Episode 47 – POTS Diaries with John from FL

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.

00:30 Jill (Host): Hello fellow POTS patients and nice people who care about POTS patients. I'm Jill Brook, your lightheaded host, and today we have an episode of The POTS Diaries where we get to meet someone in the POTS community. This episode is special because it was inspired by a wonderfully moving email that we received here. We are changing names and identifying information because our guest wishes to remain anonymous, but I basically begged him to come on the show because I thought his story and his message was so moving. So, John thank you so much for the letter that you sent to us and for speaking with us today.

01:08 John (Guest): Thank you, Jill. I'm happy to be here and I'm glad you liked my email so much and invited me on. I'm glad to have the opportunity to tell my story and talk to all the wonderful POTS patients out there.

01:18 Jill (Host): So for starters, can you introduce yourself, as much as you want to and feel comfortable doing, with like some basics about your age, where you are in the country, who lives with you, your work, or any other basics that would help us kind of get a little quick image to start with.

01:35 John (Guest): Of course, yeah. So I'm John. I'm 26 years old and I live in Florida. I live over on the east coast, recently moved from the west coast, which is something I've wanted to do since I was very young. I had always wanted to move over to the Atlantic Ocean side and pursue a job in finance. Recently I opportunity to do that, which as you can imagine, being near the ocean with all the salty air, how wonderful that can be for someone who has POTS. I live with my girlfriend. We've been together for going on eight years now and she's really been my support system through all phases of life. She knew me before I got diagnosed, she knew me through the diagnosis, and since then she's been the single most important pillar of support that I've had in my life. So it's really been pretty crucial having her in my life and having someone who has been that bastion of understanding for me. As for my job, I work from home. I've worked from home for the past 2-3 years, which has been nice. I've been able to have jobs where I could do that. Right now I work in finance for a major aerospace corporation.

02:33 Jill (Host): I am excited to hear a little bit more about your girlfriend and I agree with you that sometimes having one person who understands you and supports you can just make all of the difference. But before we get there, I want to know what would your girlfriend say is your personality?

02:51 John (Guest): She would say that I'm really laid back and private. Like when I'm at home, that's going to be kind of quiet, kind of quirky. I've definitely got a lot of personality, it just - I have to feel comfortable for it to come out and for people to see who I really am. So she would probably say that was laid back, but I'd crack a joke every now and then. Pretty witty. I have a very large vocabulary 'cause I'm also a writer working on a fantasy novel series at the moment and some of the words you pick up from reading and writing just sort of slip into everyday speech. So, I've got a lot of idiosyncrasies that sort of make me, me, and my friends would probably say the same thing - Oh, you know, he's always saying the most darndest things. I think she would say that I'm pretty relaxed and can be anxious at times obviously with POTS, but in general, pretty easy to get along with, I think.

03:36 Jill (Host): So, from what we've heard about you so far, you sound extremely highly functional. You have gotten to move to your dream location, you are working for what sounds like a cool company in a great job. You are writing sci-fi fantasy series, not just a novel, but a series. You have a great girlfriend. Was it always this easy?

03:56 John (Guest): It was not, and a large part of the relative ease that I have now is just because of all the support systems I have. Before I knew what I had, before I got diagnosed, I was having the classic POTS symptoms. You know, the mysterious things that people try to track down. I was having fatigue. I couldn't stand for a very long time. I was an athlete and all of a sudden I wasn't able to exercise or do things as much as I was able to, and it wasn't because I wasn't strong, wasn't fit, it was because something was betraying me, and so until I had that support, everything was a struggle. Getting out of bed was a struggle when I was in university. It became difficult for me to go to class, to go shopping, to do all of these things, even after my girlfriend moved in - we moved in together - it was just hard to deal with. So it was just hard to do those sorts of things before I had all those support systems. Now that I have a better understanding of it, now it's a little bit easier to go about my normal day, and I would consider myself high functioning compared to most POTS patients, but it's still there.

04:59 Jill (Host): So, I have had the pleasure of getting to speak with you once before, so I kind of know a bit about your story and so that was a little bit of a tease 'cause I know that you've basically kind of been through hell and that you've worked really hard to get to where you are today. So, if we could kind of back up, can you give us a snapshot - almost like a snapshot from your childhood up until the point that something was noticeably wrong with your health?

05:26 John (Guest): Yeah, of course. So when I was younger, I was very outdoorsy. I would go out and play outside all the time as a child. I was very active in Scouts and baseball and all kinds of sports. I spent basically every day outside in the Florida heat and the humidity, and I was just really durable, really strong. And that continued throughout my adolescence and just being very fit, very active, never really had to question anything about my strength or my athleticism. In my later teens - around 15, 16 - I started having fatigue symptoms, started becoming more forgetful. I had always been a little bit forgetful - I think every adolescent is at some point or another - but for me it was definitely more noticeable after a while. So, lot of fatigue, a lot of forgetfulness. And, like I said, just standing up, waiting in line - it all became hard to do. And I was taking the city bus to school every day, one hour trip to school and a one hour trip back, and just that whole process of sitting on the city bus, sitting in the heat, it really got to me, and I was exhausted all the time and I thought it was just because of the situation I was in. But when I went to college, I really did notice that things were starting to hit harder, especially as I got back into playing baseball, got into the stress of living on your own and doing the normal college things. That's a pretty good synopsis of what happened. There was an incident that happened in my junior year. I was on a summer camp with Scouts summer camp and we were on a whitewater rafting trip, and my instructor flipped the raft in the middle of the second largest rapids east of the Mississippi River and I almost drowned. Ever since that incident, it was hard to get back into the water, yes, but I was also having the same symptoms I was having before - the fatigue, the forgetfulness, the rapid heart rate, and it was happening more and more. And it was just devastating my life and I didn't know what was going on. So, you can imagine how hard that is to struggle through and just to go through it, you know, after being so strong, decently strong, decently fit, all of a sudden they have all of that taken from me. It's really uncomfortable.

07:32 Jill (Host): Well, I was going to say, is it OK if I read a paragraph from your letter and ask you about it?

07:38 John (Guest): Absolutely.

07:39 Jill (Host): So, you say: “I first started having mild POTS symptoms as a teenager, most usually fatigue, brain fog, forgetfulness, and an inability to stand for very long despite being very fit and athletic. I often talked to my mother about it, but due to several unfortunate circumstances about her personal character, she was not supportive and expected me to ‘man up’ and get over myself, which only reinforced the toxic attitudes our society bears toward the male population, and by extension, me.” Do you mind sharing what that was like to be a teenager having these weird symptoms and going to your mom about it?

08:24 John (Guest): Absolutely. So one of the biggest challenges that I've had through my POTS journey is being a guy. I know it sounds funny, but when a man has an invisible disease, it's hard to admit that you don't have that strength, that you don't have that resilience that guys are expected to have. And, you know, when I look like I do, people expect me to be, “Oh, he’s strong. He looks like he could run a mile.” And so when I would go to my mother, when I first start having these manifestations of symptoms, she would just dismiss it, she would wave it away. She said, "Oh, it's just hormones. You're just being a teenager.” And then later on, when I was insisting that there was something there, it was, “You just gotta get over it, like, you gotta be a man. You're a teenager now, you're not a boy. You gotta learn how to get over the weakness and be strong 'cause other people are going to rely on you and you can't let them down.” So, there was always this constant pressure, this constant expectation that I had to be indestructible, strong, no weaknesses, no sort of failings, and any sort of indication that any of those were coming up, I got talked down to very strongly by my mother and a lot of my other family members just because it was something that they perceived to be not manly. I understand they were trying to bring the best out of me, but it was beyond my capacity, and there were a lot of pressures put on me that are very similar to the pressures that society places on men, where they're always expected to be the caregivers, the providers, the indestructible pillars of strength and support in the family. And as my symptoms came on, I wasn't able to do that as well. So not a whole lot of support from the family side. I always thought it was something that I would get over, especially since when we were doing the testing for the symptoms I was having, all of my tests were coming back normal. My blood work was normal, all the strength tests they had was normal, even when I was going through the actual POTS testing with my cardiologist who diagnosed me, I exceeded their fitness tests, like the stress EKG. I was the strongest person who ever stepped on that machine. So it's hard to have all that and to still feel this way and to be told, “Oh, it's anxiety, you'll get over it, or stress you need to man up, get over it.” I heard that all the time: “Be a man, get over it. You got to be strong,” and I physically could not. And that was very frustrating for me as an adolescent and as an early adult before I got diagnosed. Lot of frustration there.

10:44 Jill (Host): Yeah, I was gonna say at what age did that start being what you would hear?

10:51 John (Guest): It was around 15-16 and I had been basically the same body that I'm in now when I was 11 years old. I was very big for an 11, 12 year old. I was 5’10”, 130 pounds or something. So I was very big and strong from a very early age. But, you know, I was still a boy. Since I was the 2nd oldest of seven, by the time I was an adolescent I basically had to watch out for my siblings and I had to do a lot of the chores, lot of the housework, mow the lawn, do the dishes, that sort of thing, look after my brothers and sisters. So that's a lot of responsibility. So that really kicked in when I was around 14, 15, 16, just expected to take those leadership roles, especially since my dad traveled lot and I was the man of the house. So there was a lot of expectations put on me and when I couldn't deliver, that's that was hard to accept.

11:36 Jill (Host): So what did that do to your psyche and to your relationship with your mom?

11:42 John (Guest): It was really a challenge for me on my side because I was home schooled through 8th grade, and when I went to high school, that was my first time ever going to an actual school sitting somewhere 8 hours a day and having a lot of homework. And it was a college preparatory school, so the workload was massive. So, to go from an hour of school day to about 8 hours a day plus homework was a lot to deal with. And at the same time, I was having all this pressure from my mother to be more, to do more, to give up things that I did, pastimes, hobbies, to do those things was really quite damaging to me. And the whole time, the way that she talked about it and the pressures that were put on me made it seem like it was my fault. And that was really hard and devastating on my psyche. I did pull through it, but there were a lot of dark days for sure, and there still are from time to time regarding it, but that was really damaging for me. As for our relationship, it definitely had a negative impact, and although I forgave her for the things that I went through as a kid and we kind of made amends, we didn't explicitly but we communicated again when I was in college and everything, it was never really the same. It was always like, OK, just try to forgive and forget and move on, and it was really damaging, just doing all that. And then when I was going through the actual uptick of the symptoms that I had when I was twenty, that basically ruined it for good because she was convinced and still is that I don't have anything wrong with me, even though I've been diagnosed. There's just no support there, and now we're estranged. We don't talk at all. I think the last time I talked to her was about three years ago, so it's just it's something that broke and I never had that support, and I don't think I ever will really on that end.

13:20 Jill (Host): And to this day you say she doesn't believe that POTS is real, or she thinks that what a real man would suck it up and not be affected?

13:30 John (Guest): Combination of both, really. She has very high expectations for what guys should be and ought to do, and that really warps her perception of me, where, especially since the majority of people who get POTS are women, right? So, it's an invisible disease and she's like “Oh well, you have it,” she perceives it as weakness. When your own mother perceives you to be weak, just constantly, it's hard to have a relationship with someone who constantly sees you that way and sees it as a detriment to your character. But she doesn't see it as a weakness of the body, it's a weakness of my resolve - that I was always looking for attention that I was always looking for something to make the stress that I was going through, make it easier for me, which, I mean, it was, but it wasn't in a thoughtful sort of way. It was in a “you need to get over yourself and move on because right now you’re a failure.” It was just something that I had to deal with.

14:23 Jill (Host): You had mentioned your treadmill test and I thought that was interesting. I think you and I have a similar aspect of POTS that it seems like, from what I've heard from you, that we're the same, that we can be OK upright so long as our calves are pumping fast and helping the blood return upwards, but as soon as we are just standing around or moving slowly, we don't do too well upright. But on a treadmill test, I believe you had told me that because you were a big strapping athletic guy, they cranked up the incline all the way up so you're getting a maximal calf squeeze with every step. And on the treadmill test, you rocked it, right? And so it made you look like the fittest person in the world and what could possibly be wrong with you?

15:12 John (Guest): Right, yeah. That's basically how it went. They cranked the incline all the way up. They had me running, I think at 8 miles an hour. They were like, “This machine doesn't get any harder than this. This is the limits of the test,” and I was like I can keep doing this. And I am an athlete - when I workout and exercise, I don't really feel anything. I still play baseball right now and everything, and I can play like a 9-inning game and feel OK, but when I come home and I'm done exercising and I'd sit down all of a sudden, the POTS comes on and you're just exhausted. Your calves aren't squeezing. Your legs aren't doing the micro adjustments it does. I take my compression socks off and it's just - that's how my day ends. It's like you take the compression socks off and it's like you're not moving for the next day or whatever. But yeah, when I was being tested, maxxed out the machine, Doc took pictures of my heart, looked at everything 'cause initially we were concerned it was a cardiac issue, but he said that my heart was in basically perfect condition. I have the heart of an adolescent because of how well I've taken care of it and all the things I've done to help my cardiac health. And he said that there's no reason that I should be having the symptoms that I'm having, except for this one thing that it could be. And we did the Tilt Table test and discovered that I did have it. So, it's been really weird, being as strong as I am, being as fit as I am, and having this disability because it's weird to go to the grocery store and struggle to stand, but meanwhile, I'm lifting literally all the bags of groceries and it's not even a struggle for me. It's so easy to pick up all the bags of groceries at the store, but standing there holding them is making my body weak. It's the weirdest sensation, and it’s weird for people to look at, because you see me leaning over on the cart, sweating, panting, especially if those store doesn’t have good air conditioning, you know, heat intolerance, it's just it's too much for me. And people just don't understand that. I go to the store and I park in the disabled parking spot because I have a placard from my doctor and people see me get out and I get all sorts of looks. Not only am I a guy, but I look like I'm completely healthy. I look like an athlete. I look like I could run around the store, but that's just not the case. So that is a very difficult thing to reconcile as a guy, having a body that you have, and then having this thing that just - it betrays you, it really does.

17:24 Jill (Host): So, can I read another part from your letter that really struck me?

17:27 John (Guest): Absolutely.

17:28 Jill (Host): It says: “Men bear unique burden in our modern society. While it may be socially acceptable and perfectly reasonable for a woman to quit her job to focus on her mental and physical health, men are looked down upon if they're forced by their illness to do the same. “Though the proportion of females as the primary household breadwinners has increased in recent years, men are perceived as being lazy, unmotivated and a deadbeat if their female spouse earns more or all of the household income. This same gender disparity is seen all the more when it comes to POTS and other chronic illnesses. “A woman might be able to quit her job and not lose face, but a man would face scorn and derision. This applies all the more intensely for an invisible disability like POTS. Trying to explain debilitating pain and suffering while looking like a perfectly healthy male almost always arouses suspicion. “This societal double standard has severely impacted the mental and physical health of men, and many have either not sought treatment for their condition or have pushed through their diagnoses alone. “My own mental health has been on shaky ground since the onset of my symptoms, including a mental breakdown in the middle of my junior year in college that I endure mostly alone and unsupported while I grappled with what I now know to be runaway POTS episodes. “Although I am at peace with my condition now and able to tell people about it, the automatic societal perception that I am weak or attention-seeking will be a permanent, incurable detriment to my mental health. To this day, I struggle to reconcile that reality.” Oof! That hit me like a punch to the gut, and, you know, you seem so mentally healthy. When I talk to you, it seems like you have a great job and a great girlfriend and your dream home and everything, but it's still a struggle, mentally?

19:24 John (Guest): It really is, and there are a lot of things that I can point to in my life that have gone right, a lot of things that I've worked hard to make happen. When I was in college and I went through that mental breakdown I mentioned, one of the things that pulled me through was I had this dream - I had these things that I wanted in my life and I wasn't going to have them if I laid down and succumbed to whatever it was was going on. I developed a resolve to not give up because there were a lot of times along the way that I wanted to, before I knew I had my condition and certainly after, not really sure if I would get the things that I was pursuing. So that was really hard to go through, sitting really far away from where I wanted to be and feel it had my legs taken out from under me, kind of literally. So that was not really good for my mental health and not something that I wanted to go through. I put something together in terms of my psyche, yet, you know, after a mental breakdown you have to put yourself back together. I did see a counselor and I basically decided I have to put something together that's going to work. Someone who can function, someone who can make it through. There was going to be sad days, there was going to be very angry, frustrating days, bhat I had to keep going. That person that I built out of the ruins of that mental breakdown is the person I still am. In the quiet moments when I'm in the throes of my condition, in the suffering, in the symptoms, I still feel the cracks in the person that I built after, and it's something that I'm always going to have to work towards making better. And a large part of the cracks that are in that person is that there are insecurities. There are flaws. And there are things that I was not given, things that I was not supported in that I'm going to have to work on forever. And only by accepting those realities and I able to go on and endure. Obviously, moving and achieving my goals has helped tremendously, but nothing is ever going to erase the fact that I've had something taken from me. Nothing is ever going to erase the fact that people look at me different or people treat me different because of this thing that I have. And that's why when I become acquainted with someone, when I become friends with them, I explained to them I'm just a little bit slower. It may take me a little bit more to get out of bed in the morning. I may not be able to stay out as late as some people. I may not be able to walk around as much as some people. That's just the reality of what I'm like. And in general, I found people are pretty supportive. But when it actually comes time where people want to walk somewhere and it's like, “Guys, I'm I'm sorry I can't. I can't do that,” you can kind of see the disappointment on their face. Like, “What do you mean you can't do that?” And it's like, I just can't. That’s how it is. And they look at me and you know you can see those eyes go up and down and they're like, “Well, you look like you could do it.” And it's like, “Oh, I know, I look like I could do it. I look like I could do a lot of things, but here we are.” So that is definitely something that's hard to deal with. And every time that I have that experience where someone looks at me different when I tell somebody about my disease, whether it's a guy or a girl or anybody, they instantly give me like a sideways glance, you know, 'cause they say, “Oh you, you don't look disabled. You look normal, you talk normal.” It's like, yeah, this is the max of my abilities right now. I'm going to go home and have a two-day crash because I'm sitting here talking to you standing up. It's hard to deal with. It really is. Just dealing with the mental pressures.

22:34 Jill (Host): So, you mentioned that your girlfriend has been with you since before POTS came along, and so she obviously saw you before, sees you now, likes it all. What was that like with her? Was that hard for her to understand at first? Or how did that work out?

22:55 John (Guest): It was hard for her to understand, I think. We met in 2013 and we started dating shortly after that. I was having POTS symptoms, but it was something that I could control. I was very independent, very headstrong, very energetic, and I had a sense of invincibility about me where I felt I could do and say anything. And I was really exploring who I really was 'cause when you go to college, in those first couple of years, you really find out who you really are, 'cause you have the leftovers from what your parents and your high school like influences imparted on you, but then you break down and kind of see who the core you really are, and that was a person that she looked at and I think that she really liked. Obviously, we're still together. After the near drowning incident and I had that mental breakdown, a lot of the symptoms I was having - a lot of the anxious, nervousness, paranoia, fatigue, brain fog, all those things - she told me at one point, she said, “You weren't like this when we met,” and that was a real punch to the gut to me, especially since I didn't know what was wrong with me. So I didn't know how to take that. I didn't know how to feel about that. And she stuck with me. She supported me when times were hard and helped me get through it and then when she moved, she helped support me in whatever way she could, and she always encouraged me to go see the doctor for this and if they can't find what's wrong with you, go to another doctor and she's really the one who kept pushing me to do that. While I was going through that stage, she was still there. I mean, she was confused by it and rightfully, because I know there are a lot of people out there who struggled with anxiety and depression. She thought that my problems might have been psychosomatic, you know, it's brought about because I had the anxiety that I was having the POTS symptoms. She wasn't wrong for doing it. She was just trying to help me feel better and it was nice having that support when literally everything else was telling me, “You're fine,” you know. End of 2018, I ran a 10K. I did it, which was very difficult, and I still didn’t know what was wrong with me. I wasn't diagnosed yet, but I pinned my athleticism on doing that. I said if I am strong enough to do this race, I can do anything, and she supported me through all my training, supported me at my race. And after that happened, the way that I felt and recovered after that, I thought I was dying. I didn't tell her, but with all the symptoms I had, I literally thought I was going to die, 'cause when you look at those symptoms for POTS, you see all the scary things and I was like, “OK. Well, I'm going to try one more time to go to the doctor and I'm either going to find out what it is and fix it, or that's it.” I couldn't bring myself to tell her that, especially since she had supported me for so long, and then there for me when I needed. And when we found out diagnosis and did all the tests and she looked it up, she's like, “This explains everything.” And she kind of felt bad that she ever doubted any of my symptoms or anything. And you know, I told her she wasn't wrong for doing that ‘cause I would have said the same thing if it had been the other way around. But she was there for all of it, and she's still here. And she made me a whole bunch of salty drinks today and I don't think I would really have made it through without her, honestly. I know a lot of people don't always have that same support system, but if it wasn't for her, this journey would have been a lot harder. I don’t know if I would have made it all the way through it.

25:56 Jill (Host): You know, I have noticed in doing these interviews with patients that I never hear a success story of anyone who did it alone, and I hope those people are out there and I'd love to hear from them, but my sense is that people who have been successful in getting a good life back - maybe not the same life - but a good life generally had someone that helped them fight for their diagnosis and support them and believe in them. And I am just so grateful to all of those people who did that, 'cause I think you're right, I think that this is hard enough when you have supporters, and I cannot even imagine what it's like if you don't.

26:42 John (Guest): Yeah, I totally feel the same way. There are a lot of people out there, I know, who have POTS and don't even know it, really. I know there's a ton of people out there who are living undiagnosed and don't have those same support systems, and I know what it's like to not feel that way because I didn't have any from my family and my girlfriend was basically the only one who supported me 100%. Everyone else in my life has just kind of doubted or didn't understand, or didn't think it was real, and so I totally understand what that would feel like for someone going through it alone. I can imagine a large part of those people who don't have that support, I feel like most often would be males simply because they are always encouraged to push through diagnosis or weakness or anything. And when they don't have support that pushes them to figure out all the things that will help them, see all the doctors that they need to see, they just don't do it. They're like, “I don't want to spend money on this.” Every guy thinks that they're Superman and that's just kind of part of being a man. You know, you feel that way, and then society tells you you need to be that way. So it's hard to break both of those cycles, both of those expectations, and to really sit down and tear down your pride a little bit, sit down and say, “Hey. You just need to take it slow, look at yourself, and do what you gotta do. Because you're not going to be good for anyone if you let this condition eat you up. You know something’s wrong.” And if there's anything that I could tell any of the guys or girls out there who feel this way and aren't sure about it, and maybe they're even listening to this podcast because they're wondering if the things they’re feeling are synonymous with the things that are discussed here, listen to your body, you know. Don't listen to what everyone tells you. Don't let the doubt of other people, even other doctors, stop you from pursuing what you need to do to feel better. If it was that way, I would have never gotten my treatment and would have never gotten to a point where I was stable enough to have a normal life. It just eats at you.

28:32 Jill (Host): How have you been able to connect with other guys if you have? Have you found good online groups or what kind of support do you think is out there for the males?

28:45 John (Guest): There are a lot of online groups. The main thing that I did was I used Facebook for POTS support because there are POTS websites, including standinguptopots.org which is one of my favorite sites - a lot of good info on there - but for support and community I did stick to Facebook groups a lot. And there are large Facebook groups that have hundreds of thousands of people in them, it's very widespread disease, but there were smaller ones that were just for guys. And so I joined both of them. They both had good things to say. A large part of the male POTS support communities was basically just commiseration over what it's like to be a guy with POTS, whereas in the bigger groups they would discuss things like “What's your favorite drink, what's so good compression stocking?” The guys - we had a separate one just because we had things that were very guy focused because not all the advice that applies to female patients would apply to guy patients. Frankly, I don't know how POTS is affected when a woman has her time of the month, you know. That's just not something that applies to me. So not really understanding those hormone cycles and that gender variance, it's nice to have a community where you can just go to them and say “Hey, how does this affect you? How does this work for you?” There are even guys on there who are like construction workers, and they would go to work and they come back and they would be completely wiped and they say, “I can't move. Like, I had to call work the next day because I spent too long out in the sun.” And like, “Dang man, that sounds pretty awful.” That's where I found a lot of the solace for being a male with POTS is having that commiseration with other communities. Obviously it's a lot smaller, maybe 1000 or so - definitely not as big as the bigger ones - but it was definitely a good place to connect and share some of the frustrations that we had as guys, some of the tips and tricks that we had as guys, and some of the unique experiences that are just guy-centric. They're rare and it really helps you feel like you're not alone.

30:34 Jill (Host): Can I ask, before your had POTS - say when you were 14 years old, what was your definition of being a man and what is it now? Has POTS affected what that definition is, do you think?

30:47 John (Guest): It really has, and that perspective has changed a lot just by going to college, too. When I was younger, I was always told, especially since I was homeschooled I didn't really have that many friends and I didn't interact with like the world and stuff as much as I did when I was older. When I was growing up, I was second oldest of seven - I was the first-born male in my family - I was always told that you need to learn how to do this stuff because you're going to need to do it for your family. I would go with my dad on business trips to see, like, what he does, get into the rhythm of all that. I went on my first business trip with my dad when I was ten and I got to help him out with the things that he did, just see how my dad did things. And my family thought that was important because it's like, well this is what guys do. And while that's cool it's like I could be doing other things right now, you know, I don't know why I'm being taken through all these, you know, you need to learn this now. Because it was never expressed very much as a learning experience so much as a obligation, learning what you have to look forward to. So being a man was like doing the yard, doing chores, watching for the younger siblings, taking care of everybody, being the protector, the defender always being strong, always being masculine was a big thing. You could never do anything that was even remotely like what they considered feminine. Couldn't say things a certain way, couldn't talk a certain way, you always had to be uptight, always had to dress right. All of these things. So very high standards, especially when you're the oldest male. That's what it was like when I was around 14 back when the symptoms first started happening. Through high school and through college I was exposed to a lot more of the world and I saw a lot of different perspectives. And the more people that you talked to, the more that you realize that people have different viewpoints on life. They have different backgrounds, and I learned a lot that being a man is not so much doing all of the gender stereotypical things, it's being true to yourself and having strength where it counts, which is in your character, in your resolve, in your integrity, being a person of honor, and those are things that I think aren't really even gender stereotypes they're unisex. But that's what being a man to me became over time - it's just having those elements. And then, as I got diagnosed, certainly, and I felt my strength kind of betrayed by the nervous system problem that I have, I learned that it's not what you can physically do and what you can force yourself to do, push yourself to, it's being able to accept your weaknesses as much as you accept your strength and that's part of being true to yourself and being true to others. You have to be honest and you have to not let yourself be prideful, tell yourself that you can just push through it and go through every day just suffering, because it's like you gotta do what you have to do. And that's a big part of my life is just doing what you have to do. Not ignoring the weaknesses that you have but doing the best you can with what you have, controlling the things that are in your control. So that's really how it changed over time for me. It's not looking and talking and walking like a man, it's being a man at heart.

33:43 Jill (Host): So as I hear you say all this, it sounds like every mother's dream, right? Like, it makes me very sad that you are estranged from your mother over POTS and over gender stereotypes, because I have to imagine that she would be so proud to hear this. So, I'm going to ask a question, and I'm going to totally invite you to take a pass on, what would you love to either say to your mom or what would you love to hear from your mom about your health and what you have done with your life because of your health?

34:18 John (Guest): If there was anything that I could wish I could hear from her was just that she was proud of me and that I accomplished as much as I have, despite all the things that I've had. I understand that she has feelings about the prevalence and existence of mental illness, physical ailments, invisible diseases, and she also has very high expectations for what guys should and shouldn’t do. I understand that I don't tick a lot of those boxes and that there are elements of me that just don't line up with what she thinks I should be. If there was anything that I could wish that she would tell me is that she was proud of me because I worked very hard for what I have, worked very hard to overcome the challenges I had, worked very hard to overcome the pressures put on me by gender stereotypes and societal pressures and certainly even the household that I grew up in to become what I am today - a functional adult who is happy and has a good life. And as you said, you said it sounds like every mom’s dream to see one of their children succeed and I think, just despite all the odds, I think I am succeeding. And I wish that I could hear her tell that to me because I don't think she is. I don't think that she sees through my weaknesses and accepts them. I just wish that people were proud of me because it's hard to go on the way that I have.

35:36 Jill (Host): Well, when I hear what you've done, I'm super proud of you and I'm proud of actually one little detail that you mentioned to me the other day about how you founded a baseball team so that you could make baseball work for you. Do you mind sharing about what you did?

35:53 John (Guest): Yeah! So, I had always played baseball when I was younger. I played it from time I was about 9, and I had always had a great love for it. I pitched a lot obviously being as big and strong as I was. People always wanted me to pitch and hit and it was a lot of fun. When I was in college I kind of did whatever, but once I was out of college I founded a adult baseball league. And I rose through the ranks of that pretty fast - I was a player and then in a year they gave me a team and year after that they gave me an entire league. So now I'm in charge of a few dozen baseball players and we're getting a season together, but one of the first things that I did when I was a manager of my own team - this was shortly after I was diagnosed with POTS so this was my first time being an athlete with my condition - I developed a love for the catcher position because all throughout the rest of my baseball playing time I had been a pitcher, I've been an infielder - basically all the things really needed someone who was, you know, tall and lanky and had a good strong throwing arm. What I discovered when I was a manager of my own team was that I loved being a catcher because when I'm squatting down in the catcher position, I don't feel POTSie, whereas standing in the field or trying to pitch - you know, your heart’s race and your blood pumping and baseball is already kind of blood pumping inducing. So being able to squat in the catcher position take a break on my knees every now and then - it was definitely an interesting revelation to me. It's funny because I have the heat intolerance and everything, but there was one time that I caught 14 innings between two games. I would feel weird when I would stand up and do things, but as catcher you don't do that very often. I could squat back there and catch the ball, I could frame it, do whatever. Ironically, the only hard times I had at that position were if there was a ball hit in front of home plate, I'd have to stand up quickly, throw off my mask, and go run after it. But the problem is when you do that with POTS, you kind of black out. I think I only did that play successfully, like maybe once and the rest of the times I would basically get the ball and fall over. You can imagine the pitcher wasn't too amused just sitting there watching me fall over myself trying to pick up the ball, but I literally couldn't see it, so.... [Laughs]

37:54 Jill (Host): [Laughs] Well, I think that was a very clever move. So, great guy hack for POTS. Way to go! So I just have a couple more questions. Are there any silver linings at all to having POTS?

38:09 John (Guest): To having POTS, I think there is. It kind of forces you to slow things down a little bit. They do say that when you get out of bed in the morning that you are supposed to take it slow. You know, I know a lot of people who don't have POTS and they stand up they feel like their vision goes black or something and the doctors say it's because of low iron, but in general, everyone should take things a little bit easier. And I've always been an anxious person, you know, I had a very anxious childhood. I had struggled a lot through high school and college just to make ends meet. I was working three jobs at one time, so one thing that POTS is really forced me to do is to seek those quiet moments, to have those moments of self-reflection and just to take life at a different pace. I often think that if I didn't have POTS, but I still had all these systems of support and control, I think I'd be a very stress-free person just because of all the changes I've had to make just to make things better. So, I think if there's any silver lining to POTS is just the change of pace that there is, and also to find out where your real support systems are, who you can trust, who can lean on, and especially as a guy, it gives you the humility that you need. I think a lot of guys would probably struggle with is pride and POTS is a humbling thing. It's really a thing that brings you to your knees and forces you to accept that there are certain things that you cannot do, cannot control. So, I'm very thankful in that regard that I've had this journey, this experience. Obviously I wish I didn't have to keep going through it, I wish I could have learned these lessons without having had the condition, but that's not how life goes. So I'm grateful that I've had those opportunities with my condition.

39:40 Jill (Host): And my last question is, what is the best kind of support that friends, coworkers, family, anybody, could give you now?

39:50 John (Guest): I said it earlier - the best thing that I'd love to hear from my family right now is just that they're proud of me and they're happy for me and that they support me in what I'm doing nd the way that I'm feeling, and that they think that my condition is real and that they understand what I'm going through. It's very important, I think, for people who know someone with POTS to become educated on what they're feeling, what they're going through, especially since there's a lot of confusing information out there. There are a lot of sites that break it down in a way that most people can understand, and it only takes a few minutes of research to figure out the bare minimum of the struggle that people go through. You look at all the idiosyncrasies of POTS, all the weird quirks things that we have to go through, all the things that we feel, you know, my newest like the shortness of breath, the GI issues, just the basic suffering that we go through. And the more that people who know people with POTS can research on their own, the better that they can understand, and I think have patience for the person who's going through that - the POTS patient. If there's any word of advice I can give to someone who is a friend, relative, acquaintance, coworker of someone that they know who has POTS, I would definitely say just a little bit of research, little bit of education, because it makes a world of difference for that person just to understand - even at the surface level - the struggle that they go through every day. The how much energy a person has to have just to exist, things that we all take for granted. So that is one thing that I wish that I could tell people more often that they could do for me.

41:18 Jill (Host): Yeah, it's like a happiness arbitrage opportunity, right? Like 10 minutes of them Googling can make a POTS patient’s life and nervously easier and happier forevermore. I love that I love that idea.

41:31 John (Guest): More than they'll ever know, and even if they don't want to do the medical research, that's fine. Just be there for them. Tell them that you're proud of them because, I mean, it takes us three times the energy to get out of bed as a normal person. You can imagine how the rest of our life goes. Everything that we do is despite of POTS.

41:47 Jill (Host): Well, I can't wait to read your book someday and I'm so happy and grateful that you wrote us a letter and that you were willing to share your story today. I know it can't have been that easy, but I suspect it will help a lot of people to hear your story. So, thanks! And hey listeners, as always this is not medical advice. Talk to your health care team about what's right for you, and please consider subscribing because it helps us find more people like you. But thank you for listening. Remember that you're not alone, and please join us again soon.

42:25 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. © 2022 Standing Up to POTS. All rights reserved. [Transcriber’s note: If you would like a copy of this transcript or the transcript for any other episode of the POTScast, please send an email to volunteer@standinguptopots.org]