The Dysunderstood Podcast

Season 2 Episode 4: James’s Story Transcript

 You know, when I was, before I got sick, it was like driving a nice BMW. Like, I, you know, I was young, I was fit, my body was like, did what I wanted it to do. And then, like, overnight, it was like the BMW broke down, it's in the garage, and they've given me, like, this replacement car, and it's like a very old, average, crappy, you know, 1992 Honda Civic with a wheel got fallen off, and all the warning lights are going on, I'm driving down the motorway, still trying to You know, do everything I need to do.

And you can't because it doesn't work like that. And it was just such a shift. Welcome to the disunderstood podcast. I'm your host, Ella Easton.

I'm so excited to introduce our next guest. He is our first male patient on the podcast. And as a background, James was a very fit and healthy individual who, in 2021, contracted a COVID 19 infection that unfortunately had a significant negative impact on his life. He went from exercising daily to becoming mostly bed bound.

Due to the debilitating effects of post COVID POTS and dysautonomia, James has searched far and wide to facilitate his recovery and has been fortunate to find some relief, improving to a point where he can manage a basic level of daily life. However, like many others, he continues on an undulating path of symptoms, experiencing periods of improvement that allow him to engage in part time work, followed by setbacks.

He's passionate about raising awareness of the broader impacts of POTS, not only on patients themselves, but also on their families and caregivers, whose lives have been considerably altered by this illness. James believes that more research is needed to find successful treatments that can help restore the lives of POTS patients, given that his condition has one of the lowest quality of life scores among all illnesses.

I thoroughly enjoyed this conversation and I'm really excited to share a male perspective of a patient of our community. I hope you enjoy. Yeah, so I guess what led me to like disunderstood in the wider dysautonomia community was obviously after my past diagnosis it's a very lonely world, right and Especially in Bermuda.

There is a handful of people here. Probably you have dysautonomia So like most people I kind of landed into the social media sphere and just started looking through Instagram and things like that for groups of people to try and just Make some, I guess, friends or peers and just better understand and really hopefully find some pages and people who had Especially from, like, the early days when I was in a very, very bad place to where I am now, I'm doing a bit better, like, I have to be very happy with the gains that I've made, but especially when you're lying in bed alone and you're like, Oh my God, I can't stand up without my heart rate hitting the, you know, stratosphere, you know, trying to find where you are and all this.

And I think through, you know, groups I just understood, but just in general people out there. Um, so that's what kind of led me to, you know, to, to your page and what you're doing. Um, but yeah, it's a backtrack on my, my diagnosis. So I'm a, uh, I guess a standard long COVID POTS patient. Um, I caught COVID in 20, well, so 2021, uh, I believe, um, I have to do the math on that.

Or maybe 2020. All usually a blur. And it was 2020 because COVID 19 came out in 2019, and then it was the whole of 2020. So it's December 2020, I caught COVID. Um, I traveled to the UK for Christmas, which was, you know, against recommendations and guidelines and a bit of family pressure there to do it. I was very, very much against it.

You know, even during the, you know, the first year of the pandemic, I was very, you know, know, mask wearing and being strict about all that because just, I didn't really want to get sick and maybe I had a sixth sense about it. Um, and, um, yeah, we went away, um, you know, to the UK. And, and unfortunately when we were there, uh, we called it and then the whole, my whole family called it.

Um, the thing I kind of joke about the irony is that I was by far, probably at the most fit and healthy in my family. Um, you know, I was on a pescatarian diet, I exercised probably seven days a week, I didn't drink alcohol. Um, so of all the people to end up with a long term chronic illness, it was probably me being the least likely.

Um, so, you know, unfortunate, but at the same time, I guess I wouldn't wish this on my family either. So it's a bit bittersweet. Um, yeah, so COVID was a bit rough for me, um, ended up in hospital, but they sent me out like, you're young, you're fit, nothing wrong with you, just being nervous, off you go. And that's because I was having tachycardia and all that kind of whatnot.

Um, you know, slowly got over COVID, things got a bit better. And, um, I went and sort of was able to play some, uh, uh, some golf and I noticed I wasn't doing quite right. I'm a bit dizzy. And then one day I woke up a couple weeks after I was tested negative, and weirdly enough, I ate a peanut butter and jam bagel, or jelly bagel, uh, and I was just sitting at my computer, and all of a sudden, I just had this wave come over me, and I just thought, like, oh my god, what the heck is going on here, heart rate was racing.

Super dizzy, ended up back in the hospital, they're like, you're being dramatic, uh, off you go, and I never felt the same since. Um, and it was weird because I had, that's a two week window from the virus and then the onset of this. That's where I felt somewhat normal. I wasn't quite right. But you know, I was on the way up.

I do think that I also had gone to the gym, I think the night before that and did an assault bike. I don't know if you know what an assault bike is, but it's like the arms and legs. I used to joke with like my Trainer, I was like, Oh, this thing's going to kill me one day. Uh, didn't kill me. We got pretty damn close.

Um, and, um, yeah, so, so I then was feeling so unwell, unable to work, you know, could barely get out of bed without, you know, feeling faint and the heart rate and I was just, what's, what's going on with my body? Everything was out of control. And, you know, I kind of explain it like, and even now, like, You know, when I was, before I got sick, it was like driving a nice BMW.

Like, I, you know, I was young, I was fit, my body was like, did what I wanted it to do. And then like overnight, it was like the BMW broke down, it's in the garage, and they've given me like this replacement car, and it's like a very old, average, crappy, you know, 1992 Honda Civic with a wheel got fallen off, and all the warning lights are going on, and I'm driving down the motorway, still trying to fix it.

You know, do everything I need to do, and you can't because it doesn't work like that, and it was just such a shift. Um, so I then, you know, obviously tried to seek out doctors and stuff here, and because my heart was racing, I ended up going to a cardiologist in Bermuda, and Bermuda's a very small, um, island, and it's 60, 000 people, so it's like a small town, but we did some okay, you know, medical facilities, but it's not anything like you get in the U.

S. Um, but I went to, um, a doctor there and he's a very, you know, good cardiologist and, um, straight away he did some tests and he diagnosed me with POTS. Wow. Um, so, you know, I'm not a typical story of someone who has years before they get their diagnosis. You know, it was, it was very instant. That said, he did say to me that his experience with POTS is that people get better within six months and not to worry about it.

Um, and, you know, you just take some propranolol, beta blocker, and, um, you know, hopefully I'll do better. And, you know, months go by, and nothing was happening, and I went back to him, and he was like, Look, this is outside of my expertise. So I ended up going to the Johns Hopkins, and that's where I did my first, um, Did I do a tilt table test there?

I can't remember. Uh, but it'd be a proper examinations and started to get a better understanding for dysautonomia. They tested me for the Mayo panel. They found some auto antibodies against the nervous system. I can't remember exactly what it was. Um, and, uh, yeah, that's kind of what sort of, I guess I'll pause there, but that's kind of what got me to my, my diagnosis.

So, um, I think maybe because COVID, um, Had been causing POTS and and whatnot. He was read about that So that's maybe why I was lucky enough to get diagnosed early on but whether or not it led me to a better Treatment plan is kind of if there's even a good treatment plan. Yeah. Yeah four years later and Unfortunately, we, we still don't have nearly as many answers as the patients are hoping.

No. Um, and actually the beginning of your illness sounds exactly like what happened to me. Um, and it's crazy when you, you say you go overnight from like, okay, I had this like sickness that I feel like I'm getting past. And you wake up one morning and it's like, you have this moment that you'll never forget.

Um, this moment of like someone turn the lights off on me or there's like a rush of something and it's like, I am not okay. And something you've never experienced before. And then it's like, after that moment, it's like, there's like a before and after that moment in your life. Um, that's a very changing. I always joke BC because it's before COVID, right?

Oh my God. I'm like my life DC, you know. Oh my god, I'm gonna have to use that. Wow, well, thank you so much for, for talking about that. Um, I have so many questions, but ever since then, what would you, how would you describe kind of the trajectory of your illness, um, over these last couple of years? So, After that initial diagnosis with POTS, you know, it was very much the standard thing, oh, you've got to do exercise and so on and so forth, and that's going to help you get better.

And I think I have POTS and ME, and I know they go hand in hand. Some people have one, the other, Um, but I definitely would meet the, I haven't been officially diagnosed with any, but like I need all the requirements for it. And, um, you know, I'd never exercised at all. It's been something that had helped me.

So I went on walks and this and that, and it was just causing triggers and flare ups. And it ended up basically putting myself into a bed bound state. Like, you know, I went from being okay functioning, and I just went down, down, down, down, down. And I was so tired. You know, in such a terrible place, the brain fog, and I couldn't think.

I was basically like a vegetable on the couch. My wife would come home and she's like, what do you do today? And like, I didn't do anything cause I could hardly even think myself, um, you know, off the sofa. And one of the scariest things for me was she bought a printer and she asked me to install a printer.

Which, I guess some people would be quite complicated, but for me, in a typical life, would have been relatively straightforward, and I was reading the instructions, and flipping through the page, trying to find the English page, and I got to the end, and it wasn't there, and I started again, and I could see in the corner, I could just about understand, it said EN for English, and I looked to the words, and I couldn't read.

I was like, this is gibberish, I don't know what any of this means, and I just sat on the floor and cried, because I was like, how can I not read, like, English, it's so It's such an obscure thing and then the people, you know, a lot of people probably don't believe that, but it, you know, it was, it was terrifying.

Um, anyway, so yeah, I was really not doing very well and I went to like the Johns Hopkins and they did the salt infusions or the saline and different things. You know, they talk about pacing and they try to do me on a gradual exercise program, which just, again, every time I did that, it caused flare ups.

So really, I just kind of had to step back and learn for myself, and essentially, over the past, you know, three, four years, it's been a slow progression upwards, but it's, it's, it's not, you know, not linear. It's just up, down, up, down snakes and ladders. Right. You know, um, and I'm fortunate enough that, you know, I am typically able to push myself a little bit and then get back to my baseline.

But like I always worry. That, one day that just won't happen. But, you know, from, you know, where I was bed bound, unable to read English and now I'm able to participate in some part time work and socialize and have multiple stimulus coming at me and not feel overwhelmed. And you know, yeah, I've made a lot of headway.

But, you know, compared to where I was, you know, I still can't, for any exercise I and go for some short walks on a flat surface.

Trying to relish the fact that, you know, cognitively, that has improved so much, and mentally I'm a lot closer to who I was, um, than the early days, but yeah, so, yeah, it's definitely been a slow trajectory up, but with plenty of setbacks along the way, right? Yeah, definitely. Never linear. And I, I mean, I had my moments of like, am I ever gonna be myself again?

And I know that it's like, It's very scary. In addition to

there's so many emotions that that you experience, um, with each of the different symptoms that you have. Um, and I can't imagine, um, going through what what you went through. Um, what are some of the other maybe notable experiences that you had kind of along the way that either gave you a little bit of hope for continuing to slowly, um, direction or, um, other things that you can remember that maybe felt like setbacks?

Yeah. So, um, I was very fortunate. There's a young, young girl in Bermuda, um, who has POTS and she got, um, I'm diagnosed with POTS, uh, after another virus. This is all well before COVID. And it just so happens that her mom worked with my uncle and they got us in contact. And, um, she really was like a huge inspiration for me.

Um, hearing her story and hearing what she'd gone through and And to where she, she got into, and even now we still continue to talk, you know, pretty regularly and she's continuing to make headway and make improvements. Um, but yeah, getting, um, you know, speaking with her was a huge thing because it's relatable.

It's like, okay, there's somebody in Bermuda, my, you know, where I'm from, my home country, and, and someone who, you know, a family friend knows. A friend of a family and, um, you know, so she was a huge inspiration for me and, um, uh, yeah, I'll be ever ever grateful for like just her guidance and just cheery attitude.

And she's still an inspiration to me. Um, and then, you know, outside of that, I also got to meet a few other long coded, uh, people, um, who, you know, go through the same thing and, and interestingly enough, a friend of my, um, uh, of my wife from Canada, her partner, Also has long COVID and parts and getting to speak with him about it and just suddenly building a little community around me of people that had gone through or going through something similar.

But that's it. We all are different, right? None of us have exactly the same story because it's so unique. But those are really things that, like, stand out to me. It's just the people that I've met along the way. And I stand by the fact that I don't think long COVID or PODS impacts evil people. Like, everyone I've met has been so nice and so welcoming and open and sharing, um, You know, which is kind of the irony.

Sorry. Maisie, come here. Maisie, come here. Sorry, she's going to have to No, don't worry at all. Come on. Come here. She can join. You're going to have to join. Yes. You're scratching at the doors. People are out there and she wants to say hello. Aww. Alright, here you go. Oh my gosh, how cute! So yes, you're going to have to be on the podcast, everybody.

I love it. We both have curly hair. Yeah. Um, Sorry, I kind of lost my train of thought there. Oh, you were saying that COVID doesn't, um, or long COVID doesn't affect evil people. I mean, I'm sure there are people out there that are not very nice. Yeah. I haven't met them yet. And, uh, you know, or maybe it's a humbling experience.

I don't, I don't know. Um, but everyone I've met has been, and that's really been the saving grace for all this experience. And then, uh, to be honest with you, this little creature here. She came around as, you know, part of my long COVID recovery. And yeah, I mean, she's been the best thing that's happened to me.

Um, and I met a few good doctors along the way, um, which is, I know, rare for some people, um, but I've had a good, you know, support network of people who wanted to kind of go to bat for me with things like my disability application and, and, and so on and so forth. Um, so yeah, it's, Yeah, and, and, and I guess ultimately as well as like having family support, um, and I think that's something that isn't spoken a lot about is, you know, the impact of chronic illnesses like this on, on your family and your loved ones, right?

Like it's, it's, it's awful. I mean, especially in the early days, I felt almost like, and this may sound a bit dramatic, but I felt almost like, you know, I died. And I was just a ghost, right? I couldn't do anything. I was just sitting on a couch where I'd, you know, I could hardly function, but I was there. My family could see me.

They could, you know, and I was haunting them, but I wasn't able to interact or do anything with them. I couldn't go out. I couldn't go for walks. I couldn't go for a dinner. I couldn't do anything. I was, so it was a weird way to explain it, but I felt almost like I was just haunting them by still being alive.

Where early on you're like, God, I wish, I wish I just had gone, you know, I can't live a life like this. This is no life to live. You know, obviously that's changed a lot now, but you know, it's a very scary thing. But you know, my family had been such a support network, and my wife, and my friends, and I think being from a small community like Bermuda.

You know, it's, it's, that's really been what's helped me along the way, even, even yesterday I was at an event for my wife's work and, and two people who I hadn't seen for a very long time, like, oh, we saw you on the news. I did, I did a whole thing on the news about long COVID during the sort of peak of the pandemic and, um, you know, that's so great that you did that.

And it's just little bits like that, that, yeah. make you realize that like my suffering wasn't in vain. Like, you know, it was to try and, I don't know. I don't know. It's hard to explain. Yeah. Sorry. You've just been annoying now. Okay, Dan, you go. Well, you opening up about your experience is undoubtedly going to help someone else.

Um, and I, that was a very, um, I feel like profound way to describe the feeling of like almost Feeling like a burden to the people around you. And it's like, you know that they love you and they want to take care of you and support you. And they know the person that you are and they know that, I mean, I don't want to speak for them, but they know that you're so capable of so many things and Um, you know, going from this high achieving athletic, you know, person overnight to someone completely different, um, I feel like the, what I've heard from families is like, I know this is not, you know, my person, like something, something really is wrong.

And did your family members kind of have those moments or your loved ones? I mean, I think they all put on a brave face for me, but I know that it was causing an extreme amount of stress to my parents and my wife and, um, even, and my, my close friends and aunts and uncles, like, yeah, I mean, you know, luckily or unluckily my uncle has ME.

Um, so, um, my family were familiar with the illness, um, but it was a, you know, huge shock to them when they obviously, they basically saw what was going on with me and I was like, oh my gosh, it's all happening again. Especially for my father, because my uncle got, um, ME after a bout of mono back when he was in his 20s.

Um, so he lived in for 40 plus years with it. Um, so I think, yeah, certainly, you know, my dad's very stoic, so he wouldn't ever express it to me, but I know, um, that, yeah, it definitely had a very hard impact on, on all of them. Um, And, uh, yeah, it's, and it was tough because they, you know, I want to please them and make, you know, make them be proud of me and all this whatnot.

And, you know, you think that, you know, your old, my old life, BC, um, is, uh, you know, was I wanted to get a good job and, uh, you know, do well and do all these things. And then, you know, you realize that actually, you know, those aren't so much the things that, If your family doesn't want you to be happy and healthy and, um, you know, I wasn't, I wasn't happy.

I wasn't healthy. And, and, you know, I was in a very dark place at times and, you know, you lean on them and it's not fair. Uh, but you know, unfortunately we just kind of, you know, we all get, we all get thrown into this and it's, it's not just me, as I've always said, it's not just me, it's, it feels so different.

It's, you know, it's a very selfish illness in the fact that it impacts, you know, you, but it brings everyone else along with you. All of a sudden, my wife has to become a carer, plus, you know, her full time job. All of a sudden, my parents have to start caring for me when they're looking to go into retirement.

You know, all these things you don't expect, and then, you know, I feel like, oh my gosh, I'm, A burden to them and you know, of course, I'm not and you know, you don't want to be that like you go from being super independent to, um, and even now, like I'm obviously a lot more independent, but like I still have to rely on people far more than I would like.

Yeah. Um, and it's just hard. It's mentally, it's hard on you. You're already going through so much, like dealing with your health is going out the window. And then the added pressure of this sort of feeling that, you know, you're letting people around you down and no one really understands it, as you said, disunderstood, right?

Like, that's the hardest thing is no one, unless you go through this or, or have experienced it, it's so hard to explain to people what this feels like. You know, the way I explain it is like, imagine flying to, you know, Hong Kong. You know, drinking a bottle of vodka on the way and not sleeping for three days before and then getting there and that's how you sort of, that's how you feel, you know, plus everything else, like your body's not working properly, like, you know, it's and it's like a hangover plus jet lag.

And it's like, there's different levels to it. Um, but yeah, it's, it's that whole feeling of people not really understanding it. And then you feel so alone and all in at all. Yeah. Well, I'm so glad you were able to find those people that you spoke about that were a source of support and inspiration to you because I think that it's really the one of the only things often we feel like we can hold on to because, you know, the, the treatment plan isn't necessarily there yet.

Um, there's not like a good, um, estimate for prognosis in terms of like, how long are people going to be experiencing this and every single person is different. And so, um, the stability of the support system, I think, as you mentioned, has, has gone a long way and I'm glad you're able to find that. But like you said, it's like people forget that the caregivers are also, um, are also just as deep within the trenches and they're kind of the unsung heroes of so many of these stories.

Um, Well, I don't think the statistics pick it up, right? It's always, Oh, there's X million people with long COVID. And that's great. I mean, it's great that the statistics are there to demonstrate that and the numbers are outrageously high, and it's extremely upsetting. But for each one of those people, there's a partner, a child, a parent, aunt, uncle, whoever it is, that's now multiple people whose lives have been impacted by it.

And I mean, I joke now, I always say it's funny. I'm starting to interact with people in the wild, as it were, like in day to day everyday life who have long COVID or know people who have long COVID. Like my aunt was just in a holiday in like Barbados. Um, and she was on a trip somewhere with, and then they're like, Oh yes, our, you know, friend has long COVID and it's just kind of, it's amazing now how common it is, but yet seemingly so little is being done by the powers that be.

Yeah. And it's just so confusing. I didn't think I'd be sitting here four years down the road with literally like a handful of serious medical studies going on, and even then there's still questions going on about whether or not this is a real illness or a real diagnosis, you know? Yeah. It's just, it's baffling to me that, you know, that's even being spoken about.

You know, just get me on a tilt table and you'll see what goes on with my body. Like the fact that I received 30 percent less blood to my brain when I'm upright should be evidence enough that this is not psychological. Yeah. I can't control that. Like I can't like, it's like, you know, I just really want blood to go to my left hand now.

Like if I had that superpower, like, you know, but anyway. Yeah. Yeah. The, the evidence is there. Um, Dr. Peter Rowe, who I've had on the podcast and is someone that I. Um, deeply respect and hope to be like one day as a doctor, he always says it's like there are findings if you know what to look for. Um, and I think a huge next step in getting things moving faster in the right direction is the education of providers to be able to know, you know, if someone's presenting with fatigue, it's not just anxiety and depression.

Um, there are other things that you can look for that may tell you, you know, this is something going on. That's not, not just up here. Um, yeah. Yeah. And it's very, very upsetting. Yeah. And I mean, you, you touched on earlier, right, this illness is what, 90 percent female, right? And there's no doubt in my mind that if it's a 90 percent male illness, we'd be a lot further down the pipeline than we are now.

And, uh, it's, you know, it's extremely frustrating and you go back into the history of the illness and hysteria and everything else and it's just mind blowing that that's how, you know, women have been treated. And when it comes to. Um, you know, medicine, and it's not just this illness, it's across so many different parts of medicine.

And, you know, you can really go down the rabbit hole, as it were, and, um, it's just extremely disappointing. And, you know, again, nobody gets woken up to these things until it happens to you, but like, gosh, I wish I had known more about this prior to, because I think I would have, I'd like to think I would have done more advocacy or, I don't know what I would have done, but, you know, it's just, it's, It's a hard lesson to have, but it's so frustrating and I can't imagine how some of these, you know, my female counterparts who took years to get diagnosed, you know, and I do question sometimes, like, was it because I was a male that I got diagnosed so much more quickly?

Or was it just timing to the COVID? I had met the right doctor? I don't know, but. I mean, I still get gas, but I mean, Christ, I was told by a cardiologist recently that I said that parts of the disabling condition, and he said to me, don't be dramatic. And I said, I know people who have parts who are in wheelchairs.

How is that not disabling? And he was like, scoffed at me. So, you know, I still, you know, I still get a lot of the same, but Ultimately, it's just so unfathomably frustrating that, you know, this is the society that we live in in today's world. Yeah, I know. And I think there's maybe this assumption that like, just because this number of women are not working, it's maybe a choice or, you know, it's like they want to stay home or making it out to maybe be not as much of a, um, of a problem as, as it really is.

Um, yeah. And on the note of Employment and, um, you know, being able to, to have a job, um, hold a job and, um, feel confident that, you know, you're able to hold a job. Um, I would love to hear your experience with your employment and, um, maybe also a little bit about your experience with, um, applying for disability, because that's something that we kind of chatted about earlier.

Yeah. So, um, I was employed while I got COVID initially. My employer was, you know, initially very supportive of that and, and, you know, understanding. Um, but, you know, like a lot of people and, and, uh, in my, you know, my circle, um, it's hard to understand, right? Um, I applied for disability. Um, I unfortunately was denied disability.

I appealed it and was continually denied. Uh, it was a really awful and stressful process, and especially in the time when I most needed it, when I was really, really unable to do anything, um, it wasn't there. The way I've explained disability to everybody is I viewed it as a parachute. I'd been pushed out of an airplane, and I was pulling on my parachute.

And I want it to open, and then I can use it to navigate, to find a nice place to land, take it off, and then carry on with my life. I never wanted to be on disability for the rest of my life. I'm just, it's just, unless I couldn't. That's basically, that was it. I was bedbound and, you know, but I was always hopeful that I would make improvements and be able to try and get on with my life.

And I felt for the first two, three years, you know, when I was going through this process, I was just tugging on it to open and it just wouldn't open. I was just tumbling and tumbling and tumbling. And I was, I needed the support. I had no income. Um, luckily my wife works and she's very successful. So, you know, I had that to lean on, but, you know, it was putting a lot of pressure on our relationship and, you know, off, off, on everything.

And, uh, And, um, you know, I had all my doctor's notes from the U. S. and the U. K., from Bermuda, and they were all vouching for me, saying that James is disabled and he meets the requirements. And the insurance company kept on coming back and saying no. And, um, then I appealed, and they continued to say no. They literally got, like, seemingly a doctor that had no experience in POTS, certainly wasn't a neurologist, uh, to do the review.

And it was, it was awful, really awful. And, you know, quite frankly, I feel I was denied illegitimately. Um, you know, and then they even, uh, I then went back and asked if I could have a, um, an appointment with one of their doctors in person, uh, which they then accepted, found somebody in a very obscure part of the U.

S., which is very hard for me to get to. Travel still remains hard for me. Um, and I was like, I'm in Bermuda. Actually, in fact, I think I was actually in Boston trying to get onto a trial at the time, so I was already otherwise engaged on something. And then they came back and said, oh, he's being obtrusive, um, you cast, um, you know, you're not, you're going to get denied because of that.

And I was like, what, just because I couldn't make it to the one appointment that you gave me that I asked for. And then essentially my only option of recourse after that was to sue them in a court in the U. S. And I live in Bermuda. I don't know how to do that. And fortunately for me, I've been on low dose Naltrexone for a little while now.

That seems to be something that's tilted the needle. And I'm getting to a point where I'm able to participate in some part time employment and, you know, enough so to essentially support myself. And that's only really happened in the past couple months. Right. I did not feel comfortable to do that. Um, and, um, you know, I can talk more about that.

Uh, but yeah, I mean, it was, it was extremely, extremely disappointing, extremely stressful. And you're going on, on that, doing all that on top of the fact that you've no health, I'm trying to find ways to recover, trying to get onto experimental trials. And then I went to Germany to do some like blood washing, aphoresis thing, I've done all sorts of different drugs and, you know, like I'm desperate to get my health back.

And then to go through all this, something that you pay for, a product that you pay for that you think is going to be a lifeline when you most need it. To then basically be told, be accused of faking it and lying despite your doctors going to bat and saying, no, this is, this is real. And this is doctors from Brigham and Women, London Bridge Hospital, Johns Hopkins, like top, top institutions and top, top doctors in the space.

And the insurance company still just said no. And yes, now, like obviously I wouldn't pass because I can do some part time work and that's fine, but for two years there, I needed it. And look, I'd be happy. Like I would have been off it by now. It wasn't like I was going to, you know, anyway, I mean, the worst part is I'm in the insurance industry historically and everyone always, you know, have to go at you because they're like, Oh, insurance, you're just assholes.

Kind of like, Oh shit. Sorry. I don't know if I can swear or not, but I'm like, maybe they're right, you know? Um, So anyway, very disappointing, um, for me to go through that process. Um, so, um, you know, then obviously, you know, I left my, my, my previous employer because, you know, it'd been years had gone by and, and, um, well, I'd left before then, but you know, um, I was not able to work for them.

Um, and, um, I didn't feel like I could do any work at all, to be honest with you during those early stages. Yeah, the only reason they have a kind of turn that corner where I'm able to do some, um, and I'm very fortunate now that, um, I've, you know, found people who are willing to, well, they see value in who I am, and they're willing to accommodate that and work with me around that.

It's funny because you, you really feel so worthless and you go from being, you know, you know, on a good career trajectory, quite successful and all of a sudden you don't have any confidence in yourself and your ability. And there's been a few people along the way that have just come out of nowhere and they've just, they see me and they see that I, I still bring value and they've done wonders in helping my confidence get up and, and, you know, help me, you know, get back into doing something and, and on top of all that, just supporting me with it and, you know, allowing me to be flexible and take, you know, to have the right accommodations, like, Jordan Meen.

You know, um, my, my friend, he bought me like a chair, it's like a nap in the office, you know? Um, it's things like that. And it's, you know, so it's, it's, it's really, I don't know, just encouraging that there's people out there in my life that, you know, see me and they say, okay, yeah, you're, you are disabled.

You've got this condition. But we still think that you have a good brain and, and, you know, bring value to the table. Um, and it's something that, you know, I didn't expect. It came out of nowhere and I'm extremely grateful for it. Um, but you know, I appreciate that I live in a small community and, and that's probably a benefit to it.

And a lot of people out there probably won't be presented with the type of Opportunities that I have, but at the same time like you kind of have to ask, I guess. I don't know. I don't know. And things kind of worked out. Um, and the nice thing about it is like it's kind of all under my, in my control now, like everything that I'm doing is like, okay.

I've gone out and super transparent and I've said, these are the things, this is who I am, these are my conditions and these are my limitations. And it's almost freeing because then it's like, okay, now they know, they noticed like it can't be disappointed if I, you know, it's, it's a very different dynamic to be going into something so vulnerable and transparent on.

Um, but yeah, I appreciate it. I'm very fortunate that I have the opportunities with the people that I have the opportunities with. Yeah, that makes sense definitely and you know, it's really hard to Come forward and It feels like you're almost admitting Like something but you can't control it about yourself and it's like, oh I have this thing And I need you to know about it.

Um, and it's a balance of like I don't want people to not trust me from the get go or not feel like I'm not I have the potential to do really great work, but it's more of like a warning just in case. So it's a, it's a, it's a really fine line of communication. Yeah, it really is. And it's, uh, I mean, you know, you get so nervous, right?

Because then, um, but yeah, I mean, look, I, there's no way on earth I could work in a traditional workplace, like, you know, just, I mean, I think it's amazing if, you know, you're studying to be a doctor and you plan to go into that, you know, Um, field, you know, the workload and everything, like, I think it's amazing that you can, you know, that that's like on the, you're on the horizon for you in theory and, uh, um, well, hopefully not in theory, in reality.

Hopefully in reality. Yeah. Not just in the theory of my mind. Yeah. No, but like, you know, I think it's amazing that you're, you know, you're doing that. Like, yeah, I'm, I'm not, unfortunately at a point where I could, you know, like I, you know, it's just not conceivable for me. Yeah. And, um, But, yeah, it's, I feel so lucky, but, you know, at the same time just so disappointed with the way things worked out with disability, and I, and I can't imagine, I mean, I ended up hiring a lawyer to try help and everything, and I, you know, I feel for people that, you know, didn't have the resources and support that I had to try and get it, they would have probably just had the first hurdle being rejected and not gone any further.

Um, you know, obviously hindsight, I wish I'd done that because of the emotional burden and stress that it caused me having to try and get this and, and, you know, financial stress and strain of trying to not have an income, trying to cover my legal fees to fight for what I thought I was, you know, owed or due.

You know, um, and at the same time, all not knowing what the future held and that was really it like I didn't know that I would, you know, make improvements to the point where, okay, look, I can, I can now do a couple hours a day. It's hard to see. Yeah, you don't know. It's hard to see, yeah. You have no idea.

You, you, I feel like most people kind of accept the fact that they, they have to, in order to cope in the present, while you're managing all of that, you have to try to accept that this may be your life experience and adapt. Yeah, yeah. No, I, I agree. But yeah, well done now. Yeah. I mean, thanks for opening up about that.

I think that's a conversation that, um, isn't had regularly enough. And, um, I was speaking to someone, um, on the podcast recently, um, just talking about like, The fact that it's a disabling condition, but it's an energy restricting disabling condition and just the hurdle of putting in an application of getting all your financials together of getting, you know, proof of having an illness that, as you said before, is often, um, Doubted in the first place.

It's, it's a massive undertaking to be even able to, um, to apply in the first place. And yeah, when you need it most it's not, and it's not there for you. It's, um, yeah, just, I mean, disappointing is the only word that comes to mind. Yeah. I mean, I don't even see why you bother paying for the coverage in the first place.

at this point. Like, I'm so disillusioned by it. Yeah. You know, it's just, you know, you pay the premium, you expect to, to, you know. to receive the coverage when needed. and beyond that it's not like you know I had so many doctors say then they come back and they say Oh it's not disabled like, what are you talking about and you're like, okay have you ever seen a POTS patient?

probably not but that's the world that we live in and it's unfortunate um, and it's scary to be quite frank with you it's scary that you know I, I wonder how many people who've become homeless because they've come down with POTS or ME and they had disability insurance And the disability insurer denied them unfairly and they had no other option and they ran out of money.

And that is now their situation because again, it all feeds back to this whole stigma against this disease or illness or whatever it is and disbelief towards it, um, which, you know, feeds back to everything we spoke about earlier, it's just so wrong. And I really truly hope as awful as it is, but the volume of people coming down with post COVID pods.

It's going to be the straw that breaks the camel's back, as it were, I don't know, whatever, tips it over the edge, that all of a sudden, you know, it's, we're no, we're no longer on disunderstood. We're on, we're under, I don't know what I mean. We are understood. We're not misunderstood. Yeah. Yeah. Trying to figure out how to do that wordplay.

I couldn't figure that one out quick enough. That's the goal. But at the expense of so many lives, um, it's sad that it has to get to this point, but I do think that, um, like you, like you were saying before, it's like there, we haven't met the people, the evil people with long COVID, but I, I have the same experience, um, with all of these illnesses.

And it's like, no one wishes this upon anyone else. And they, every single person hopes that their experience helps another patient down the road. Um, And their willingness to talk about it and, um, speak out about their experience. Um, and hopefully those are the straws that break the camel's back and, and, you know, and we see some more progress than we've seen.

It is scary though, being public as well. Like, I don't know if you've had a similar experience, but I did some interviews when I was in Germany and, you know, I got so many people reaching out to me from, um, on Twitter, I think it was. Um, I did a post and it went really viral. Um, I mean, you know, like a million plus people saw it, which, you know, I have like five people on Twitter, so I've never, you know, it was very odd.

Um, and it was extremely hard because so many people are reaching out to you for, Please tell me this treatment helped you. I need hope. I need help. I need, and you know, you're going through so much yourself and you've got all these people and then, you know, having to leave people sending, quite frankly, terrifying messages like, I can't do this anymore.

I can't cope, you know, and leaving them on read because I just don't have the volume or capacity to take that on, you know, and it's just like, It's just awful, and it's just, you know, you're hearing these, these voices of chatter going on, even though it's on the screen. Yeah. And it's just, you know, there's so many people out there suffering so much, and yet For some reason, our collective voice still isn't heard, and I just don't understand it.

Yeah. Yeah, it's um, there's a lot of, I think despair is kind of one of the words that comes to mind. Um, people are willing to share their whole life experience with someone that, They've never met before because of the shared experience. And I think that there's something really powerful in that. Um, but also it is hard to manage, um, when you do come out and announce publicly and you know, you feel sort of a sense of responsibility of doing something about it after that, while also having to just be honest with yourself about like, there's only so much I can do and I need to make sure that I, Take care of myself to stay upright to be able to continue to slowly chip away at this problem It's like a marathon not a sprint.

Yeah. No, I hear you and it's yeah, it's just yeah, it's just hard You know, it's just hard to have to know how much suffering is going on out there Right, and you just I just wish that you know, we could all be be better I mean, I often say like I feel sometimes like I've been I've been given the cheat codes to life You just haven't been able to activate them yet, right like Because going through this experience, you know, assuming I get back to as close to 100 percent as I can, it's completely transformed my life, and I think that the life I will live on the other side, and even now to a certain extent, would be so much better and happier than it would have been had this not happened to me.

Assuming I get better. Yeah. And right now, I've got the cheat code, they can't activate them just yet, or they partially activated them. Um, but it's, it's that, um, and I truly believe that I'm not alone in that. I think that everyone who's going through this type of experience, once they get better or, you know, when they get to a point where they're mostly better, will all go on to do better.

Great things, because, you know, you can't go through something like this. It really teaches you, like, you know, life is short, health is wealth. Like, I know there's all these things that you say, but when, you know, you're lying in bed unable to do anything, you've got money in your bank account, it's worthless, it means nothing.

I would give up every possession I owned to be in a store on a cardboard box to have my health. You know? I know that probably sounds a bit wrong, but you know what I'm trying to say is like, the value of my health is so much more than anything material. Yeah. And, you know, I know that I had my health and my health alone, I could go on to live a full, successful and happy life.

Um, but yeah, it's, it's definitely, even now it's completely changed my, my outlook and paradigm on, on the way I approach things. And it's odd times where I'm happier now than I was in my lifetime. Before all this, and I think that's, you know, if you, if I can be happier now, despite feeling so awful and so unwell, like it's really showing, right?

Like so many people, you know, I call it chasing the mirage, you know, Oh, I'm going to get that. If I do this, I'm going to get that next promotion and then I'm going to be happy and you get there and then there's the next one and it's this constant mirage and you never actually get to the oasis. And it's, you know, realizing that the journey is the reward and recognizing that, and, and I don't think had this had happened to me or some other type of experience that happened to me, I don't think I would have ever realized that I do live so much more for the moment.

And yeah, I'm not perfect, right. But, you know, I, I definitely, and I would hope, I assume that's probably something similar for you. Right. But it's, it's trying to. You know, also talk to people, like, going through what we're going through, but also talk to going through what we're going through, and I sort of say to them, like, you know, stop chasing that mirage or whatever, like, you know, like, it's like, you know, enjoy the small mundane things in life.

Like, for me, it was when I could start doing dishes again. Yeah. For the first time. I mean, now I hate doing dishes again. I know. Me too. It took like two years of doing them. I'd be like, I enjoy this. And now, like, God, I hate them. But like, it's, you know, I still try. Like, every time I get home, my cat comes out.

And, um, you know, I always stop and try to pet him. Or before I just walk by. And there's little things that, you know, I don't know. And then it's, so, yeah. As awful as this condition is, it's led me to some really nice places in terms of just my own self and my family and my wife and friends, but also in the sense of meeting great people along the way.

And I just hope that one day we can all be healthy and have a big party somewhere and celebrate, you know, being healthy and happy, you know? Yeah. Yeah. I, I definitely, um, I definitely feel the same way in terms of how my perspective on my life in the world has changed. Um, I have always been a very type A on top of it, um, seeking the highest achievements possible.

Um, and I would say that that part of me hasn't really gone away yet. My patience and my ability to be in the moment and, um, My appreciation for the little things like you mentioned has, has, is completely changed. Um, you know, I used to be forcing myself to be out of the house and doing something at all times to be able to feel like I was making the most of my time.

And now some of my favorite moments are spent like Friday or Saturday night on the couch with my boyfriend. And, um, just like, Sitting and, and being at peace, which I think is, was a very foreign concept to me. Um, No, I, I totally hear you there. I mean, very much the same type, a always out active disease.

And yeah, I mean, don't get me wrong. I'm still an ambitious individual. It's just like, I don't know the target change. I don't know how to explain it, but like, I still want to be, but my, my version of success is different, you know, what, how would you define your version of success now? Um, good question.

Happy, being happy. I don't know what exactly that looks like, but it's just finding happiness and, and being happy. It's less about my career now. It's about doing something I enjoy, you know, not just doing a job because, okay, I need to do this. I want to get there. I want to become, you know, this CEO, whatever it is.

Yeah. It's different now. It's more about, okay, do I like the people I'm spending time with? I'm working with successes. It's just, it's more holistic than about everything around me than where I'm going. Yeah. I don't know. Yeah. I, That's wonderful. Um, I think that and I don't I don't know if you feel the same way, but I don't know that my Perspective, um, which I feel like has changed very similarly would not have done.

So had I not been put in this position, I think I would have been chasing the mirage or as I would say, just like the rat race of life. Um, I would be, I'm like the perfect rat race candidate. No, me too. A hundred percent. Me too. Like, you know, and it's, and I guess like ultimately, I guess there's nothing wrong with that.

Right. But sometimes like, I don't know, it happens to you, but sometimes I get like, And it's awful, you know, because envy is a thief of joy, but sometimes I do get envious of people who have their full health and, you know, I wish that they weren't doing certain things or whatnot. And I, you know, I thought myself all the time, I said, James, you can't think like that.

Yeah. But, you know, it's, it's hard sometimes, right? Absolutely. Because, you know, I mean, you know, I mean, I remember, it even happened to me, I, I tore, you know, I was skiing and I tore a bunch of ligaments in my knee and I remember, you Like, I'd see, you know, people with healthy knees and I'd be like, damn, I want to be them.

You know? Um, but I guess it's the same kind of thing, but like, yeah, I'm working hard on obviously not ruminating in that, but like, it's, you know, we do just ultimately wish that we could be our normal, our previous normal selves, but with the experience that we've got. Yes. Along the way. Right? Yeah. What a magical place that is.

Maybe that's heaven. Maybe it is. Yeah. We'll see. Well, um, because I, I one, just want to thank you for everything you shared. Um, but because you're a unique guest, um, and that you have a male patient experience, um, do you have any, anything about your experience that you feel like it's different because of that part of your identity?

Um, I know you mentioned, you know, you have thoughts of like, maybe my Uh, diagnosis trajectory would have been different had I been a woman, but, but anything that you feel like, um, stands out to you that you feel like is different because of that part of your identity? I have to kind of pinpoint exactly what the male experience in this might be, but I do think that male POTS patients experience from external parties.

is probably different to, to women. Um, you know, perhaps in some ways it's good in the sense that maybe we do get pleased more by doctors, but at the same time, is it more negative in the sense that there is, you know, potentially more pressure to just kind of man up as it were and get on with it. Um, you know, um, so that's something that, you And, and mentally, right?

Like a lot of men, you know, suicide rates in men are what, threefold of what they are in women, right? And, you know, why? Well, you know, it's that because men aren't very good at expressing themselves, talking through their emotions or, or what, and our men who are going through this illness, bottling things up, trying to push through, especially, you know, if you're a older gentleman from a more traditional home and you're the breadwinner and the pressure that it then puts, if you don't bring in the income to support your family.

You're going through this, like, mentally, how does that, you know, impact you? You know, there's tons of different dynamics that are, are, I think, relatively exclusive to men in this, you know, again, extremely broad and, you know, and all that. But, you know, I, I have concerns that, you know, men are going through this aren't reaching out to people for help.

And are just bottling it up. And then, are they more likely to, I don't know, I don't know the statistics of men who have POTS are more likely to, you know, commit suicide in line with general suicide rates. But, you know, it would be I think it's logical to think that perhaps, yes, um, you know, obviously I'm quite fortunate that I'm quite good at expressing my emotions and I've always, you know, had a good support network around me, but you know, so that's something that I do, uh, you know, I'm concerned about is, is the mental health impact on men and are they seeking the right help for it and what's happening, um, you know, to do that.

But I think the shared experience between men and women like It's, you know, one of those things that's like, yes, yes, there's gender, whatever differences. But like, one thing that's really taught me through this whole experience in long COVID is that like, we are all just people and that shared negative experience, whatever, whoever you are, gender, race, religion, like it is a f***ng equalizer or balancer.

Yeah. Yeah. You know, it, you, all of a sudden, any issue that you had or somebody may well have had with somebody, I guarantee you all that shit would go away because of this, you know, like, it's just such a humbling experience to go through and, and, you know, there's this shared, um, experience that's so unique that I, yeah, I mean, it's, yeah, it is.

Yeah. I mean, it's, it's pretty crazy to, cause I. I think about like now some of the relationships I've had and some of the amazing people like you that I've had the opportunity to talk to and like what other thing would you like randomly reach out to someone on the internet and be like want to have an hour and a half conversation we've never met before but like I'm willing to tell you about my life story like that's it's not like a normal or like societally like accepted thing to do with any other topic.

No but yet at the same time like I've never met you before you haven't met me but like I, I know you. Yes. Like, I know what you've been through, right? I, I've lived through your worst days. Yes. And I know how f***ing unbelievably strong you are as a person, right? Yeah, and I know the same. Yeah, and it's just something that you can't explain.

It's like, I don't know, how to, almost like supernatural. Yeah. But like, every person with bipolar or long covid that I've met, I've just had this connection and it's just something I've never experienced in my life before and to connect with somebody on such like a visceral level of like, I know you and your worth, and yet you're still here standing, fighting, doing what you do best and trying to just.

You know, I always say to people, like, oh, how you doing? I said, yeah, I'm doing okay. I'm just trying to do the best with what I got. But aren't we all? Yeah. You know? Yeah. And that's it. Like, we're just, this is our life. And I'm just trying to do the best with what I've got. And how much more of a beautiful world would it be if everybody treated each other that way?

I know. And assumed the best in one another. I know. I appreciate that so much about this community because there's so much grace and, you know, Um, you know, maybe not always to oneself, but there's generally grace extended to others because you, you have that shared experience that has really changed you forever.

Yeah, no, it really has. And, uh, I mean, well, you know, I mean, you're not doing quite a lot better. I am. And there's, I, in more conversations that I've had with people I need to like. Almost make an announcement of like, I'm relatively normal in terms of being a human being and, um, and I carry a lot of guilt with that.

Um, but I'm, I'm trying to turn it into responsibility to do as much as I can to help people. Um, what do you think it was that, I mean, cause here's the COVID as well, right? Yeah, I had, I had mono in 2021 and then got, or no, sorry, that wrong year mono in 20, uh, late 2018 COVID late 2019 slash early 2020. Um, and then like quit my swimming career.

Cause I was like, it was like right before the Olympics and I retired. And, um, I decided that I was gonna, well, I didn't really decide my mom had to come pick me up and then I had to live with her, um, for about a year and a half. Um, where I essentially was like trying, I was trying to sort of train still for nine months, but it was like, I would go to a practice and then have to take like three or four days off and then I'd go to like half a practice and then I'd have to take three days off.

Um, and once I finally got my real diagnosis and like looked up, you know, what I was dealing with, I was like, this is not a short term thing that I'm going to be managing. So I retired, I committed to like literally resting. Um, for as long as it was going to take, um, lived with my mom, met my partner who then also started to help take care of me, um, who, like I was doing a little bit better at the time, but I'm sort of convinced that I'm like a COVID.

Transient POTS patient where I, I reached criteria for me CFS for about two and a half years. Um, and then once I started med school, the good thing about med school now is that so much of it's virtual. So I like learned so much from bed. I have, I'm like a horizontal student a lot of the time. Um, and I actually am starting my rotations in July and I'm just absolutely terrified to like, wow.

And I have a lot of, um, residual like fear of pushing myself. Um, I'm able to exercise pretty regularly. Um, but I, I'm like, I still require nine hours of sleep. I like have to be very strict about diet. I still can't tolerate alcohol well. Like there are a lot of things that I have a feeling aren't just never going to go away.

Um, I mean, those are all such kind of like, you know, in a weird way, manageable thing. Yeah. And good for you. And good. Yeah. Like, I mean, everyone needs good nine hours of sleep and alcohol is a waste of time, right? It's true. It's true. Yeah. I mean, look, I would, I would love to get to your level and, um, that's like my, um, You know, my absolute, I just love to be able to go for like a nice five kilometer walk, um, or three miles.

Sorry, I'll translate. Um, yeah, I just not have to think about it. Like, obviously I'd love to go for a jog or do some light exercise, like, you know, again, rowing or something. But, you know, I still believe that I will get there and I have to, because like. You just got to believe that you're going to keep going.

Um, but was there anything in particular that just like, do you think that helps you along the way or is it just time and patience and rest and sometimes it's just a bit of luck too, right? I mean, you got to ride it. Absolutely. Absolutely. That I don't attribute necessarily anything specific. Um, I would say that the thing that helped get me going again was, um, Um, I don't use it now, but when I was in like the worst of my Emmy in terms of like managing PEM and stuff, the stimulant was like the only way that I was able to get back to like doing some stuff again.

Um, mostly like cognitive, um, improvements I saw with just being able to think for a longer during the day. Um, And the funny thing was, is I ended up going off of it because The COVID insurance situation change where I was like able to see my doctor remotely in a different state. And then like, after that changed with COVID, I like got cut off and no one would prescribe me the medication anymore.

So I had to go off of it cold Turkey because like it was a controlled substance and I couldn't get it anymore. And I went on a trip with my friends and like had to get off of it. And the couple of months after that, we're like, Very brutal, but I actually think that I'm my baseline is better now and I'm not using it.

Um, So but I don't have a magic solution. I don't know what I did Like I, I wake up, yeah, I wake up every day and it's like, why am I in this position? But I've tried to turn it into like, I'm going to use my energy to like help the people that haven't gotten theirs back yet. So …

Thanks so much for tuning in to my conversation with James.

I hope you enjoyed his perspective that while unique also represents so many people fighting their illness with long COVID. You know where to find us at @dysunderstood on Instagram and TikTok and at Dysunderstood.com. I'm Ella Eastin and see you next time.