The Dysunderstood Podcast
Episode 3: Christine Transcript
Welcome to the Dysunderstood Podcast. I'm your host, Ella Eastin.
Welcome back to the Dysunderstood Podcast. Today I'm excited to share my conversation that I had with Christine Reid. Christine is an author, long distance backpacker, and trail runner. She's found so much joy and self acceptance through moving her body in the outdoors. Her debut memoir, Alone in Wonderland, follows one of these journeys.
You can find her on Instagram and TikTok at ruggedoutdoorswoman and read more from her at aloneinwonderland. com. She is a great example of female empowerment, showing others they can do hard things, and she does it all with a great sense of humor. We discussed her journey to a POTS diagnosis, balancing and sharing parts of our identity, and what she's working on for the future.
Here is my conversation with Christine. Hello! Hello! Oh my goodness. Sorry, don't mind me. I'm like finishing up my lunch. No, you're good. Nice to meet you face to face, finally.
Yeah, you too.
So, where are you, where are you currently?
Uh, Denver, Colorado.
Okay. Awesome. Thank you so much for, for taking the time to do this and I look forward to hearing also about how your recent adventures have been, um, with the AT and everything.
Sweet. Thanks for inviting me. Like, I don't talk about my chronic illness very often. Um, in my, like, hiking world stuff because I don't want to, like, alienate, quote unquote, normal people. Yeah. Like, I don't, you know, like, there's, there's a chronic illness space on social media for sure. And I, like, love chatting with other people who are, like, experiencing the same things I am.
But, like, that's not exactly my space on social media. And so I, I don't talk about it as much as I would like to. And I'm psyched, I'm psyched to, like, have that audience too, you know. Yeah. And
I, I think that at first glance, if someone were to take a look at your Instagram page, for example, which I've followed for, for months now, um, unless you like really paid attention, I don't think that that would be apparent to most people, especially if they're not familiar, um, with POTS or dysautonomia or these other conditions, cause you might throw out a buzzword or something and it might just go right over their head and they may not even interpret it.
So, um, yeah. If you don't mind sharing, I would love for you to kind of talk about how, um, like your decision, I guess, to keep some of that off of social media in addition to, um, like maybe if it's more subconscious than anything and, um, how maybe that helps you kind of cope with everything that you are managing on a daily basis.
Yeah, um, I definitely, I didn't get diagnosed until August of 2020, um, so I've, I, it's almost been three years now, which seems crazy, um, but, but I had already been doing this sort of, like, outdoorsy girl thing on social media, and I was in the process of publishing my book, which is a memoir about hiking, and it doesn't have anything to do with chronic illness, um, and the wild thing is, like, if you read my book and you're a person with POTS, you're like, this girl has POTS, um, but I don't, I don't talk about it in there because I, when I, I wrote the book.
I didn't know I had it. Wow. Um, and so my social media was completely built around, like, I'm an outdoorsy girl and I'm writing this book and I want to publish the book and share my story with other women and I want to empower other women to go out into the outdoors and like seek independence and like go do hard things and like I had this very.
specific, uh, idea of what I was trying to put out into the world, and then I, and then I got diagnosed with POTS. And so, I was like, does this change things for me? Does this change what I'm trying to do? Um, it, I mean, it changed a lot for my perception of myself, um, and has helped me come to terms with a lot of things that I've been dealing with my entire life.
Yeah. Um, I do really struggle still with like using words like disabled or like chronic, even chronic illness. Like I just, It's hard because I, I do relate to those things and I do, like, those things are true, um, but in some ways I, like, don't want to see myself that way and I have a lot of, I guess, struggle even with that idea, the idea that I wouldn't want to see myself that way because it's, like, there's nothing wrong with being that way and, like, I have so much respect for the people who are, like, wearing it very publicly and talking about it and, like, Sharing that side of this story, because that's part of my story too.
Um, but I think it's an interesting line that we, I guess, have to choose where we're going to stand on, in terms of like, how are we representing ourselves as a person with a disability, and like, how big of a label, like, in, in the list of things I identify with, like, where does the, disability or chronic illness fall.
Um, and I think, I think for me, like, woman and hiker are still above disabled. If that makes any sense.
Absolutely. And I, I don't think that anyone would fault you for, for choosing those things. And I, at least in my experience, have Received a lot of gratitude for the minimal or, you know, little amount that I have spoken up about my chronic illnesses and my disabilities.
And I think that like, like you said, your, your presence and your platform was built on your two most important identities. But I think that people are still following you from this community and also benefit from seeing all the amazing things that you are doing. And continuing to push that as the most important part of your identity because I think there are people that also want to live their life that way.
And so, um, I think the amount that you are sharing is your personal choice and there's no, there's no shame in, in, you know, choosing to do something a certain way. I think, like, I have definitely struggled with that too, um, so I, I relate to a lot of what you're saying and it's an ever evolving process, right?
Like. We, life is going to change, um, our bodies are going to change, and I don't think that it's necessarily gonna, it's not stagnant. I think that it will evolve just like we do. That's very true. And I actually recently changed the tagline on my, my Instagram profile to say athlete with dysautonomia. Um, you know, three, almost three years after being diagnosed.
But I think there's also something to be said for like, Representation of just because you have a chronic illness doesn't mean that has to be the most important thing about you. Yes. Like, I, there are other things about me that I want to prioritize and hold dear and show and exemplify in the world. Um, and I think the fact that I'm doing all of those things with a chronic illness like that is Also important, um, but I don't want to, like, raise my chronic illness above the things that are truly important to me.
Yeah,
yeah, and that is, um, I think, you know, incredibly important for others to feel like they're allowed to do that as well. They look at you and Um, I mean, aside from the fact that you have a following, um, you know, you're embracing the parts of your life that have always been important to you in addition to managing what you're managing now.
And I think that is super inspiring to others. And, um, I think that. You know, going back to when you said you wrote your book, um, without even knowing that you had POTS, but others can see, you know, what you were going through, I think they also can relate to that experience of, they're having all these symptoms, they haven't been diagnosed yet, um, there's kind of a, it's, it's very, I guess, unique that you were able to put that out with that perspective, and I think it reflects a lot of people's experiences, Um, so I think it's, it's actually pretty neat how it worked out that way.
And obviously you probably would have liked to have a diagnosis sooner, but, um, but that experience I think can, can benefit a lot of people if they're able to read it. Um, so, yeah,
yeah, absolutely. I do think, I don't like, it's almost like an interesting test case of like, this is what it looks like to not know what is wrong with you.
Yeah. Because I talk a lot about, in the book about. Like, really being down on myself and like, this is such a struggle and why are things so hard for me when they don't seem to be that hard for other people? Like, that's a huge part of the, the journey that I was on at that time in my life was just this, like, why do I suck at everything so much?
Um, and I really, like, play out that, those insecurities and the thought loops and the things that were in my mind and heart at that time. And then, of course, at the end, it's like Okay, well, there is a reason for all those things, but I don't even explain that in the book. Like, you just, you just leave being like, wow, this girl is having a really hard time out there.
Yeah. Which I think is also, so interestingly, also a very relatable experience to people of all different body, like, types and relationships. And, and, you know, I've had lots of women who are not quote unquote chronically ill or like have, they don't have a diagnosis. Maybe they do have something going on, who knows?
Um. But I've had lots of women reach out to me and say, Oh, this is exactly how I feel, too. You know? Yeah.
Yeah, I mean, the title's very apropos. I love it, I think. I appreciate the positive spin on it too, because it very much could be like alone in a desolate, ugly place. But instead it's, you know, seeing the beauty in, in what's around you, even though, you know, what's going on inside of your body and mind may not be, um, a perfect wonderland.
Um, but I think the, the overall. Like the overarching experience, um, can be framed that way. So I think it's beautiful.
Thank you.
So I would love to hear a little bit about your, I guess, path to diagnosis. And we have your amazing story that you shared with us on the platform that the listeners can read, um, on the website blog and, um, But I would love to hear kind of the, the most salient points that you feel like were kind of milestones in your chronic illness journey.
Um, whether those be positive or negative, I think it's important to talk about both. Um, but would love to hear about
that. Yeah. Um, I have had symptoms as long as I can remember, so I don't know what the catalyst for this was. Um, I was born with gastroschisis, so I had surgery five minutes out of the womb, um, and so it could be that I've, like, had dysautonomia since then.
Maybe gastroschisis is related to dysautonomia, who knows? Um, I had a lot of stomach issues as a small child, and I was, like, regularly tested for a whole bunch of things, um, and they never found anything quote unquote wrong with me. Um, through my teen years and early twenties, I was I had scoliosis. I had spinal surgery.
Um, I was an extremely unfit and inactive child and young adult. Uh, I started hiking and running in my mid twenties, sort of as a punishment for how much I hated my body. Like, I just wanted to fix it. And, and the things that I saw wrong with it were not things that I thought were, like, legitimate. It was just like, I'm out of shape.
And every time I try to do something, it's very embarrassing. And I didn't like the way my body looked, and it was, you know, social programming and all of the things. Um, and so I got into hiking, then I started running. Um, in the fall of 2019 and spring of 2020, I was training for a 50K. Uh, I was a very slow runner, but I was like, I can run forever.
Cause I'd been, you know, I've been training and training and training. And I was like, I had run a half marathon and I was like, I think I could run longer. Um, so I was training for a race and my partner, uh, was on a run with me. He's not a runner. And he, he, he goes, um, why are you breathing so hard? And I was like, it's hard to run.
Running is hard. Uh, True. And he was like, we're really running kind of slow and he wasn't breathing hard and he's not a runner. And so he was like, that seems weird to me. And so then we started comparing our Garmin, our Garmin data, um, heart rates and things. And very quickly, he was like, You know that's not normal, right?
Like, the things that your, your body is doing is not normal. And I just never researched it. I'd been wearing, I'd been wearing a running watch for four years at this time. And I'd never looked at the heart rate data. I didn't know what your heart rate was supposed to be. I just knew this is what my body feels like when I run.
And so I was just like, this is normal to me. Yeah. Um, and so he said, I think you should go to a doctor. And I had many times previously in my life hoped that the doctors would find something wrong with me so that I could make sense of what seemed to be abnormal. Um, but they never did. And so I, like, kind of just came to an understanding with myself that this was just my experience in life.
Um, and then he, he made me go to a cardiologist. And contrary to many people's diagnosis stories, my story was, I went in there, I explained what happened, I showed them my heart rate chart, and my doctor said, you have POTS. Wow. So, I mean, it was 30 years into my life at that point and I had been to many, many, many doctors along the way for different symptoms and different things and they had never even considered or mentioned it, um, but this doctor, like, I went in, I actually explained to her nurse.
What was going on. Then I explained it to the doctor. The doctor said, it's POTS. And the nurse went, she had also thought that it was POTS. We love that for her.
I was like, great. Okay. And then I did end up getting like, uh, an EKG or some kind of like imaging because they were like, we want to make sure there's nothing actually wrong with your heart.
Um, and so they did some imaging and things, they didn't find anything. And so they said, yeah, it's probably this.
Wow. So what advice did you get then from the physician in terms of how to manage all of
this? So they gave me a trifold pamphlet. Um, with a list of symptoms. Um, the last symptom on the list was exercise intolerance, which just really did it for me as like a comedy piece.
Uh, I got to laugh at least before I went home and cried. Um, and then, yeah, I'd had some suggested, uh, treatment things, you know, eat tons of salt, wear compression socks. Um, a lot of the things were things I was already doing. So no caffeine, no alcohol, um, sleep hygiene, just like basic self care things. Um, and I think as a person who struggled a lot with my body, I had eliminated a lot of those things along the way just because I could tell it made me feel better.
Yeah. Um, I was actually a really heavy drinker in my early twenties. And so I've been sober for like seven years. Um, and caffeine always had made me feel like my heart was going to explode. So I never, I've never had a cup of coffee in my life. Like, yeah, a lot of those things I was already, you know, drinking tons of water, like I was already doing a lot of that stuff.
So really the big takeaways for me reading the pamphlet were, um, the salt. And the compression socks, which I'm, have a love hate relationship. And don't, and I don't know that they really do anything. I cannot say that I feel like they're doing anything. Do you wear just the socks, or do you even ever wear them anymore?
Um, I tried it at first, and then I was like, this doesn't do anything, and so then I didn't for a long time. And now that I'm hiking really long distances, I'm experimenting with them again. Okay.
Yeah,
I personally feel like. I think that I benefit from them the most when I'm still, so if I'm on a long car ride or in an airplane, that's where they really benefit me.
I know that you do a lot of movement, so, um, yeah, I was just curious to see how, what your experience was like
with the bed. Yeah. I'm kind of testing out, like, is it different when I hike with them or if, should I put them on after I hike and then like lay flat with them on, that kind of thing. Yeah. Um, when I'm not being active and I'm like doing whatever around the house, I wear pretty tight.
compression leggings. Got it. But I've just always liked those, right? Like, that was one of those things that I was like, maybe that's why I feel the need to wear these. Yeah.
Wow. It is. It is wild. When I hear how people have self treated before they get a diagnosis, just based on trial and error of. You know, decisions and behaviors.
I think that it really is a testament to, you can make good choices when your body really tells you that you need to. Um, and so that's always a really hard thing with health because you make a choice and it might be good in the moment, but then you have to, you know, figure out what the consequences are going to be and then make the decision next time of whether you're going to do the same thing or not.
So, um, yeah. I think our bodies tell us way more than we are trained culturally to listen, like, I think if you really tune in and listen to your body, there's a lot of intuitive knowing of what we need that is happening inside of us. Yeah.
Tell me a little bit about how you use that. in your life now with how much activity
you're doing?
I think the biggest battle ongoing is whether to rest or be active. Um, and I, like, I think this is something a lot of people with a diagnosis, a POTS diagnosis or dysautonomia diagnosis are really afraid of overdoing it. And I will say, like, our doctors aren't the greatest at encouraging us to push ourselves.
Um, and when I told my, when I got my diagnosis and I told the cardiologist, I'm training for a 50K, and she was like, that's crazy. Like, people with POTS don't run. Um, and I was like, am I at risk? Like, am I putting myself in danger by doing this? And she said, no, if you can tolerate it, you can do whatever you want.
Like, there are not actually limitations. Um, you know, there's safety things, like, if you're a person who faints a lot because of POTS, you need to be careful about where you are and what you're doing so that you're not, like, knocking yourself out when you faint, right? Like, there's, there are legitimate safety concerns, um, but they're very specific.
And generally speaking, like, POTS is not a diagnosis that you need to, like, sit on your couch about. Like, you can go do things, and it's hard, and the suffering is. Fuckin real. But like, you, you can do more than you think you can. And even do more than it feels comfortable to do. Um, and so the struggle for, for me most of the time is, is knowing the difference between like, I'm tired because I did something versus I'm tired because I've overdone something.
Um, and generally speaking, like, I feel the best when I'm active every single day. If I take a day off, like, I get fatigued. Also, if I go too hard, I get fatigued, right? Like, it's hard and it's hard and I think that you learn, you learn by doing and you learn by messing it up. And I have the luxury, like, I don't have a Monday through Friday 9 to 5 job where I have to show up and be functional.
If I do something and mess myself up and I'm like, I have to lay in bed today, I have the ability to do that. So, I understand that that's a very privileged position to be in. Um, but I think that going past the limit and seeing what happens to your body and then also figuring out how to recover from that.
Like, when I go too hard and I have a meltdown. I, I know how to fix it, like, I know what my body needs to be like, okay, this meltdown is going to last for a day and then tomorrow I'll be okay again, um, and I, I know how easy it is to trigger like, um, like bad, um, oh my gosh, what's the word that everybody uses?
Post exertional malaise? No. Very scientific. Um, no. Oh my gosh. A flare. Oh yeah. Yeah. Yeah. Yeah, I'm like, there's a word that everybody uses. Yeah, I call it a meltdown. Um, I know how easy it is
to trigger a flare. Me too, because
it's usually emotional too. Absolutely. Well, and that's like a word that I used before I had this diagnosis.
And I was just like, if I was like out on the trail and I was like, my shit's all out of whack and like things are feel crazy. I'm like, I'm having a meltdown. Um, so I know how easy it is to trigger a flare and then. For that to, like, last for a really long time and, like, be in it for days or weeks and just, like, I don't know how to fix this and, like, that sucks.
It's a horrible experience, but there are, like, if you get really in tune with the body and start to learn the patterns of, like, what causes this and then also what makes me feel better, um, and be able to really, like, take actionable steps. Rather than just going like, oh my gosh, I don't feel good. And then, like, it's so easy to feel bad and then you just want to lay down.
And it's like, that isn't gonna probably fix what's going on. Especially if it's like a hydration issue or something where you're like, okay, I need to like get the right things into my body right now. Yeah.
Yeah, it's, it is so hard too because Medical professionals are not inside our bodies experiencing what we're experiencing.
And so, each person needs something different. So, like, you're, you are your own guinea pig for the rest of your life. Um, and figuring out exactly what it is that makes you tick and what makes you fall over. So, um, yeah, thank you for, for sharing that. I'm curious, do you have any other diagnoses that you've received since your POTS
diagnosis?
I do not. Um, unfortunately, I'm on Medicaid and going to the doctor is really challenging. Um, so I have done some research on other things that are co diagnosed with. Um, and I, I am on the hypermobility spectrum, like if you do the like 10 tests thing, whatever. So I think it's possible if I were to go like get checked out that I might have something in that realm.
Um, and then of course I have scoliosis and, uh, that was diagnosed when I was quite young. Um, but no, I haven't had anything else diagnosed since then. I've also had endometriosis and several. Other like reproductive health issues, um, which I've seen also are co diagnosed often.
Yeah. Yeah. And oftentimes people are also diagnosed with chronic fatigue syndrome.
And so that's something that really, really complicates the algorithm of trying to figure out how much to push it, how much to hold back, what helps, what hurts, all of those things. So, um, Yeah, I'm, I'm very glad that that's not something you're, you're managing, given all of your, um, aspirations with hiking and running.
So, yeah, yeah, well, and it's also like. Uh, with different, um, my brain is not working today, um, I feel like we're, um, different autoimmune disorders seem to, like, come on as time, like, I have a good friend who has mast cell, um, and she has, like, horrible allergy issues and now I'm, like, really paranoid about that.
So, like, every time I start to have allergy symptoms, I'm like, oh my god, no, like, I, you know, like, because she really had, she really struggles with it. Um. But I do know that it's like those things can develop over time. So it's one of those like, I'm not only am I hyper aware of my body trying to just like make sure.
I'm taking good care of it, but also, like, is this changing? Is there a new thing happening? Yeah. And, you know. We're
also aging at the same time, so that is also another compli No! It's another complication of all of this is just normal life progression we can't get away from, too.
Okay, we're not even talking about that.
No. But I think also all of these things exist on a spectrum as well. It's It's, it's, I think when I was first diagnosed, I was managing, um, a lot more mast cell activation than I am now. And I don't know if that's because I've like removed things from my diet and done different lifestyle things. It just have helped it trigger less.
Um, but every person presents with some sort of percentage of everything I feel like. And, um, that also is like what complicates diagnosis and, and treatment and everything.
Yeah, absolutely.
So, I would love to hear more about the process of your book writing and what inspired you to
do that. Yeah. So, I got into hiking, uh, in my early 20s, sort of as a rebellion of sorts.
Um, I had finished college and was working a crappy job in health insurance and like getting yelled at by insurance agents all day. Um, and
Um, and you know, and my parents were like so proud of me, and I was like,
I hate this, and I worked at the same company my mom did, um, in very different worlds. She was like a payroll person, and I was in the actual insurance side of things.
Um, but I just like found a, a blog about the Appalachian Trail one day, and I was like, what is that? And I just went down the rabbit hole, and I was like, wow, this sounds amazing. Even though, don't forget, I was like an inactive, and unfit and like, not outdoorsy, had never enjoyed any type of exercise in my life.
Um, but something about it just really enthralled me, this idea that you could go out and like, suffer on that level on purpose to like, become a better person. Like, there was all this very romantic, like, you know, the Appalachian Trail will change your life. It'll make you figure out what's important. Like, it's just things that like, capture and inspire and I thought, I like, maybe I need that.
My life's kind of terrible. So, oh, this could make it better and, and I really was looking at it to like solve my big life problems. Right. Um, and I also thought if I go hike for six months, then I'll be like, quote unquote, in shape by the end of it. So, um, I attempted to do that. Things went awry as things do.
Um, three years later, I hiked the Wonderland Trail, which is what my book is about. Um, and through the process of those three years, I left home, I moved into a van, I lived in Denver for a while, um, I really started to like, try to figure out who I was as a person, and I served my independence as a young woman, um, and so really the book is about that, it's about the independence that we seek when we go off and try to do things on our own that Our foreign and new and fard.
Yeah. Um, and like leaving the family behind and expectations that have been put on us from our life. You know, and when I, when I got into this stuff, my mom was like, you have an amazing job and you're making all this money. And this is a, she said to me, this is a once in a lifetime opportunity. And I was like, if I have had the best opportunity of my life at 23 years old, that's really sad.
Like, I think I could do better. I think like if I, if I've. gotten this far at this point. Like, I think there is more opportunity available to me in the future. I'm okay with walking away from this thing that I hate.
That's so wise of you at that age too. And yeah, inspiring to do something about it, right?
I think it's sometimes easy to sit back and say, this is comfortable and safe. So I'm going to take the advice of my elders, but you had something inside of you saying there's got to be more and going for it.
Yeah. So I think through this, the whole experience of becoming a hiker and discovering the joys of the outdoors and like forming myself into a whole other person than who I was raised to be.
Like I, I wanted to share that with other people who might be me sitting at a desk at 23 years old thinking there's got to be more to life than this, right? Like I just wanted to share and inspire. Other people who might be afraid to take the leap because it is scary thing to do. Yeah.
Yeah. Especially knowing now all of the things you are managing with your body too.
It's particularly, um, I think particularly inspiring. Um, living in a van is a challenge in and of itself as a completely healthy person. And you were You were going for all of this thinking that, you know, you were in, this was just your body and you didn't have a name for it. Um, and I appreciate so much how.
You, you know, didn't make excuses for a lot of things and you just, you just made it happen.
Yeah, I do sometimes marvel at the power of naivete and the fact that sometimes not knowing allows you to do things that you might not do if you did know. And I do, I do wonder if I had gotten diagnosed at a much younger age.
If I would've done the things that I've done because I might've said, I'm a person who has this thing and I shouldn't do those things, or I can't do those things. Um, and so in some ways I am like, hesitate to say, but like slightly grateful that I didn't get diagnosed until I had entered this chapter of my life.
Mm-Hmm. .
Yeah. I think that's totally fair to say. I think a lot of people end up being grateful for the situation that they're in. Cause we never know what the alternative looks like, right? Like if we're able to enjoy the position that we're in now, it's, it's pretty safe to say, like, I wouldn't go back and change it.
Cause you never know how, how things would have really turned out. Totally. Yeah. So, where, are you still living in your van, part time? I'm part
time on the road. The last year I've been book touring, so I've been living in a minivan and traveling around on book tour. Um, I do have a home base in Denver, uh, so I sort of like will leave for two to three months and then come back to Denver for a stretch.
Got it. And do you feel like you are able to, like, manage these quote unquote flares? Um, as you need to on the road, how has that been?
Um, usually on every two to three month trip, I end up staying in a hotel once or twice. Okay. Um, because I, like, I've gotten really dehydrated and have a migraine and need to lay on the floor of the bathroom.
Yeah. And that is honestly, like, being able to take a bath and lay next to a toilet. Like, those are my two, like For items, I know people are probably like, ew, laying on the floor, of not even like your bathroom at home, but like a crappy 80 hotel bathroom. But like when you feel sick, like that, like the floor next to the toilet is like a safe space to me of like, I have everything I need right here.
It's cool. No one's gonna bother me. I don't have a toilet in my van at all, so if I'm nauseous and think I'm going to be like, throwing up potentially, then I want to be near a bathroom. And that, it does happen, and I have a budget for that, you know, whenever it happens, I'm like, ugh, I don't want to spend 100 on this, but it, that is what it is.
Um. Yeah. So, I mean, that's kind of my, my like easy bailout, but I, because I don't have the comforts of home, I, it's just like one more reason to pay that much closer attention to where my body is at and like head those things off before they get bad.
So how many miles on average would you say, like when you're on the road, you're hiking either in a day or in a week?
Oh, it really depends on what I'm doing. Um, on book tour, I'm doing a lot of speaking events and things. it depends how busy my speaking schedule is. Um, but I will get out and hike when I can. And so if it's like, Oh, I only have half a day, I might do like a five or six mile hike. Um, a couple of weeks ago, I did four days on the Appalachian trail and I hiked 80 miles during that time.
Um, Wow. And I'm, I'm, I'm training for something. So I'm enjoying like really big mileage right now. Um, I look forward to the day when this thing is over and then I can go back to like being a casual, a casual hiker who only does 15 miles a day.
Um, yeah, so right now I'm, I'm really like trying to get mileage in, so the numbers probably sound pretty crazy to most people who are. Professionally hiking.
Yeah. And are you keeping that plan a secret for now?
Uh, not exactly. I can, I can tell you if you want to share with people. Um, last year I attempted to set a fastest known time record on a trail called the Wachita Trail.
Uh, it goes from Eastern Oklahoma to Central Arkansas. It ends at a place that is very near and dear to me, uh, Pinnacle Mountain State Park in Little Rock. Um, the trail is 223 miles. I'm trying to hike it in about six days, which is like 35 to 38 miles a day, six days straight. Uh, I made the attempt last year.
It went not good.
I think that I might have neuropathy in my feet, um, that is not diagnosed, but it is excruciatingly painful. Um, so I've been trying to figure out that is actually the reason why I went back to trying the compression socks, because I was like, hopefully this will help manage that. Um, so I'm going to make another attempt in the fall this year.
So that's what I'm training for, um, for the next five weeks. Yeah.
So, I have a question for you regarding kind of making plans and setting goals for yourself given the context of your life and your diagnoses and everything. Um, is it hard to talk about setting a goal knowing that something may get in the way or is this something that you have kind of come to peace with, with all the experience?
Um, I There is, there's so much baggage around this in the outdoor world, um, culturally, especially in the fastest known time world, it is considered very normal for athletes to not tell anyone they're going to do something and then go do it and then tell everyone once they're done. Um, and so there's, there's sort of a cultural expectation and I almost would prefer the opposite and I wrote a blog last year announcing that I was going to make the attempt.
And in the blog I said, if I fail, I want you all to see that. Because I think it's kind of a weird cultural thing to like not tell people you're trying to do something until you've done it. Um, especially in the like overly positive Instagram world that we live in where we only share our successes. Like, I think it's important to see people failing.
Especially people you respect and look up to and that you know are capable of huge feats. Like, I think it's good to see, like, this person who has done amazing things still fails sometimes.
You know? Yeah. Yeah. Yeah. I think, I think seeing the, the attempts and the failures also encourages other people to go out and try things that they never would.
Um, so I absolutely agree with that sentiment. So I appreciate your openness about all of that. And I think that. It's impressive to 99 percent of people, 99. 9 percent of people, to even go out there and think about doing it. Um, so I commend you for that. Yeah, and I think also we don't give people credit for like, halfway doing something huge.
Like, if you talk to people who've hiked the Appalachian Trail and you're like, you know, I hiked 650 miles of the Appalachian Trail, which is like a third. Um, they're like, Like, you failed. You didn't do the thing. And if you talk to literally anyone else, they're like, oh my god, you hiked 650 miles. That's amazing and insane.
You know, like, I think we get into these niche worlds of people doing crazy things and then we think the things we're doing aren't impressive. And it's like, two weeks ago I hiked 80 miles in four days. Like, to the other athletes in my social circles of hikers, that is like no big whoop, like they've all done that too.
You know, but to like, other people, that's unthinkable. Like there's people who are just like, I could never imagine doing that. You know?
Even your past self.
Exactly. Yeah. Me 10 years ago. This is, I'm almost exactly 10 years from where I, when I discovered the AT. So if you had talked to me like a month before I figured out the AT existed and you were just like, want to hike 80 miles in four days, I would have been like, are you high?
You're like, we can drive it. How does that sound? So
I think a lot of times when we attempt to do something and we don't succeed, like we've still done something.
Yeah, yeah. And I think I try to, to frame my work in this space the same way because I'm, you know, limited by my schedule and also my energy and, um, you know, something is better than nothing.
And our small contributions are, um, are also really important in the grand scheme of things. And I think it goes, um, It's the same thing for either athletic attempts or attempts in any world. It's like even in the startup world, one in a hundred something are actually a success if that, um, so I think being exposed to failure from a young age is really important and.
Um, I don't know that we necessarily talk about that enough, and I think that's why we have such high expectations of ourselves when we grow up. Um, so, I love that you are, you're open to sharing all of the ways that you have struggled. Um, because I think that's also incredibly inspiring to others. That's so sweet.
So, do you mind sharing a little bit about, um, if you're comfortable, about What you are doing for work, anything that you have planned or hope to do in the future other than what you just shared. Um, I'd love to hear about kind of long term things that you've pictured
for yourself. Yeah, so I actually, I have.
I've been a quote unquote professional writer for the last three years, right? My book published in January of 2021. Um, I spent the last two and a half years basically promoting, being on book tour, doing a full time marketing job for myself. Um, you know, I do the social media stuff. That really doesn't make as much money as I think people think it does.
Um, you know, it's a hustle. It is. Um, and I have done some freelance writing and I've taken a few, like, gigs here and there. Um, I am getting ready to launch two new projects. I'm actually looking for submissions for two new projects. So I'm working on a collaborative book that is going to be all women's stories from the trail.
Um, and they're with a focus on what it is to be in a female body on the trail. So, I want to hear your like, like, boob sweat and Periods and just sliding, being disgusting and dirty and like how you feel about that as someone who was raised to like be pretty as part of your life's job description and like, you know, all the, all of the things that go along with like being a woman on the trail in a physical body that's doing all the normal things a physical body does that we're like told to pretend we don't do.
So I'm working on that. I actually just launched submissions for it today, kind of quietly, but I'll be like more public about it in the next couple weeks. Um, and then following that, I will be also starting a podcast. Um, and I'm not quite ready to like launch that into the world, but it will be adjacent to the book, not exactly the same, um, but also women's stories.
Well, congratulations and thanks for pushing, you know, the female stories out there. I. Um, I love the authenticity of all of your content and I think that it's, it's what we need to see. Um, so I mean, it's almost one of those, like, is this white noise feelings? Because women's stories are being uplifted right now so much and I love to see that.
But I also think we have a lot of making up to do for the last couple hundred years. So more women's story because. Yeah, and I mean, I think it's really fitting because many of the people in this community of Disunderstood in the greater chronic illness disability space are women, um, for many, many years we were written off as being hysterical, um, for all the symptoms that we manage, um, and are finally slowly starting to be validated by at least a portion of medical providers, um, and the human body.
I just love when, when anyone uplifts, you know, female stories and in any space, but I think especially the ones that you are highlighting are particularly important talking about, like, We have bodily functions to we have life experiences to and are also totally down for getting our hands dirty and doing really hard things.
Um, so I really, really appreciate it. I'm really excited about it. And I feel like when I'm in the outdoor, like, Uh, forums and things online, especially the ones that are, like, women's specific. There's, like, there's a million threads about women being like, What do you do about your period? And, like, how do you do, like, It's always the same questions.
And I'm like, Okay, we are all asking the same question. I have not seen a book that talks about this. I have read a hundred outdoor memoirs by women, and almost none of them mention it. And I'm just like, girl, you're on the period, you're on the trail for six months. Did you have your period? Why didn't you talk about it?
Like, why is this a secret? Who do you think is reading this book? It's other women. Like, why are you not talking about this? So, I just feel like it's time to just be like, this is a book about periods. Deal with it.
No, I love it. And I think that men particularly should read it too. My partner was like, this is a great idea and I can't wait to read it.
Oh. Oh, I appreciate that. He's not a, not shy.
He was like, bodies are weird and they do crazy things. And like, I, this is a bodily experience I will never have. And I'm fascinated and want to hear about it. And I was like, well, hopefully other men will feel that way.
I love that. Um, can you talk a little bit about your Relationship experiences and kind of in the context of your POTS diagnosis and how that has either changed your perspective on dating or how it's affected your dating life.
Yeah.
Um, so my partner that I'm with now is actually the one who told me to go to the doctor. So, um, he's been amazingly supportive through all of this, which I don't know that I can like say enough about. So, um. Get a partner who is really important. Yeah. Um, he, he's a really encouraging person and he's really impressed with what I do and he has a really good way of sort of putting things in perspective for me when I'm down on things and I'm like, I suck.
I'm never going to be able to do this. Like, he says like, you know. I've seen the things that you can do and like you're so strong and all the encouraging wonderful things, you know, uh, and, and then he also has like a funny way of keeping me in check when I'm like hype dreams, crazy talk, you know, like I follow all of these amazing ultra runners who are like winning races and like a mate, like.
Beasts doing things that my body will never be able to do. Um, and I'm like, oh, what if I did that? What if I could do that? Wouldn't it be cool if I could do this? And he's like, okay, but like, you know, that might not happen. I love it. You know, we, we keep it real. He's very supportive. Um, and he's very in tune with my body and what is going on with me.
And, you know, sometimes I have a hard time saying, like, I just need to lay down today. Because he, I've told him I'm going to do something or like he, I feel like he expects something from me and there's a level of like, I don't want to tell you that I'm just like completely drained right now. Um, and he is perceptive of my needs and he will ask me directly, like, do you need this?
Or, What's going on with you? If I'm like just being fucking weird for no reason, you know, I don't think he'll be like, what's happening? He keeps pretty close track of my cycle So he knows when I'm like need to lay down for the day Like I have basically a day every month where I'm just like I am only laying down today And he's like pretty good about that.
So, you know, I can't imagine like Not having those things after having had them, and I know all men are not that perceptive and not that aware and weren't raised to be, and it's not necessarily their fault, but I appreciate it. Like for a person who, whose needs are as specific because of chronic illness as mine are, like, that kind of support is almost necessary.
Yeah.
Well, I think for you, it's kind of a non negotiable now, and I'm, I'm really glad you have that support system. And I think the things that you mentioned that he is able to do for you is, Um, or just a few great ideas for, for other people that have partners that are living with chronic illness. And, um, sometimes it's just asking a couple more times, even if the person says, yes, I'm fine, you can say it's okay if you're not fine, what's really going on, um, you know, clarifying because.
You know, we have pride, and we don't want to not be okay, um, but sometimes we just need a little extra support. Yeah, and sometimes
even a reminder to check in with ourselves if I'm in a go go go phase where I'm like, gotta do all these things, like checking off the list, doing whatever, like, those are times I tend to check in with my physical self less.
And so, if he notices, like, you're acting different or, like, something seems off, that is a reminder to me to, like, check with myself.
I love that. Like, having someone that is, like, granting the permission that you're not gonna grant to yourself to, to just reflect on, on where you're at. Totally. Well, thank you so much for joining me today.
It was so wonderful to meet you face to face. And I just want to say, I appreciate all of the work that you're doing for, um, this community for the broader community of women and for continuing to inspire us all with all of your adventures. Um, and I look forward to seeing your future work. And listening to the podcast when and if it comes out, um, but thank you again for contributing to this community.
And I hope that we'll continue to have you, um, as a part of the platform. And, um, we just really appreciate it. Absolutely. Thank you so much for inviting me. Talk soon.
Hope you enjoyed that conversation as much as I did. If you would like to share your Dysunderstood story, you can head to Dysunderstood. com slash contact us. You can find all things Dysunderstood at our website or at Dysunderstood on Instagram and TikTok. And you can find me at Ella Eastin. Have a great week.