Episode 105: Naturalist Brittany Sumner on Life with Rare Muscle Disease Paramyotonia Congenita

Episode 105: Naturalist Brittany Sumner on Life with Rare Muscle Disease Paramyotonia Congenita

Overview

Born and raised in South Carolina, 27-year-old Brittany Sumner always felt like she was different than her peers — both physically and mentally. At an early age, she began falling over without explanation, finding herself unable to climb stairs, going cross-eyed, experiencing slurred speech, choking on food, and feeling almost constant fatigue. It took some time to find a specialist who truly saw her symptoms as something more, and was finally able to diagnose her with a rare condition called Paramyotonia congenita (PMC). While the diagnosis gave her a sense of relief, it also scared her. What if she couldn't do the things she loved so much? What if she couldn't get a job because of her muscle disorder? Fast forward to her adult life: she is a wildlife biologist, outdoor educator, and conservationist. While she’s currently unemployed because of COVID-19, before the pandemic started she was working as a naturalist — taking students on hikes, teaching them about ecology and the outdoors, and leading conservation and sustainability study-abroad trips for high school students. Her passion is the environment and teaching the next generation about the importance of protecting it. While she’s busy inspiring kids, her students inspire her to get out of bed each morning, too — especially when she is having a bad pain day. In her free time, she loves to kayak, garden, hike, read, and spend time with her new niece!

Takeaway

Transcript

Brittany Sumner Paramyotonia congenita naturalist conservationist Uninvisible Pod chronic illness disability

Lauren: All right, guys, thank you so much for joining us. I am here today with Brittany Sumner. Brittany is a naturalist. And she lives with a really interesting condition. It's called paramyotonia congenita (PMC). It's a muscle condition. And she's going to tell us all about it, and how she discovered it. It's pretty rare. So Brittany, thank you so much for joining us on the show. 

Brittany: Awesome. I’m so glad you’d have me. I’m excited.

Lauren: Oh my gosh, of course. Yeah, it's really great to have met you and connected with you. Because actually, you reached out to me, and let me know about your condition, which I'd never heard of. So it's really, for lack of a better term, it’s exciting for me to meet other people with conditions! But this is such a fascinating one because it's got to be a tough one for doctors to spot, as we were mentioning before we started chatting. So why don't we jump in from the top of your story? Can you tell us how you first realized something was going on that was funky, and what steps you've taken to control your health since then?

Brittany: Yeah. So when I was little, like really small, I don't think I really realized that there was anything wrong. I fell a lot. I couldn't always keep up with my twin sister when we were running around. Or we’d go upstairs and I'd be, like, “Hold on, I gotta take a minute!” But I didn't realize that was different, you know. And I went cross-eyed a lot and in kindergarten that was funny to everyone. People would always point that out. But I didn’t realize  that anything was wrong with me until I think I was maybe in second grade. We were doing a relay race and all the parents were there; it was like a field day. And you had to take off, run around the cones and then come back and smack your friend's hand, and then they would go. That game everyone's played. And I was so nervous about it because I knew I wasn't fast and I had a hard time running. And so my friend came and hit my hand; I took off running. And I just completely froze and hit the ground like a rock. Which had happened to me before.

But there was this woman on the sideline, someone's mom, and I could hear her in the background … she goes, “There's something wrong with that girl.”

And no one ever said that. I'd never heard that before. And I just got up, and I was just so, I guess, embarrassed.

Lauren: It sounds like it was just your body reacting. Your mind didn't slow down, it was literally muscular.

Brittany: Yeah, I’m telling myself, ‘Go, go, go!’ and my body’s, like, ‘No.’ So that was the moment when I was, like, you know, maybe something is going on. But I didn't really know how to voice it. My family had taken me to the doctor before that, probably in first grade, because of little things they’d noticed — me having a hard time getting up from a chair, and stuff like that. But I live in rural South Carolina, so only small-town doctors were, like, “Oh, there's nothing wrong with her. She's just nervous, or she just is clumsy.” 

Lauren: She’s growing, yeah.

Brittany: Yeah, they just had all these reasons for why things were happening. Oh, she has a lazy eye; that’s why she goes cross-eyed. They were, like, “Nothing's wrong there.” So obviously, people take what the doctor says as fact, and we move on on our lives. So fast forward, I'm in eighth grade. I played volleyball; I played a lot of sports because that was how people thought I would get better and be less clumsy. So I was playing volleyball and I was the setter, the one that sets the ball over the net. And I remember I hit the ball, and I had a bad episode where all my muscles locked up and I hit the ground. Sometimes I can get up pretty fast; sometimes I can't. And I just remember all my teammates saying, “Get up, get up! The ball's coming back over, and you need to get it!” And I couldn't get up. I just started hyperventilating, and I couldn't breathe. And that set off my adrenaline and adrenaline makes my condition worse; it makes my muscles more tense. And then it sets the episode off all over again. So it just was this vicious cycle of … I couldn't breathe, and I couldn't move. And everyone's coming over. They had to call an ambulance. That’s when I woke up in the hospital. I told my parents, "Something's really, really wrong. I know they said there isn’t, but this isn't normal. I'm not supposed to just fall like this and not be able to control my body. Everyone else is moving after the ball fine. And when they move, they don't fall.”

Lauren: Especially since this is a pivotal point in eighth grade, when you're finally becoming more aware of your body, for better or for worse. So, quite an interesting time to become aware of something like this, where your muscles are just locking up without your control.

Brittany: ...

Yeah, it had just become my normal.

I was just, like, well, if they say there's nothing different about me, I’ve just got to figure out how to … and I have come up with ways to prevent it from happening. Like, if I kept moving, instead of a sudden burst of movement, it would make it better. But you can't always do that, depending on the situation you're in. And you can’t always wait for all your friends to go up the stairs and then you go last. It was starting to become unavoidable. So they started taking me to doctors. I started off in my hometown, and they didn't know or they would mention what they thought it was, and they would test me and nothing would be wrong. So I went to the city, getting further and further away from home. I ended up in Greenville, South Carolina. 

Lauren: Well, let me just pause there briefly to say … this is an interesting point you're making first of all … living in a rural area, you didn't have access to the kind of specialists that you needed to be seeing. So you had to go further and further afield in order to find a doctor who was able to treat or diagnose you. That’s a tough thing, right? There's a huge part of the population that's living in rural areas, and how are they supposed to get diagnosed with various conditions, when doctors aren't educated in rare conditions?

Brittany: I was lucky enough to have a family that could do that for me. We had access to a car, and my mom and dad had jobs they could get off relatively easily to take me to a doctor's appointment. But I know that a lot of people don't have that. So that was awesome. I ended up in Greenville, South Carolina, I saw this amazing doctor named Dr. Morales at the Children's Hospital there. He saw me and he did three things. He made me do that hand thing that I showed you …

Lauren: So this is an exercise that you do where you hold your hands in really tight fists — and then release them to stretch them out fully, immediately, and do it as fast as you can. When I do it, I can go from a fist to a flat hand really fast, but yours takes several seconds for your hands to unfurl, because your muscles are tight.

Brittany: Yes, exactly. He did that and he did some other tests. He actually made me walk upstairs. I was, like, “Yes! This will show you, because I hate stairs, I avoid stairs because I can barely go up them. I'm like a robot; I go one step and I have to wait … I go the next step … have to wait. I don't know why it's specifically stairs, but stairs hate me! We did all these things.

And he’s, like, “I know you've probably heard this a lot, but I think I know what condition you have. You're not crazy. There is something wrong with your muscles.”

And I was, like, “You do?!” I got excited, but I tried not to get too excited because I've heard it before. He’s, like, “Yeah, it's called paramyotonia congenita. I've never seen it, but I've heard of it. It's really rare, one in every 100,000 people. But the only way we'll know for sure is if we do a genetic test.” So he did a genetic test and it came back — and he was right. I did have it, and I'm so thankful for him.

Lauren: Is that something that, because you tested positive for it, you does that mean you can pass it on to children if you have them? Does it mean that someone in your family history has it, too? 

Brittany: Yes. Genetic disorders … sometimes it’s a random mutation in a gene, sometimes it’s hereditary. They tested my mom, dad and sister because I have a twin; none of them had the gene mutation. So that means that I was just a random genetic mutation. But it's a 50% chance that I can pass it on to my children. So if I had kids, they could have this disorder as well.

Lauren: Luckily, you know how to manage it. So how have you taken on management of this disorder? Because you're someone who lives and works in the outdoors. I'm fascinated to know, and for our listeners to hear, what you've done. Is there a medication you can take? Are there exercises you can do? How do you manage a condition like this?

Brittany: So at first when I was diagnosed, they did give me medicine for it that could work/could not. It's not curable, but it could alleviate some of the symptoms. And for a little while, I think it did. But the side-effects of the medicine were worse than my condition. I don't know if you've ever had your feet go to sleep and that horrible pins and needles feeling? I would get that in my hands and my face and my feet, all the time.

Lauren: It was not comfortable.

Brittany: Yeah, and I took it for a couple of years. They were like, “The symptoms will go away.” They didn’t. But it wasn't really benefiting me enough to keep taking it. So I started just researching; I went down lots of rabbit holes, just researching on my own to try and figure out what to do. Because there wasn't really much information out there. I figured out since my muscle disorder resides in my muscle cells, our potassium and sodium channels are what releases ions and helps your muscles tighten and then untighten. Mine don't work correctly. They either stay closed or stay open. So, too much potassium … if I eat a banana, it messes me up. If I had a banana, in a couple of hours, I would be really stiff and not be able to move well. Or potatoes, and stuff like that. So, I’m trying with my diet …

Lauren: Watching potassium in your diet.

Brittany: Yeah, I try to eat a lot of natural things. It's hard because lots of processed foods have preservatives that are potassium-based preservatives. So I have to pretty much avoid processed foods, avoid a lot of bananas, potatoes, stuff like that. Anything that is high in potassium or preservatives. I figured out that my body really likes salt, though. So I like to eat a lot of salty things. And carbs seem to be really helpful.

My diet affects it a lot, so I've been using different eating strategies to see what works and what doesn't. 

Lauren: It sounds like you’ve had to figure that out yourself. It’s not like there was an online resource.

Brittany: No, nobody helped me, and they didn't even recommend for me to do that. Like, “You should do this; it'll help.”

Lauren: You're the first person I've ever heard of who has this illness. So I wonder how easy it is, also, to connect with other people who are living with the same diagnosis?

Brittany: Yes, it wasn't until like two years ago, I found a page on Facebook. And there's a couple thousand of us on the Facebook page. But most of them are international, in Europe it seems, so maybe it started over there, I don't know. But they seem to have a higher population of people with my condition. So we chat on there, and people post different diets that work. But what's really hard is that the disease seems to vary so much from person to person. Everyone seems to have different management strategies. And that's where it gets confusing when you talk to doctors, because if they have seen someone else with it, they’ll be, like, “Well, the other patient that has this, this is what happened to them.” And I’m, like, “That's not what's happening to me.” So there's not enough out there to get accurate information.

Lauren:  That's really tough. But you've managed to find things that work for you.

Brittany: Yeah. And I definitely go … I hike. I mean, sometimes up to 10 miles a day. 

Lauren: So you are physically active. It hasn't stopped you from being active. 

Brittany: I'm very physically active. I just had to figure out how can I be physically active and not hurt myself. And I am bad, I definitely have hurt myself. But I didn't mean to. Like I said, it’s  been a learning process. I know I have to take breaks. I always need water, always need a snack, always need a break.

Lauren: But that's been a learning curve for you, as well. Because if I recall, you have an amazing story I'd love you to share if you're comfortable, about hiking in Africa, right?

Brittany: Yes. That was definitely a learning experience there. Because I've hiked a lot in the US in the Southeast, which is hot, humid — and been okay. But it's the environment I'm used to, an environment that I've learned to be in. I worked in South Africa, doing animal behavior research in the Kalahari. And we took a trip to the Drakensberg Mountains, where we were going to hike to the second tallest waterfall in the world. Which was advertised as something that was moderate; I do moderate hikes and I'm okay. It's definitely something I struggle with, but it's never been dangerous for me. So we went on a supposed seven miles in a loop trip.

We went on this hike, and they did not accurately advertise...did not tell us all the things that we were going to encounter.

That we were gonna drive up to a really high elevation, not get acclimated to the elevation. They said there would be snacks, but their version of snacks are not really snacks; I should have brought my own snacks. And that we would encounter wind, sleet, snow, and rain. So another part of this disorder is that cold really affects us. I grew up here; it doesn't really get cold in South Carolina; even in the winter, it's not very cold. But really cold — in the negatives and low teens — hurts us. Some of us with the condition get almost paralyzed if they get too cold. I was not properly dressed for this hike. So we were hiking, and it got really cold and I already couldn't breathe well because of the the elevation gain, and that was making me lock up because my muscles weren't getting proper oxygen. Even the people who didn't have a muscle disorder were having a hard time. So I couldn't breathe; I was having to go like snail speed. Thank gosh, I had one of my best friends with me and she was there, being very supportive. But I had people on the hike who were getting very mad, because it was a guided hike — because you go through clouds; you basically can't see anything. So they didn't want you to get lost or fall off the the mountain because it was like straight cliffs on the side. Which was also very scary, since I'm prone to falling! 

Lauren: So I guess the group had to go at your pace.

Brittany: Yeah. So they would go to a certain point and then stop and wait for whoever. There was a guide at the front and a guide at the back, and they would wait for us to catch up.  I had emailed them about my muscle disorder before I got there and explained it to them and told them what it was, to make sure that they thought it was appropriate that I could go in there. But I don't think they maybe communicated that to the guides that were actually with us. And so when I tried to explain it to them, they were, like, “What?!”

Lauren: It says a lot about disability access.

Brittany: Yeah. And we really couldn't turn back. It was either “we keep going forward, or you spend the night here.” So we get to a section which was not a part advertised on the hike description either, that's basically climbing up boulders for probably at least half-a-mile. You couldn't even see the top where we were climbing; it was just straight up rock climbing pretty much. And I just looked at it and broke down crying, because I looked at my friend and said, “I don't know if I can do this.” I don't say that a lot. That took a lot for me to be, like, “I don't know if I can do this.” And I started panicking, which didn't help. So she and I came up with a plan. She was, like, “I'm gonna be ahead of you; I'm gonna be there for you to grab my arm if you need to. And we're going to point to a spot and we're going to pick that spot. And you're going to go to that spot, and then we're going to take a break.” Sometimes that spot was two feet up. Sometimes if I was feeling a little bit better, it was a couple of meters. But everyone else, it seemed like it took them maybe 30 minutes to get to the top. It took me about two hours, I think; I kind of blacked out to be honest. I got halfway and I just broke down to my friend.

I was, like, “I know I’m gonna do it. But I'm just really scared. This is the first time I've been truly scared that I'm not gonna get out of this situation, okay.”

I did make it to the top. And I definitely might have cried! For sure. 

Lauren: But what about the other people that you were with? You mentioned like, they were getting mad and annoyed. What is it like in a situation like that? Did you feel like you had to explain to them all, like, "Hey, I have this condition. Please be nice to me.” Or did you kind of feel like you didn't owe them anything? What was that like emotionally? Or were you too wrapped up in everything that was going on physically …

Brittany: It depends on the situation. I'm getting better about it. At first, I really didn't like telling people, because I didn't like to be treated differently, especially in the outdoor community, because I like to hike alone — which isn't actually good. I probably shouldn't hike alone. Because people treat me differently when they hike with me; they treat me like I'm disabled. I know it’s a disability, but I don't even like that word. 

Lauren: It’s just a condition. 

Brittany: Yeah, sometimes it just makes you feel … like, people think you can't do stuff. As soon as you say, “I have this,” they assume you can't do that. Or you shouldn't do that. Why are you doing that? In this situation, we got to the top, and the other people we were with were definitely very privileged in that they also thought they shouldn't have even been on a hike with other people. They wanted to have a hike just to themselves with the guides — but they didn't offer that, because it was through a hostel. They were talking about how they flew in from London … they didn't even want to be there with us to begin with. So I got to the top and one of the guys just started ranting at me about how you shouldn't come on a hike if you're out of shape. Blah, blah, blah, blah. And my friend just looked at him and she was, like, “You have no right to assume why she is going slower than you, that she's just out of shape. And even if she is, that doesn't matter, either.”

Lauren: The rule of hiking is that the slowest person sets the pace.

Brittany: Exactly, it is. And my friend was, like, “It's not even worth talking to you.” I was too emotional. I wanted to explain to him and give him a piece of  my mind. But at that point, I was just so happy that I made it to the top, and the rest was downhill, literally, from there — and downhill doesn't bother me for some reason. It does. But it's easier for me to do downhill than uphill. So I was, like, I know I can do it from here, I'm 100% positive. Well, that's what I thought — until I realized that we were climbing down chain ladders, half the way!

Lauren: Oh my goodness! This sounds like a very scary hike. It doesn't sound like it was anything like the way it was advertised. That's not moderate!

Brittany: It wasn’t! It was not advertised right. There weren't even pictures of the chains going down a mountain.

Lauren: That’s a real note to companies that are taking people on outdoor excursions. In order to be fully accessible, you really have to let people know what to expect.

Brittany: Yeah, I'd emailed them and everything.

Lauren: You’ve done your due diligence, for sure.

Brittany: ...

I felt like I was prepared. I was not.

But that was valuable.

Lauren: That's a really great example of … it’s literally not your fault that happened.

Brittany: I know, and it made me much more aware and more careful when I do pick hikes and do hikes, especially if it's one where I know that you can't turn back, or there's only one way out or one way in. Then I need to really do my research or talk to someone maybe that also has some sort of physical disability, that can tell me, is this actually what they say it is? Or is it any different?

Lauren: Are you also using adaptive gear when you're outdoors?

Brittany: I like trekking poles, because if I do trip or start to fall, I can catch myself and it just makes me feel really balanced. My balance just seems off in general, so I like to wear shoes that are like barefoot shoes where you can fully feel what's underneath your feet. It seems to help me a lot to be able to know exactly what I'm stepping on. I've figured out that really helps me overall. The trekking poles definitely. And just having a friend there; if I am going up rocks, I can reach up and they can grab my hand. But that's something I'm getting better at, because it used to be a real struggle for me to admit that I struggled. 

Lauren: Well, it sounds like your parents were along for the journey and your family was there with you early on when you were looking for a diagnosis. But I'm wondering how it has impacted the relationships that you have with friends and family to be sharing this with them. And to have to communicate to them what your needs are. What does that look like for you?

Brittany: It’s something that I need to work on. Communicate, communicate.

Lauren: I don’t think we go into any of these discussions presuming any of us is perfect! (laughs)

Brittany: Yeah. Because I am not good at communicating with people about my condition, like I should be.

Actually, I have an easier time communicating to strangers than the people I care about.

They know me and they love me and I guess sometimes it's just hard. If I really think I can't do something, sometimes I have a hard time actually admitting that I can't. 

Lauren: So it’s more like a difficulty with the relationship to the idea of disability or different ability, isn't it?

Brittany: Yes. My family is very supportive. And they would never question anything if I told them, “I don't feel like I can do this.” But I don't tell them. I think because I've put on this idea to them. my whole life, that I can do anything. Which I can. But there are some things I can’t, and I just have a hard time admitting that —because it took me so long to admit it, that now it's hard.

Lauren: Well, and I wonder also if it's that you need them on side. Like, there's the fear that if you tell someone that something's hard for you, or you can't do it, you need them more to be cheering for you and telling you can, rather than you can’t.

Brittany: That’s exactly it! You made a good point. I guess it is that I'm scared that if I do say that, they'll agree with me. And I want them not to.

Lauren: So at the end of the day, it comes back to you, it comes back to that identity.

Brittany: Yeah. 

Lauren: It’s tough.

Brittany: That's also why I don't tell people, when we go on hikes and stuff … I don’t tell them before the hike starts.

Because I don't want them to tell me that I shouldn't do it.

Lauren: You want support.

Brittany: I do. Like, I went on a hike in Lassen National Park, a volcano national park that I really wanted to do. And I knew I was going to struggle with it. I was with some very athletic people. And I just told them, “You know what? You go ahead. Don’t be afraid; you don't have to wait on me if you feel like I'm going too slow for your paces. It’s okay, go ahead. You're coming down the same path. I'll be safe. I'll have my phone. It'll be fine.” So they went ahead and they made it to the top of this hike way sooner than me. But when I got there, this person … they were an acquaintance of my friends … they said, “Oh, you're here. I didn't think you'd actually make it.” And I was, like …

Lauren: Thanks for the vote of confidence, yeah. Things not to say to someone who's living with an invisible condition!

Brittany: Exactly. This is exactly why I didn't want to tell you about it to begin with, because of reactions like that. But obviously my other friends were very supportive; met me with cheers, with a beer at the top and gave me one too, and said, “That's great.”

Lauren: It sounds like the reaction from other people … it's like a mix of other people wanting to advocate with you — and others sort of missing the message.

Brittany: Yeah, it's hard because I look very athletic. I look fit. Like I could hike up a mountain. People always ask me, “Are you a soccer player? You have soccer player legs.” And so to say that to people, they just look at me and are, like, “You have what? Like, what happened?” 

Lauren: It’s further proof, isn't it, that it's never anyone's right to comment on the way anyone looks, or presents. You don't know anything about a person, even if they have soccer player legs. You can't assume.

Brittany: Exactly.

You should never assume anything just because of what I look like on the outside.

They’re, like, “Is that even real?” And I’m, like, “Why would I make this up?”

Lauren: It’s tough, too. Because I'm sure a lot of the people who are, like, “Are you sure you should do that?”, or naysaying, can also be people who really care about you. But sometimes that care comes out in the wrong way, doesn't it. When you're worried for someone's safety, and you want to help them and protect them, it’s kind of hard because you want to help and protect, but also you want to encourage. And what you really need is encouragement.

Brittany: And I don't mean to make it sound like most people aren't supportive. Most friends that I go, “Whoa, that is coo!” And they get excited. I actually prefer that reaction over anything. Because then they ask questions, and they want to learn. And they’re, like, “Really, that this so neat!” I don't mean like it's a good thing, obviously. They always backtrack after they get really excited.

Lauren: Like … it’s not great, but it is kind of cool!

Brittany: They just think it's really cool. Because it's something different that most people have never heard of. Especially if they've been hanging around me for a while. They’re, like, “Oh, well, I never noticed.” But actually, a couple of friends have said, after I told them, that they started paying attention … “We did notice, once we started actually looking for stuff you told us happen.” And it just shows that when you're around people, you're not also aware of what's going on with other people just right beside you sometimes.

Lauren: Which is just a good reminder, even for ourselves, to know that not everyone's always paying attention to us, too, if we're nervous about certain things.

Brittany: It does make me feel better that they didn't notice until I told them, which meant I was comfortable enough for it to be okay if they noticed.

Lauren: Yeah, absolutely. And that's when you know that you're around people you can really trust, I guess, too.

Brittany: Yeah, but my biggest struggle has been … since I do work with students, I want them to be safe. And for them to be safe, they have to tell me about their medical conditions.

So I've tried to show them that it's okay to voice your medical conditions — by sharing mine — so that they feel comfortable sharing theirs with me.

Which has been really hard.

Lauren: That's hard. But it's also such a good lesson for you, too, isn't it. And for those kids.

Brittany: It is. I feel like they've been the biggest teachers to me because they've been so open and honest with me. Because I am their guide; I am the person that's supposed to keep them safe. When I'm with other people, we're supposed to keep each other safe, and they can't help keep me safe if I'm not open with them.

Lauren: When they don't have all the information.

Brittany: Exactly. So I'm trying to be better about giving people all the information, even when it’s hard.

Lauren: Well, now you can just refer them to this interview! And then you won't have to retell the story every time!

Brittany: Exactly!

Lauren: What I love about this is that even though this is difficult — the communicating about your condition to people — you're taking cues from the people that you're working with, the kids around you, and learning from them … and being open to learning from them is so important. You're going from someone who requires the advocacy of others, to becoming an advocate for others … it’s this nice circular … it sort of closes the circle really beautifully. In the sense that so many of us who live with chronic conditions end up becoming advocates for others, simply because we know what it's like.

Brittany: Exactly, and kids are the best because they don't question it. You tell them and they’re, like …

I remember one kid saying, “So it's kind of like you have superpowers.”

And I’m, like, “Yeah, I’ve got superpowers.” I am abnormally strong. That's why my muscles and stuff are so big because they don't relax. I am strong for what I do, for my size and what I do. I don't work out to become strong as I am, which is really cool, 

Lauren: Well, you're hiking 10 miles a day. You are workin’ out!

Brittany: I don't like body lift, or whatever it's called. 

Lauren: Yeah, you're not going to the gym. You're going outside.

Brittany: So the kids are, like, "You're really strong. It just makes you stronger. Maybe you don't have control of your muscles all the time, but you are strong.” And I’m, like, “Yeah, you're right!”

Lauren: Yeah, it’s helped you shift your perspective. Have you found yourself in situations … you sort of touched on this a little bit with the hikers in Africa … but in situations where you’ve had to validate the existence of your condition to people who needed to know about it — and just didn't understand it, because they couldn't see it right in front of them. What does that look like for you?

Brittany: I guess I have. I'll tell them, but then people forget. They don't forget, but … I’m trying to think of an example … because my condition’s invisible, people sometimes will ask me, “Oh, why don't we go do this blah-blah-blah, hike?” And just kind of forget that maybe I can't. Or maybe that will be really difficult for me to do that. So I have a hard time … 

Lauren: Those people who know who maybe aren't taking your needs into account. They've forgotten, because you've been able to do everything else.

Brittany: Yeah, we just went on a hike yesterday for seven miles. And I did that fine, so why wouldn't I be able to do this? So I had to be, like, “Well, yeah, that was okay. But I also couldn't move for two days after. And you didn't see that part. You saw me hiking. And then you didn't see the after-effects of me choosing to do that hike.” 

Lauren: This is the chronic part of a chronic condition.

Brittany: Yeah.

You saw me all happy and getting to do what I love, but you didn't see the sacrifice I had to make to do what I love.

Lauren: Yeah, absolutely. So it's about being able to communicate that to people, which is really hard. If we were all just a little more sensitive and compassionate, it would make that communication a lot easier, too.

Brittany: Yeah, exactly.

Lauren: You mentioned that it took a few years to get diagnosed, especially because you were quite young when you first started noticing things and it got progressively more noticeable. Given your experience in the healthcare system, particularly in regard to the way you identify — you’re a white woman living in this world— can you see your circumstances maybe having been different if you’d presented otherwise? If you'd been a white boy, or if you'd been a person of color, do you think your experiences getting to diagnosis would have been different?

Brittany: Yes, I think I was very privileged that I had a family that was able to take me to all these doctors. And I know that lots of people wouldn't have that opportunity. So I'm thankful for that. I definitely think if I would have been a white male, I would have been diagnosed sooner. Because especially around here … I have an amazing family … but if I had been a boy, I would have definitely been doing a lot more physical activity around the farm, helping chase cows and ride tractors, and doing all these things that I didn't necessarily do as a female in the society or the place I grew up in, That would have made my symptoms more obvious — because it would have interfered with getting things done. I don't know that for a fact, but I definitely had prejudices against me, people believing anything was wrong with me because I look so healthy and so fit.

Lauren: Because you’ve got soccer player’s legs! What do you mean there’s something wrong with you? You look perfectly healthy. Exactly.

Brittany: She’s a perfect 8-year-old girl. There's nothing wrong with her. Even as I got older, I saw prejudices against me. I don't know if that's the right way to put it actually …

Lauren: It was like pre-judgment.

Britany: Pre-judgments. Because So Dr. Morales, who I saw … actually, he was supposed to stop seeing me when I was 18 because it was a children's hospital. But because it was rare, and he knew that most neurologists hadn't seen it or didn't know much about it, he saw me until I was 25. I'm 27 now. So he fought to see me past the legal …

Lauren: Yeah, requirement. He's a pediatrician as well, a pediatric  neurologist. And the idea is that when you are 18, you go to a regular neurologist.

Brittany: Exactly. But he knew I trusted him and that I had issues with trusting people with my condition. So he saw me and we had a relationship; he knew about me and what I did, and he really cared. Most doctors do, but there are also doctors that I feel don't so much. He retired, actually, that's why I had to go to a new doctor. He referred me to a different neurologist. I was really nervous about it. And I guess I had a right to be, because I know he had to Google me. I know it. He didn't say it, but I could just feel it.

He and his nurse were whispering before I went in there.

I don't know. I already was going in there with bad vibes. And for what he knew from Google, he pre-judged my capabilities and what I would be able to do. As soon as I got in there, we started talking; he wasn't friendly. I remember he was just asking about what I like to do and all that stuff, making conversation. And I told him, and he’s, like, “You drive?! Like a car?” And I was, like, “Yeah, I drive a car.” He’s, like, "Do you think you really should be doing that?” And I was, like, “Did you just ask me if I should be driving my car?” Dr. Morales, he advocated that I if I felt that I was capable to do it, I should try and do it. But to be safe, and always cautious. We even played tennis together one day. Because I told him I play tennis. He said that was so great that I did that. And he was so glad that I was doing things I love, not letting my condition prevent me from doing that. He always inspired me to go after the things that I cared about. And then I met this guy, and he asked me everything I was doing. And he was, like, “You lead hikes?!”He was just questioning everything.

Lauren: The same thing that you've had with friends who didn't get it, too, who wanted to protect you. Who didn't understand.

Brittany: I looked at my mom, and I was, like, “We're leaving.”

Lauren: Yeah, good for you. I want to also ask you about your experience, in what ways you've seen our healthcare system work, and in what ways it's fallen short. The obvious thing here is that you were able to choose a new provider. But also your doctor had to fight until you were 25, for seven more years, to be able to keep working with you. Because otherwise you would have been shuttled off to someone else.

Brittany: Yeah. And I think our healthcare system has failed in the fact that they don't advertise conditions that aren't well known. And I don't know if that's going to change anytime soon. Because if there's not research or evidence to back up things, and help you understand it better …

Lauren: It’s all money.

Brittany: Yeah. No one's researching paramyotonia congenita, because there's no money in it. They're not going to become a famous, world-renowned scientist if they discover something about it. Because no one's heard of it. If you cure cancer, oh, you've cured the whole world, and everyone's gonna know your name.

But if you find a cure for my condition, no one's gonna know about it most likely.

Except for me and the people in my community, they'll know. But your name is not going to be on the front of a billboard.

Lauren: How do you think we change that? What’s the way to change that? Is it just to keep having conversations like this and getting the word out?

Brittany: I think so. I mean, that's why I'm doing this, and I'm trying to be an advocate more for invisible disabilities and just physical muscle disorders in general. I think, just being heard. A lot of people that usually end up making a difference for certain disorders like mine are people who have it like they go and they become I'm going to become a doctor so that someone who understands actually researches is usually someone who, who's been through something similar, or the people that are out there making change for people like me and you, because they know. But we can't expect everyone with an invisible disability to go and become a doctor.

Lauren: Everyone has a different path, absolutely. But the fact that you're also talking to kids about it … there might be a kid you come across one day who's got the same condition, or gets diagnosed because you're telling them about it. You just never know, do you.

Brittany: No, exactly. Or I might tell someone, and they think it's so interesting that they decide one day to go and research it. I just can't count the times that I've been introduced to the dentist or just my normal family care, and they admit that they had to Google me before I came in.

Lauren: It doesn’t give you a great deal of confidence that they can take care of you, does it.

Brittany: Yeah, it’s, like, I don't trust you to take care of me right now. So it's just hard. 

Lauren: Like, if you just learned about that now, are you gonna be able to look at a bigger picture long-term, yeah.

Brittany: So I haven't figured out … like, people of my condition can't go under general anesthesia. It’s potassium-based and temporarily paralyzes when we wake up. Which, you know, would scare people if your patient woke up and was paralyzed for hours to days.

But if an emergency happens, how do I let people know that? I haven't figured that out yet.

Because I can't even really wear a bracelet. A lot of people with certain disorders wear bracelets that advertise it. But if someone saw it and read it, and it said my condition on it, it wouldn't be enough for them; if I needed immediate action, they wouldn't recognize it to be, like, oh, I can't do this for them.

Lauren: This is like a failing of the healthcare system, but also of our human state in that we're not curious enough about other people's experiences, right. And for you, it's something where you have to just very clearly be, like, “No potassium,” so people will know that right away. Or, “No EpiPens,” because that's gonna make you seize up more. That’s the kind of thing that unless people really understand, it's something very outside-of-the-box for them. This comes down to compassion, caring more for other people, being more interested in what other people are going through, and being able to accommodate the expansion of our thinking. In that there are things beyond our imagination that exist in this world. And this is a great example of that, for some people.

Brittany: It is, and it's made me even a better person, because I'm more aware of other people and try to ask questions and make sure that people are comfortable. Because I don't ever want to assume anything about anyone. Even when I'm going on hikes with other people, I'm constantly checking in — because I don't know everything about them. I wish people would do that for me. So I'm gonna do it for you.

Lauren: And it sounds like you maybe you haven't had that enough. There's a good note for the people in your life to kick it up a notch!

Brittany: And, honestly … I mean, it's not my fault … but I'm partially to blame because I haven't probably supplied some people with accurate information I need to support me.

Lauren: But that's not the whole story there either. I think that these kinds of relationships go both ways, don't they. It’s your burden to communicate, but it's also theirs to to listen. 

Brittany: Exactly, yeah. 

Lauren: And to ask questions. I like to close up my interviews with a couple of Top Three Lists and I think you'll give very heart-centered answers here. I'd love to get your Top Three Tips for someone who maybe is in this invisible condition world with us. Maybe they suspect something's off, or maybe they've gotten diagnosed; maybe they've got the same diagnosis as you. What would your Top Three Tips be for for a fellow Spoonie who's going through what you're going through?

Brittany: Well, one … I wish I would have known sooner … if you do feel something off within you, or you just know that you might be different than other people … and everyone's telling you you're not, or that there's nothing wrong, or you don't have this disorder … keep advocating for yourself.

Even if you’ve been to 8 billion doctors and they've all told you there's nothing wrong, but you know for a fact there is … keep asking questions.

If you can, keep getting them to refer you to someone new. I know that's not always easy, because doctors are expensive and insurance doesn't always cover it.

Lauren: But keep pushing and keep believing.

Brittany: Yeah. Because if you don't keep telling people, if you just eventually give up and you agree with everyone else … you’re not helping yourself, but you're also not helping future people like you. We have the science now. If you find the right doctor, they can figure out what's wrong. It’s just that you have to find that doctor that's willing … that either has the knowledge, or is willing to put in the extra effort to research and help you figure it out.

Lauren: Look for your Dr. Morales!

Brittany: Look for your Dr. Morales, because they'll fight for you. It's just that you’ve got to find that doctor that's willing to fight for you. They are out there. So that would be my number one advice. And number two … if you want to do something, even if people tell you they've heard about your invisible disability, and they have these preconceived notions of what it's all about, and they tell you you can't do something, but you think you can … you should do it. And even if you're not sure you can, you should try. But be safe. Always go after the things that you want.

Lauren: Maybe bring a buddy along, or something, for support. So you know you're safe.

Brittany: Exactly. Don't do it by yourself. Bring someone you trust with you. Make sure that … if it's something like I had, where there's not much information, and it's hard to figure out how to manage it, if it's something really scary that you're not sure you should do … maybe wait till you've learned enough about your body and your disorder before you try it.

But once you feel confident and you know how your body is going to react to certain things and how to manage your symptoms, try things!

Don't let your disability as a lot of people are going to call it, or your condition, your superpower, whatever you want to call it … don't let it prevent you from doing the things that get you excited. Because it will if you let it. It’ll hold you back if you let it, so don't. And my last one is: Don't be afraid to tell people about it. That was my biggest struggle. And what I'm constantly working on. Don’t be scared to stand up for yourself and be, like, “Look, this is what I'm struggling with. This is my condition. I need your help …” if you need help. Or just if someone's being ignorant, set them straight. Because it's a learning experience. And most people, the majority of people, are going to be understanding and supportive. You definitely get the people that aren't. But it's a good moment to educate them. And maybe next time, if they meet someone similar to you, they'll be better.

Lauren: Yeah, beautifully said. You mentioned making sure that your condition doesn't stop you from doing the things that make you happy and that excite you. What are the Top Three Things in your life that give you total, unbridled joy? I want to know about things that you're unwilling to compromise on. So it can be guilty pleasures, secret indulgences, comfort activities. Three things that there's no way you're not gonna indulge in, because they give you life.

Brittany: Okay, I'll end with my most, most favorite. Potatoes are one of the three things. I love potatoes — fried, french fries, stuffed, baked potatoes, you name it. I love potatoes, and I shouldn't eat potatoes. They made me lock up and they make me fall. But I love potatoes. So if I know that maybe I'm just going to Netflix and chill all day, I'll have me a big stuffed potato. Because, you know, I'm just gonna lay in bed. So I haven't given up potatoes, even though my body says I should. That's my guilty pleasure. Top three is potatoes. I'm just smart about it. I only eat them when I know I don't need to be runnin’ around from wolves or something!

Lauren: You can assess the risks in a situation, too. Where you can go, all right, like you said, you know you're going to Netflix and chill that day, then you can have those potatoes. 

Brittany: Yeah, exactly. Number two is, I'm an adrenaline junkie. And that bad because adrenaline makes me lock up. I love to do things that scare me a little bit and just get me excited about life. I like to try new things. Like I said, don’t let whatever condition you have keep you from trying new things. So my most recent … because I'm an adrenaline junkie, I found my number one thing I've ever done … just recently, in the last year, I became scuba certified, scuba diving. Which I was really scared about, because I didn't know how being underwater … like, that much pressure is a lot of pressure … how it would affect my body. So I just did all my research. I had an amazing instructor who knew everything in and out. I even sent him scientific articles, anything I could think of. I went in prepared.

And it was life-changing, because it is the only time in my life that I've ever felt no tension.

I don't know how to explain it. But I was underwater… 

Lauren: You’re fully supported by the water, too.

Brittany: Yeah! That’s what it's like. I was suspended. I couldn't feel the weight of my muscles. And I know that sounds crazy. But it's like my muscles are like weights that I'm carrying around.

Lauren: Well, because you're able to float and relax a little bit when you're in the water. It is a different experience. Gravity has a different meaning, doesn’t it?

Brittany: Yeah. It was just like I was free. I've never felt so free. Scuba diving, you need to be really, really slow. The slower the better, the slower the safer you are. So it didn't matter; I could go at absolutely snail's pace and there was no pressure to go faster. If anything, there was pressure to go slower. And I was, like, this is perfect. If I could have cried underwater, I would have. But then my goggles would have got all messed up!

Lauren: But also, you're a naturalist. So for you, this is an opportunity to be even closer to other parts of the natural world.

Brittany: It is, and that's leading me to my top number one thing — and it’s nature. I could never ever give up. It's my home, it's my safe space. Even if I have fallen 18 times that day or my whole body hurts.

Or if I just go out for a short hike, or go sit by a creek, it all melts away.

So anything that I can do that gets me closer to that — whether it's underwater with coral reefs, or, you know, working with squirrels in Africa — nature is my home. Which is really hard for someone with any kind of physical disability; that's a hard thing to have. Because it's not always set up for people who aren't necessarily …

Lauren: Who aren't perfectly able-bodied people. The world is set up for able-bodied people. So when you have any kind of physical condition, it can be a roadblock, Especially when you're not given advanced directives, advanced instructions. Like, this pathway might be a little bit more difficult. Or, that boulder might be more difficult. Things like that. So we need those cues.

Brittany: Exactly. And even though it's a place that’s sometimes hard for me to get to, or have access to, I have to have it. It’s what I need for my mental health, my physical health. Even when sometimes, I have to assess the risk. And sometimes the risk is worth it. Because if I had to give it up … say I never went and tried to hike or do these things, because the world and society and my muscle disorder told me that I shouldn’t, I would probably be so unhappy because I wouldn't have the thing that I love right there with me 

Lauren: This is the thing that gives you joy. 

Brittany: It’s my joy. My dream … I do want to be a better advocate. My next adventure that I hope to do is, I would love to hike the whole Appalachian Trail. But have it as a advocacy platform, like, the whole way tell people about my condition.

Lauren:  I love that. What a great idea.

Brittany: It’s supposed to take six to seven months. If it takes me a year, whatever. If I have to do it in month increments, take a break, whatever. I just haven't figured out how to do it yet. 

Lauren: YouTube. I think it's time to start a YouTube channel.

Brittany: ...

Yeah, I haven't figured out how to do it safely for me yet.

I'd have to find someone who's willing to ride along for up to a year. But I think it could be really eye-opening for people, and it would be a good chance for me to share about visible disabilities, different muscle disorders. And nature, because I’d be surrounded by nature the whole time, so I can educate people in all three. All things that are really important to me in my life.

Lauren: That’s gorgeous. Well, is there anything else you'd like to share with us, Brittany?

Brittany: I know there are a lot of people who listen to this podcast who do have invisible disabilities. And so I just want everyone to know … you’re a badass. You can just do what you love. And don't let anyone tell you different. And if they do, they're not worth havin’ around. So I just think that's important. And hopefully, I'm gonna send this out for my friends and family who I have trouble telling things to. Maybe this will help a little bit.

Lauren: To understand where you're coming from, for sure. Can you tell everyone where they can find you, as well?

Brittany: Yes. If you want to find me on Instagram, it’s @wildlife_brit. I use it as an outlet to spread awareness about environmental conservation, and also a lot of travel — because I love to travel, too. So if you want more nature and wildlife facts in your life, and hopefully soon I’ll add a lot more awareness about invisible disabilities, you can find me there. 

Lauren: So, Britt, it has been such a joy speaking to you today. I'm really glad to have learned more about your condition. And I encourage everyone to do some more research, find out more, and to follow you and follow along on your adventures. Because it's another great way to experience the natural world if you haven't got it on your doorstep. I thank you so much for being on the show today, and sharing your story so vulnerably.

Brittany: Thank you! I really loved doing it.

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