you. But there were also other diagnoses that were handed out doctors who didn't run tests, but were just kind of like, "Yeah, no, I think you have this." Or I started out getting referred to an ENT, which took 18 months to just get to the ear, nose, and throat doctor, and he took a look at my ears. He took a look at me and he was like, "Well, it's definitely on ear problem. You can get your ear hearing checked, but I think you need an MRI. I think you might have a brain tumor."
So, I went through...
[00:07:21] Jill (Host): Oh no.
[00:07:21] Mackenzie (Guest): ...getting an MRI and nothing really being there except for I have a little cyst. It doesn't do anything, but that's what they found in the MRI. And then I went, cardiologist, neurologist, I went, you know, through the doctor saying, "Oh, it's just in your head. You should see a psychiatrist." I feel like everybody goes through that at one point with POTS, like somebody telling you it's all in your head. I got that a lot. You know, sometimes you start to believe that. So it's emotionally and physically tiring trying to get a diagnosis.
Yeah. It took, I wanna say like maybe a little bit over two and a half years to get a diagnosis.
[00:08:00] Jill (Host): Wow. I know that when I was going through that, the part that wore me down the most was losing self-confidence, like believing that I must be making this up or conjuring it out of nothing and making it happen. But I always feel like, at least by the time I was going through that, I was a little bit older, I had been a little bit more accomplished. So I kind of like had some self-esteem banked up, and even still with that, it took it all away from me.
Like how is it being just 15 or a teenager and having that happen?
[00:08:34] Mackenzie (Guest): Honestly, it turns your life completely upside down, your sense of self because, you know, I got sick, I had to stop doing things. People thought I was maybe getting depressed, stopped hanging out with friends. It takes everything out of you and you, your, the self-doubt is a hundred percent there.
And even in a time where like, I didn't know who I was at 15, I'm still figuring out who I am at 20, but yeah, it does. It takes everything out of you 'cause you don't really know who you are. So then all the self-doubt comes in and everything you've built up just gets worn away and you know, you lose friends. My grades went down and I was somebody who really was focused on school. I had a lot of goals I wanted to achieve and yeah, it just kinda tore me down.
[00:09:22] Jill (Host): I've actually wondered if maybe that's one reason why everybody in this community seems so nice. They've been through this process of questioning themselves so much, and it's so humbling that like nobody's an arrogant jerk, [Laughs] and I didn't know if maybe that was like part of the reason why.
[00:09:41] Mackenzie (Guest): Well, I really hope I wasn't an arrogant jerk beforehand. Like, I saw this quote about chronic illness. It's like you don't get it until you get it, and it's totally true. If you were to ask my 14 year old self opinions or my views on life, they definitely have changed, compassion for other people going in any kind of situation. Just because they look fine doesn't mean they're actually fine. Definitely a big lesson that I've learned.
So yeah, I, I do think it maybe makes you just have a little bit more compassion and kindness toward others because that's what you wanna feel towards yourself.
[00:10:15] Jill (Host): Yeah. Okay, so you had all of these activities going and then you got POTS. Which of those activities did you have to lose to POTS? Did... did you have to give up some of them? Because I guess musical theater sounds like that would be tough on POTS. Tuba sounds tough on POTS. Did you lose some of those fun activities?
[00:10:34] Mackenzie (Guest): Yeah, I lost almost everything that I based my identity on. You know, I stuck through musical theater through my grade 11 year, but it was so tough and so painful, and that was just like midst diagnosis, so I didn't really a hundred percent understand pot. So, I did lose end up losing tuba.
So I quit soccer. I quit judo, which I think was one of the more upsetting ones because I was being trained by the head of Judo Canada to go into the junior BC Olympics. And that was really devastating because I had a lot of goals for myself, and I put a lot of effort and work into judo and horseback riding. I loved horseback riding. It was too much. I just couldn't do any of, you know, those kinds of activities, which on the bright side led me to, you know, reading more and doing jewelry and crocheting and knitting. So there's always a silver lining, but at the time it was very dark because everything that I based my identity on was gone.
[00:11:36] Jill (Host): Yeah. So good for you for finding all these new things. Once you had that diagnosis of POTS, did that enable you to find some things that helped very much?
[00:11:47] Mackenzie (Guest): At first, no, because I actually did try and do everything after diagnosis of POTS, but that crashed and burned as I know people who have POTS can imagine very fast.
And I think there was this time of just debilitating self pity, and that's not healthy now, I know, you know, I know that, and I knew that at the time. Even after I got my diagnosis with POTS and everything crashed and burned, I didn't really think there was anything beyond that in me. But you know, I didn't think there was anything more than musical theater and dancing and judo and all this stuff.
So in the beginning, no, but now a hundred percent. Like, I found a community of people. It's not just people with POTS, but with other chronic illnesses. I've learned a lot about other chronic illnesses through different communities. So yeah, now definitely having that diagnosis has led to new self identity.
[00:12:37] Jill (Host): That's excellent. Have your symptoms gotten much better now that you know what it is and presumably were able to try some things for it?
[00:12:46] Mackenzie (Guest): Unfortunately, no. I have periods where it is better than others, but it's still trying to manage uh, really at this point, any of the doctors in my area, all they really do is say, "Hey, have some salt, drink some water."
I'm still in the process of trying to find a doctor that will hear me, that will understand. I was at the BC Children's Hospital and there was a doctor in their dysautonomia department who told me that it was all in my head. I was like, "Oh, do you know what department you're in?" Like, fortunately, there were many really, really great doctors there who did understand and it was just the one.
But I'm still, you know, on that journey, trying to find stuff that works and trying to find, you know, now that I'm an adult, I can't, you know, go to the BC Children's anymore. It's still a process.
[00:13:43] Jill (Host): Yeah. What helps you the most? Does that salt and water do a lot for you or have you come up with tricks or strategies or habits that help?
[00:13:54] Mackenzie (Guest): Definitely the, the biggest trick is listening to your body and learning to be okay with resting, learning to be okay with asking for help, learning to be okay with, you know, sharing. I know I still feel a lot of shame from when I thought it was all in my head and then I was just asking for attention, so, sometimes, you know, sharing with employers or sharing with friends, different family members that you know, Hey, I'm actually sick and I need to rest. I'm not flaking out on you, I promise.
So just being okay with having those rest days, I think for me, has helped the most. Leg exercises, it sounds weird, but like putting my legs up on my headboard and letting the blood just rush down I find it really can help. Salt helps sometimes. I think mainly is just rest and not pushing myself to the point where I'm fainting.
[00:14:45] Jill (Host): Have you fainted very much and where have you fainted and what has that been like?
[00:14:50] Mackenzie (Guest): Yeah, off and on. I do faint. Like I said, in school, I would go into the back of the band room and faint. I have done that I think twice. Once was after a really hard band practice and the second time was after dance, and this was after the doctor said, you know, little exercises, that's okay, but like don't go running marathons or anything.
And then I'm like, "Yeah, no, I'm just gonna run a 5K and then do dance practice. It's all good." So, Late. I ran a 5K for clean water in Africa, and then I went straight to a six hour dance practice. I only made it through 35 minutes before I fainted and was sent home.
[00:15:32] Jill (Host): You haven't hurt yourself too badly?
[00:15:34] Mackenzie (Guest): Um, no, not, not too badly. Carpet burns, I think. Uh, maybe a sprained ankle here or there. Definitely a lot of carpet burns. I had an apartment in Nanaimo, and I tried living on my own, which meant, you know, there's nobody there to say, 'Hey, you look like you're not feeling well. You should sit down." And I'm just like, I can do it. I'll just, you know, do some vacuuming, studying, and I fell and burns all the time. Fainting and carpet burns.
Ohhhhh. Is the best help or support that people can give you these days?
I think understanding is the biggest thing. Yeah, just understanding, for me, is the nicest thing anybody can do really, 'cause there are a lot of people who don't understand. I am really lucky, my mom is a nurse and she's amazing. She's really is good at helping, taking care of me. So is my boyfriend who has literally done so much research on POTS. Before we started dating, I was like, "Hey, here's what I have," and he did lots of research and you know, he's there to help me and he understands. You know, under understanding and learning - I feel like that's another big thing is people can do.
[00:16:53] Jill (Host): That's so great.
[00:16:55] Mackenzie (Guest): Yeah, I'm really lucky 'cause, you know, a lot of my friends, you know, they care but they don't know or understand and I guess it's because I play it down. I'm like, "Yeah, no, it's fine. It's just a you know, just a little dysautonomia. I'm good. So I think that's part of it, but yeah, like seeing that there's more to the story and trying to learn more of the story is really helpful.
[00:17:16] Jill (Host): Yeah. That's so nice when people take the time to do that. What I've learned in talking to other POTS patients is it is amazing how rare it is to find somebody who really does take the time to learn about it and engage, and it's just so nice when someone does that.
[00:17:31] Mackenzie (Guest): Yeah, it's honestly the best feeling and I feel very lucky to have my mom who, you know, understands and my boyfriend who has taken the time to learn and just be there for me when I'm not feeling well and be like, "Hey, it's okay," 'cause I have to cancel plans 'cause, you know, POTS doesn't send you, uh, email saying, "Hey, heads up next week is gonna be a really bad flare up, you're not gonna wanna plan anything." You know, it just kinda happens and sometimes without any warning. I feel really bad about canceling plans, and so my boyfriend always reassures me like, "Hey, you know what? It's okay. We'll do it next time. The most important thing is that I get spend time with you and I'm spending time with you right now. "
[00:18:12] Jill (Host): Oh, yay. What a guy!
[00:18:14] Mackenzie (Guest): Yeah, right? He needs a medal.
[00:18:18] Jill (Host): Okay, so what kinds of activities are you able to do on those days then? Are you still able to hang out together and enjoy one another? And what kinds of stuff do you do when you have to cancel plans?
[00:18:28] Mackenzie (Guest): We like watching movies. He loves to take pictures of anything and everything, so sometimes he'll like come over and he'll take pictures of my jewelry. Most of the time watching movies or I'm trying to get him to read books with me, especially Greek mythology books. I'm trying, I love reading. That's something I do on days I'm not feeling well - read - but some days you're just so blah, that you can't do anything but just lay there and he'll just lay there with me, even if I have like a huge migraine, he won't even talk. He'll just hug me and gimme cuddles, which is sounds really cheesy.
[00:19:03] Jill (Host): Aww. Oh, that's so nice. That's great.
[00:19:06] Mackenzie (Guest): Talking is great too. Just like. Having a conversation. Sometimes when I don't feel well is when we have like the best and most random conversations, but like just talking is nice.
[00:19:17] Jill (Host): That's beautiful. Is there anything you know about POTS now that you wish you had known sooner?
[00:19:24] Mackenzie (Guest): The biggest thing is that there's a community out there and just because the people around you in your life before POTS don't know about it, doesn't mean there aren't other people out there. And I think the biggest thing was having that shame of, you know, isolation is the biggest thing that I suffered with in the first year or so. Yeah. So I wish if I could go back and tell my younger self something about POTS is just that there is a huge community of amazing, lovely people who go through similar things to you.
[00:19:53] Jill (Host): It's a lovely community. I don't know if every patient community is this lovely. I kind of doubt it. I feel like we have a good one.
[00:20:00] Mackenzie (Guest): I do too. I very much agree.
[00:20:02] Jill (Host): Next question, What lessons has POTS taught you, if any?
[00:20:07] Mackenzie (Guest): Kind of who my true friends are, really, who my true friends are, that it's okay to ask for help. I think the biggest thing for me is I like to be independent and I'm quite stubborn. I wanna do things myself. I don't want anybody else to know my, my business. Deep down, I, I want everything to be happy, friendly. I'm a people pleaser. I want everybody else to be okay and happy where I've learned and POTS has taught me that, Hey, take a break. Take a sec. You're okay. You can take care of yourself.
Take care of yourself. Let other people take care of you, 'cause it's unsustainable to just take care of everybody else all the time. You have to stop and take care of yourself, and I definitely don't think I did as much self care before I had POTS. So I think that's probably the biggest lesson. People care for you. Just let them care for you .
[00:20:54] Jill (Host): Yeah. That's so nice. I love that. Has anything positive come from your having POTS? Are there any silver linings?
[00:21:01] Mackenzie (Guest): Oh yeah, tons of silver linings. The community is a huge silver lining. Uh, lots of friends, lots of new people, new hobbies that I have that I didn't have before POTS you know, crocheting. I love to crochet and knit. I have like a small jewelry business that I didn't have before I had POTS. So I have that now. Taking more time to read and really learning who the important people in my life are, 'cause I had a lot of people in my life before that probably weren't the greatest for my mental health or you know, didn't have my wellbeing at heart.
And it kind of separated, you know, who actually, who are my true friends, who's giving back the energy that I'm giving, 'cause I love to give energy and just give, give, give. But you know, once I started not being able to give as much, I realized who was just feeding on my energy.
[00:21:54] Jill (Host): Yeah. So are you up for doing a speed round where you just say the first thing that comes to your mind?
[00:22:00] Mackenzie (Guest): Oh yeah. If you're okay with it. There's a lot up here. Yeah, I'm totally OK with it. [Laughs]
[00:22:08] Jill (Host): [Laughs] Perfect. Let it out. What is your favorite way to get salt?
[00:22:12] Mackenzie (Guest): Chips and french fries. A hundred percent.
[00:22:14] Jill (Host): What is the drink that you find the most hydrating?
[00:22:18] Mackenzie (Guest): Gatorade and just water or, or coconut water.
[00:22:21] Jill (Host): Ah, what is your favorite time of the day and why?
[00:22:26] Mackenzie (Guest): Morning-ish, like 10, 11 'cause I've had my salt, I've had my breakfast, I've had hopefully good night sleep and I'm like, just have a little bit of energy there.
[00:22:36] Jill (Host): Where is your favorite place to spend time and why?
[00:22:39] Mackenzie (Guest): Outdoors. I love the outdoors. It's refreshing and beautiful.
[00:22:44] Jill (Host): How many doctors have you seen for POTS?
[00:22:46] Mackenzie (Guest): At least five or six.
[00:22:48] Jill (Host): How many other POTS patients have you ever met in person in the flesh?
[00:22:54] Mackenzie (Guest): One. Two! Two.
[00:22:56] Jill (Host): What is one word that describes what it's like living with a chronic illness?
[00:23:02] Mackenzie (Guest): Interesting.
[00:23:03] Jill (Host): What is some good advice that anyone ever gave you?
[00:23:07] Mackenzie (Guest): It's okay not to be okay.
[00:23:09] Jill (Host): What is something small or inexpensive that brings you comfort or joy?
[00:23:15] Mackenzie (Guest): Squish mellows! I can't be the first person to say that. I love squish mellows.
[00:23:21] Jill (Host): Okay. You have to tell us what squish mellows are.
[00:23:23] Mackenzie (Guest): Okay. So squish mellows are basically just these round blobs of stuffies that they put animal faces on or other faces. Oh, here I have one right here. This is a camel.
[00:23:33] Jill (Host): Okay. Yep. She's holding up exactly what she said.
[00:23:35] Mackenzie (Guest): Yeah, a camel. And it's got like a little fuzzy patch. They're so cute. And they come with like little story cards. Story card has like their pronoun preferences, what they like to do when their birthdays. It's super cute.. It's getting more expensive as more people like them. I love it. It makes me so happy.
[00:23:55] Jill (Host): That's adorable. I can tell just from the way you're cradling it. [Laughs]
[00:23:58] Mackenzie (Guest): I have a huge one over there. I have too many.
[00:24:03] Jill (Host): That's adorable. Who is somebody that you admire?
[00:24:06] Mackenzie (Guest): My mom, like definitely. I admire my mom a lot. She takes care of, you know, everybody at work and she takes care of everybody here in my house, including me, so I definitely admire her.
[00:24:17] Jill (Host): Yeah. What is something that you are proud of?
[00:24:21] Mackenzie (Guest): How far I've come with being okay, and hopefully encouraging other young teens who went through the same thing I did. You know, I have a community on Instagram where I try and help and I learn from older people and people my age even sometimes I learn from younger people.
But, you know, just creating, I've created a community, so I'm pretty proud of that. Like a little one on my Instagram. So, yeah.
[00:24:45] Jill (Host): Oh, that's nice. Do you want to say what your Instagram is in case somebody listening wants to join or…Or is it public?
[00:24:52] Mackenzie (Guest): Totally public. My priority is to spend more time on it. It's called Talking About POTS and a talking underscore about underscore POTS [Transcriber’s note: @talking_about_POTS] if you want to join a small community, and I can create more group chats and stuff like that where people can just talk and share their story and meet friends.
[00:25:09] Jill (Host): Very cool. What is the toughest thing about POTS?
[00:25:13] Mackenzie (Guest): The toughest thing about POTS is, like I said before, you don't get it until you get it. You can have the most supportive people in the world and they can do all the research, but they won't understand unless they have it. And honestly, from the outside point of view, a lot of people look "normal". I'm doing air quotes.
So people assume things. I think that's the hardest. It's not as well known, and it's not as, you know, well read about or there's not a certain cure. So it, I think that's the hardest part.
[00:25:45] Jill (Host): Yeah. Do you have any tips to share of things that help you fall asleep?
[00:25:50] Mackenzie (Guest): Oh yes. I love warm bath, especially with like Epsom salts to relax your muscles. I don't know about anybody else, but like I get bad muscle spasms or just like random pains throughout my body. I call them by POTS pains. That, and like chamomile tea and reading before bed really helps settle me down and I try not to have too much sugar before bed because I feel like that makes my heart just go have those palpitations. So I think that's my advice for getting a good night's sleep.
[00:26:22] Jill (Host): Do you have any tips for things that give you energy?
[00:26:26] Mackenzie (Guest): Just trying to get outta bed, no matter how hard it is. Like, trust me, I know some days you, it's just impossible. You can't get outta bed. I use a cane sometimes. And even just using that cane, getting myself upstairs and just sitting up and eating food, even on a bad flareup day can usually give me a little bit of energy. But yeah, that's, that's what I do.
Gatorade, this is bad, but coffee I don't recommend. That does not help POTS at all [Laughs], but it does gimme some energy.
[00:27:00] Jill (Host): Almost finished. Can you finish this sentence? I love it when...
[00:27:06] Mackenzie (Guest): I love it when it's sunny and a good POTS day. Like there's no, like you have minimal symptoms.
[00:27:14] Jill (Host): I hate it when...
[00:27:16] Mackenzie (Guest): I can't do the things that I want because it's of POTS.
[00:27:21] Jill (Host): People might suspect I'm a POTSie when...
[00:27:25] Mackenzie (Guest): When I'm eating a giant thing of french fries walking around with my cane, my pink sparkly cane.
[00:27:32] Jill (Host): [Laughs] Oh, that sounds nice.
[00:27:33] Mackenzie (Guest): Yeah.
[00:27:34] Jill (Host): Okay. I just have a couple more questions. What do you wish more people knew about POTS?
[00:27:40] Mackenzie (Guest): I think I just wish more people knew about POTS and knew that it's really hard for people in the beginning and it is hard for people any stage, but it's really hard in the beginning when everybody around you is telling you that it's all in your head because there are minimal physical symptoms that you can just like look on the body. You know? It's not like a broken leg. It's, it's harder to tell. It's invisible. So I wish more people knew about it, and just because you look fine doesn't mean you're actually fine.
[00:28:09] Jill (Host): Yeah. Okay. Last question. Why did you agree to let us share your story today?
[00:28:15] Mackenzie (Guest): Because the other people who share their stories, it was really, really helpful. It's really, really good to know that you're not alone. Even if just like one person listens to this and is like, Hey, you know, she has some of the same symptoms as me or something, and I helped just like one person, that would be amazing. And I just wanna give back because the podcast has done a lot for me and the community has.
[00:28:38] Jill (Host): Oh, that's beautiful. Well, Mackenzie, thank you so much for sharing your story and all your insights with us. We really appreciate it and I know that everybody listening wishes you all the best.
[00:28:50] Mackenzie (Guest): Thank you. And you know, if anybody wants to reach out onto my POTS Instagram, I'm totally open to that. I love meeting people and I love making new friends.
[00:29:01] Jill (Host): Right on! All right, so hey listeners. I hope you enjoyed today's conversation. We'll be back next week. Until then, thank you for listening. Remember, you're not alone, and please join us again soon.
[00:29:16] Announcer: As a reminder, anything you hear on this podcast is not medical advice. Consult your healthcare team about what's right for you.
This show is a production of Standing Up to POTS, which is a 501(c)(3) non-profit organization. You can send us feedback or make a tax-deductible donation at www.StandingUptoPOTS.org. You can also engage with us on social media at the handle, @standinguptopots. If you like what you heard today, please consider subscribing to our podcast and sharing it with your friends and family. You can find us wherever you get your podcasts or at www.thepotscast.com. Thanks for listening.
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[Transcriber’s note: if you would like a copy of this transcript or the transcript for any episode of the POTScast, please send an email to [email protected]