Transcript

Lauren: All right, guys, thank you so much for joining us. I am here today with the founder of Fight Like A Warrior, Alexa Chronister. She's one of the younger advocates that we've had on the show. She's also the recipient of a WEGO Health Award, which is how we connected. It is such a pleasure to have you on the show. Alexa, thank you for joining us.

Alexa: Thanks so much for having me! 

Lauren: Oh, absolutely. We’ve been meaning to do this for a while. And I'm glad we’ve finally gotten around to doing it. So we wanted to give you a chance to tell your story, and also to talk about how you got into advocacy. But let's start at the very, very beginning. Can you tell us when and how you first realized you were sick, what diagnosis you got? And what steps you've been taking to control your health?

Alexa: I guess my story technically started in childhood, early childhood. I had just some weird issues going on that we didn't really realize was anything until later. It was kind of just like, oh, that's your body. I was in a stroller longer than other kids. And no one really understood I couldn't walk as far, I broke things really easily and injured myself really easily. I was taken to a variety of different doctors, and I was eventually diagnosed with hypermobility syndrome, which is semi-common, I guess, in children.

Lauren: Is it? I always thought that was like the precursor to Ehlers-Danlos?

Alexa: I mean, yes, but I guess more common then than eventually getting that diagnosis. 

Lauren: Sorry, I’ve totally gotten you to the end of the story before you went and told it. Go for it!

Alexa: Growing up, I went to physical therapy often, off and on. I wore different braces to help support my joints, I had orthotics. I just made life adaptions and worked around any issues. It wasn't anything too severe, that really altered my life. But when I was going into my senior year of high school, I started to experience more symptoms and different symptoms.

My chronic pain became way more intense and different. I recognized it as such, and it was impeding my life a lot more.

And then I also started to develop POTS symptoms, which was obviously a little bit alarming and something that I hadn't experienced previously. Initially, like many people, I went through a period of not being diagnosed, and misdiagnosis and a lot of different issues. So I started with an exercise regimen and physical therapy, which was eventually modified because it wasn't really what fit at that moment. Heating pads and over-the-counter pain relievers and things like that helped me get through. But in the end, I modified those things. I was diagnosed with Ehlers-Danlos Syndrome, and POTS, which is short for postural orthostatic tachycardia syndrome. And I improved with those improved treatments and medications to kind of where I am today.

Lauren: Wow, so you were lucky that you got a diagnosis fairly early on, considering. Because a lot of people who have symptoms of both of these illnesses don't get diagnoses until they're adults. But it sounds like you got them when you were a young teenager?

Alexa: Yeah, I guess maybe, from childhood, having that hypermobility syndrome diagnosis is, I guess, telling of how long it can take to get a proper EDS diagnosis. But also, that was really brushed aside in my life before that, and I was on the hunt for what was going on. So it took a lot of self-advocacy. And for my parents to teach me that, and give me a voice to really get connected to where I needed to be, and tested for these conditions.

Lauren: And are there specialists in your area that are able to treat you for these conditions as well, particularly for Ehlers-Danlos? So many people struggle to find someone who actually knows how to treat them.

Alexa: Ehlers-Danlos Syndrome is really complicated, just because it affects so much, so many different systems. I think most commonly, people are kind of just seeing a bunch of different specialists and trying to figure out how to manage that themselves. There's no real person to go to, to treat that disease as a whole. There are some clinics I've heard of that specialize in that; I haven't been treated at one of those. But in my immediate area, not really. Although there are some physicians or specialists for different things that have treated patients with EDS in the past, and they're comfortable treating them. So that's what I looked for in my primary care physician. But when I was really looking for that initial big intervention, to get my life a little bit back on track, I went to Philadelphia — which is not extremely far from where I live, but definitely not local.

Lauren: So you had to go to a larger metro area in order to access specialists at the hospital there?

Alexa: Yes. I think that it has increased my confidence in terms of self-advocating. It can definitely be hard. People fall into the trap of being, like, I don't want to be that person, or, I don't want to be like that difficult patient. I definitely think that it's taught me to brush that aside, and put myself first while still obviously respecting the professional that I'm seeing. But those skills are definitely transferable to so many other aspects of life. So, yeah, I feel grateful.

Lauren: I think it certainly makes a difference. I talk to lots of different people. And it's the young people like you who I am always the most impressed by, because I feel like there's a level of maturity there that just doesn't exist for your typical 15-, 18-, 20-year-old. And having gotten to know you, I think that's certainly true! So can you tell us what a typical day looks like for you as you're balancing the demands of work and life, while also managing your symptoms as they come up?

Alexa: I guess, especially right now, I don't really have a complete typical day. I actually graduated from college a couple of months ago. 

Lauren: Congratulations!

Alexa:  Thank you. Yeah, one semester early, which is great. 

Lauren: It’s awesome. 

Alexa: But then I was left with this semester, so that was a little bit different. So, not necessarily a typical day. I think many people could relate, with a chronic illness. There's not necessarily one typical day; it can always look different and certainly surprise you.

But one thing that stays consistent is that I make time to prioritize myself and my health, more so now than I did initially.

I think that's definitely something that takes a little bit of time to learn. And that sometimes you have to learn the hard way, when your body kind of punishes you a little bit. But for me, a lot of it is sleep, and that can be hard, especially in a busy college life. And making time for exercise is also really important to me and my body. Some days, I have very few symptoms, which is great. And some days I feel completely unwell and can't really do much, and I kind of adapt around that. But there's so many days in between, and I'm really lucky to be on the great minimal symptom days, which are manageable symptom days. Which is not how I started, and it's something I'm thankful for.

Lauren: So it sounds like you've been on a learning curve, and you've gotten to a place where you're managing, but you're okay with being inconsistent, if that's the way your body has to be on a certain day. But you've created consistent management tools in order to get your body to this point.

Alexa: Yeah, for sure. Definitely. Being able to be adaptable, I think that's really important. Knowing how to manage it, and being consistent in that, kind of provides that consistency. Yeah, it kind of fluctuates.

Lauren: Totally. So you mentioned, when you were younger, looking for those diagnoses, and spending a number of years digging into your your health record and looking for specialists. I'm wondering whether there were points along the journey where you were confronted and forced to justify or validate the fact that you had an invisible illness, that no one else could see. But that you could feel. Have you had experiences like that?

Alexa: I guess, luckily, I haven't had too many adverse experiences like that. I've been lucky to have people around me that understand and take what I'm saying seriously. But especially when I was initially diagnosed, there was a lot of misunderstanding, I think, amongst family and close friends. Just because it is something that you can’t always see. Mine can sometimes be visible. But a lot of times they're invisible, which is hard for people to understand, certainly. I think a lot of people go through that. But for me, justifying that really just looks like me having an honest conversation and trying to educate those people in my life who care enough about me to listen and want to refine how they go about in the world. Or what they think about what I'm going through. I'm kind of like what my diagnoses look like in my life. But the thing that stands out to me is that I am often forced to justify my illnesses when at the doctor, which is a challenge.

Lauren: Even now, still?

Alexa: Yes, I think in my EDS diagnosis, which has just been weird. I don’t know why this happens. Normally a doctor will see that that is on my record, or that that might relate to a problem that they're seeing me for. And they will ask me to perform little hypermobility tricks — nothing extensive enough to signal a diagnosis, nothing that they normally have the credentials to diagnose. So it's kind of odd.

Lauren: It's like they're questioning all the results on your paperwork and all the diagnoses on your paperwork from the minute you go in?

Alexa: A little bit. I think they're skeptical of that. Also, sometimes what I think happens is, they're nervous because they haven't treated a lot of patients with EDS, and they want to say something that makes you feel, like … oh, this person is knowledgeable and is able to treat me. Especially when meeting someone for the first time, I feel like sometimes that comes out in that way, and they don't really mean it to. And I have to remember that.

But I've also gotten better at speaking up for myself, because it can be a little bit ridiculous.

It doesn't really serve a purpose. And feels not great to the patient. So I try and have those conversations when I can.

Lauren: I think that's really important. The fact that you're talking about having those conversations, it's an aspect of self-advocacy, isn't it, to be able to be, like … okay, I know you're trying to test me here. But I know my stuff and I know my body, and I know it better than you do, which is super important.

Alexa: And your specialty isn't really in this area. So, you know, trust this renowned physician who has provided this diagnosis on paper, who's a geneticist, and let's move on.

Lauren: You're very calm about it. I feel like a lot of people in that position, it's easy to get worked up, it's easy to have a fight about it. But I guess you've been through it enough, you've been doing this for so long, you've been groomed from a young age, right … to have sort of a distance from it. That you can apply what you know, remain calm. not take it personally,

Alexa: For sure. And I've certainly had my angry moments, my frustrating moments; I’m not gonna say that I don't, or that it still doesn't happen — because it can be the worst feeling. But I think finding that voice is so powerful in calming that down. And feeling like I can get my point across better when I'm coming from that calm, informed, genuine place. And improve not only my experience, but the experience of the patients they have yet to see. Which is really important to me, too.

Lauren: Absolutely. That’s a really good point. I never thought about it from the perspective of keeping the doctors calm for everyone else, which is a very good global perspective to have! We're talking right now about prejudice that you've experienced. Do you think you've also experienced privilege in the healthcare system, particularly in regard to self-identity? In other words, because you're a white woman, can you see your circumstances being different if you presented otherwise?

Alexa: Yeah, for sure. I think being a woman in the healthcare system isn't always putting you in the best situation.

Lauren: Nope. We’ve got plenty of studies to show us that.

Alexa: ...

Yes, I think we're often told, “This is in your head.” Or not initially taken seriously. And I'm not immune to that; that happened to me, and kind of spiraled my misdiagnosis period.

But I think being in the position that I am, and coming from whatever background I come from, and my family, and like I talked about before … just having the ability to have parents who are able to advocate for me, the access to resources and research, and the ability to see the physicians that I need to, and have access to the treatments that I need to, and have the insurance coverage that I need to, to really optimize my health and get the best care that I can … is an incredible privilege that I don't want to take for granted, because it's a major issue in the world, in this country. Even getting down to the nitty gritty, seemingly, of being able to have a flexible schedule, or being able to have transportation to get to appointments, is huge. So I definitely think that there's privilege in that, and there's so many studies about race and gender, and all of those factors within healthcare. So, certainly ups and downs. But in general, I feel that I've been privileged in the healthcare system to get the care that I have.

Lauren: And you also address some of this on your platform, which we're gonna get to shortly. Before we do, I want to ask, given what you've experienced and what you've seen from others around you … in what ways are you seeing the health system working for patients? And in what ways do you see it requiring improvement and maybe falling short? Aside from these issues of privilege that include race and gender, where is it working? Where isn't it working?

Alexa: Sometimes we complain a lot, especially in this space. And there are good things about the system to recognize. I definitely think with the Internet, and the fact that it's more widely available, is awesome in terms of electronic medical records, and different doctors being able to see your records from other places, and you as a patient being able to have access to that — and really feel empowered to know what's going on in your body and take control over that. And be able to use the Internet to seek out resources and research and really learn about your condition, which is great. And even down to the online portals, being able to have that ease of communication with doctors and easily be able to refill a prescription. There's tons of amazing physicians within our system, which is awesome, to provide great care to a ton of people. We certainly invest a lot of money into our health care system; benefits-to-investment ratio could certainly be debated. But there's no doubt that there's been a lot of great innovation and achievement that has come from that, which is great. There's drawbacks to the system as well. I talked about my privilege in access. And I think that's a huge issue — access and affordability to great care is a problem. Everyone should be able to take care of themselves and treat their health in the best way possible, which is not always the case. And as much as the Internet provides a way for patients to be empowered and take control of their health, we don't always necessarily provide patients with the resources that they need to self-advocate or to truly understand their condition and their body. 

Lauren: Very true. Often you're handed a pamphlet, but how much does that actually tell you.

Alexa: Or they’re academic and they're not meant for really public consumption, or there's misinformation online.

So it can be really tricky to navigate, as much as the Internet has really empowered patients to take control of their health.

But also in a chronic illness vein, the system isn't necessarily designed for complex chronic patients, and it can definitely be a struggle. I was talking about EDS having all those specialists and being the one person who’s managing that for yourself is definitely a challenge.

Lauren: Is that something that you hope for the future, at least with EDS care, or for patients who are dealing with complex chronic illness, as you say … would the future be to centralize that care and create care centers where you didn't have to go to your PT here and your cardiologist there, but that they'd all be in one place, based around a person's general diagnosis?

Alexa: I don't know exactly what that would look like. But I think being able to treat patients holistically and really looking at the entire person, and all different aspects of their health, is so important. And communication between those specialists is so important. So I would definitely hope that we could continue to make strides in that area for the future.

Lauren: I think that's one way to begin to move forward. And I do know that there are organizations like The Ehlers-Danlos Society that are trying to do that, particularly with regard to standardizing diagnosis structure, right, as well as treatment structure. So it's exciting that things like that are happening. But it is still a long road ahead. Because I know EDS in particular is so complex, there's so little we know about it, there's not enough funding for research. So in some sense, a lot of that money that you're talking about that goes into our healthcare maybe needs to go into the research as well as the actual care itself.

Alexa: Research is so important, and especially with EDS and POTS and so many other chronic illnesses. It can be hard to navigate or care for yourself, because there's just not enough out there. And I think because of that, too, there's a lot of physicians who have never even heard of these things, or know very little — which makes it hard for them to treat you effectively. Or if they're treating you for something that's seemingly unrelated, it's harder for them to catch something that may actually be related.

Lauren: One of the issues that we're talking about in terms of access … I also wonder about this whole thing in terms of knowing that some of the better specialists are going to be in urban areas or metro areas. Perhaps if we encourage more doctors to train in certain specialties that are underserved in more rural communities, that would also increase access to people who are living in those communities, right?

Alexa: Yeah, for sure.

And not everybody can afford to travel to receive the best care possible. Which is, of course, another challenge, let alone affording the actual care itself.

It can be a lot to travel to get that care. Some people will travel just a short distance; like me, I probably travel about an hour. But some people travel multiple hours and end up staying overnight or staying at hotels, which really complicates things.

Lauren: So let's talk about Fight Like A Warrior. Can you tell us how your advocacy platform was born, and about the work that you guys are doing currently?

Alexa: So when I was going through that period of not being diagnosed and misdiagnosis and struggling with that, I turned to the Internet to see what was going on with my body. But I also went to social media. And I found the chronic illness community there, which is seemingly hidden from the rest of the world; I never really tapped into that until I really went looking for it. But I was so glad that I found that community, and connecting with those individuals was so powerful, and being able to feel like I wasn't alone. And after I got my diagnoses … I don't know anybody, or I didn't know anybody in my personal life that had EDS, or that had POTS, and through this community, I feel a part of something so much greater. I feel completely less isolated. There's so many other people either fighting similar battles or fighting the same condition. But anyway, that inspired me to create a program that we still have today, called ‘Cards for Warriors’. It really started out with just me and a few volunteers who were people that I had met through this online community, who wanted to help. And we made handmade cards.

Lauren: How old were you when you did this, by the way? How many years ago was this?

Alexa: I think I was 18?

Lauren: So it was just four years ago.

Alexa: So we started making cards together and sending them to fellow warriors. Probably in the beginning, it was a bunch of people that we knew or were connected with. But it really started to grow, where people were nominating people for cards, whether they were friends or family members, or parents — which was also kind of an unintended consequence, almost, of the project. But something I think, is really important, because sometimes we don't know what to do when someone is sick in our lives. We don't necessarily know what to say. But to send someone a card from someone that you know kind of gets it, is really awesome. And I think that both parties, both the people nominating the warrior and the warrior themselves, really appreciate that. To receive a card from somebody who is also fighting a health challenge themselves is really genuine, and I think means a lot. It's something physical that is going to them, and provides a lot of hope. So that was great. Today, the project still continues; we have sent, I think, almost 1000 cards, which is really awesome.

Lauren: Amazing. And you just started this from your bedroom kind of thing?

Alexa: Yep. Completely. It really turned into something I never imagined. And a really incredible, rewarding project. We've sent the cards all over the world, which is also incredible. I saw the positive impact that that was having, and how much that really meant to people.

People sent back pictures of them with their cards, or messages saying how much it meant to them. That really made a big impact on me.

I wanted to expand that and do something more, and I thought more about my own experience. At this point, I had my diagnoses, was beginning to be on that path of navigating though. But also finding my new normal and thinking about what I have wanted to have in place when I was going through those initial challenges, and from that arose Fight Like A Warrior. Which would not have been possible without all the incredible volunteers that worked on our ‘Cards for Warriors’ project. One of the first people that I met on the community was Sara Cohen, who is incredible. She has been with ‘Cards’ since the very beginning. We actually don't live too far from each other. So we've gotten to see each other and hang out.

Lauren: So you met through the cards; you didn’t know each other before then?

Alexa: Yes,

Lauren: Amazing. It’s created a network for you.

Alexa: Yes. I met her through the online community. And she joined ‘Cards’ with me and helped make it possible, which is awesome. Now today, she's still with Fight Like A Warrior; she's followed it the full way through and been a complete backbone to everything. So it expanded to Fight Like A Warrior, where we continue ‘Cards for Warriors’, but we really expanded our mission. We're looking to unite people, as we kind of did before, but putting more emphasis on that, to empower people and talk about self-advocacy, and believing yourself and trusting yourself, and also self-advocacy. But also kind of working on different awareness and advocacy campaigns to improve the lives of warriors today, and the ones yet to come. We also want to serve as a place for all the stakeholders in this realm to be able to talk and engage with one another. Because we all have the same goal. So whether you're a caretaker, you're fighting an illness yourself, you are a health professional, or you're just someone who's passionate about people's health, and people receiving the best care that they can … this is a place for you to engage and get involved with what we're doing. And we really want to be a platform where people can speak, and we want to elevate people's voices. We do that through a blog and through our social platforms, which is one of the best ways that we connect with everyone. That's a little bit of what we do.

Lauren: It’s amazing. And you're continually, as you say, creating new advocacy projects and avenues. I know right now you're working on the ‘We Are The Vulnerable’ campaign with the founders of that, which has arisen during this Coronavirus crisis. And constantly reaching out hands and partnering with organizations that are also bringing awareness. And that's so important. What I think is super cool about what you guys are doing is that you're by young people, for young people. And while it includes the wider chronic illness community, it is that group of patients that you mentioned earlier, those post-pediatric, pre-adult care patients who get forgotten and brushed over in the medical system, and you're speaking so directly to so many of them. I think that's very powerful, because these are also the people who have influence on social media. So you're using it for good, and it's very, very exciting. 

Alexa: For sure. Thank you. I also wanted to give kudos to Jaelin Palmer, because she has done so much with the ‘We Are the Vulnerable’ campaign, which is soon to launch. We’re very excited about that and she has just been incredible and completely changed our advocacy efforts and our awareness campaigns, and really been there for all the work that we've been doing.

Lauren: Yeah, we love her! Tell us also about the WEGO Health Award that you won.

Alexa: Yes. WEGO Health Awards are super exciting. We won Best in Show/Community, which was really fitting, I think, for what we set out to do.

We're constantly trying to create that sense of community online, and be a place for everyone to come to and feel a part of and not have to feel isolated, and feel a part of something, which is awesome.

So that was an incredible experience. And being able to go to the WEGO Health Awards and meet everyone, including you and all the other incredible advocates, was just an amazing, amazing experience that I'll never forget. And it was awesome to really get into WEGO Health a little bit more, and all the awesome work that they're doing.

Lauren: Yeah, absolutely, because it's what connects us all, too, which is really cool. So as we slide into the tail end of this interview, I like to ask a couple of Top Three Lists of my guests. And to start things off, I was wondering if you could give us your Top Three Tips for someone who maybe already has a diagnosis. Maybe they're waiting for diagnosis and something funky is going on. People who are in this world living with invisible chronic conditions, what do you recommend for our fellow Spoonies?

Alexa: I definitely think listening to your body is important. And something that I took a little bit of time to learn, and is especially important when you're trying to figure out what exactly is going on. I think tracking your symptoms or writing in a journal, and just getting more in touch with what your body is going through, and noticing different patterns, can be super helpful, and really powerful in arming you with the knowledge to be an expert on your body. For when you eventually go to a doctor, and try and figure out what's going on. Which can also help you get there a little bit faster. But also tying into that, and something that we've obviously talked about throughout this conversation, is self-advocacy — not being afraid to be your own best advocate, not being afraid to be that person or that challenging patient. Respecting and listening to your physician, and all the amazing things that they have to say, but not being afraid to do your own research or question something. Because that only shows that you're engaged and that you care about your own outcome and your health, which is super important. 

Lauren: And if they don't work with you, move on to the next one, right?

Alexa: Right, yeah! Seek a second opinion, a third opinion … not giving up on yourself, and continuing to be that advocate for yourself.

Because if you're not for yourself, who is going to be?

So I think that that's super important. And kind of going along with that … you definitely can't do it alone. So making sure to surround yourself with supportive people who believe you and care for you and want the best for you, and are just really, really genuine. It can be a challenging time when you're going through that period of trying to figure out what's going on. And certainly navigating life with chronic illness, and even how to manage that transition or those life adaptations can be super, super overwhelming, to say the least. So definitely cutting out or letting go those people who really aren't the best for your life at that time. Or just putting some distance there, and really making time and making your inner circle full of people who really care for you.

Lauren: I think that's really good advice. So, the next Top Three List is Top Three Things that give you, Alexa, unbridled joy, that you're not willing to compromise on in your life, despite these potential lifestyle changes that you've mentioned. So this could be Top Three guilty pleasures, secret indulgences. It could be comfort activities when you're in the middle of a flare. What are the three things that you turn to for joy?

Alexa: I think, especially during a flare, one of the best things is binge watching. I think a lot of us Spoonies could relate to that. Love some Netflix, of course; love watching The Office and Parks and Rec. I love watching funny shows that take my mind off of whatever's going on, which is awesome. And I've also rewatched them.

Lauren: Same! Those are the two I keep going back to.

Alexa: Me, too! Those I very highly recommend. So just rewatching those or watching your favorite movie is always the best. I love that. And for me, too, I also really like to be creative. I'm not traditionally super talented in terms of art. But even Fight Like A Warrior provides an outlet for me to do some sort of creativity, whether it's graphic design, or social content. But I also like to do DIY things, or just be crafty in some way. Making time for that is so important to me. And finally, I think friends and family. Making time for connection. I think connections are so important and really so meaningful in life and not something that I'm willing to sacrifice or compromise on. And if I am unable to make that time in person, using FaceTime or video chat or some other tool, social media, to stay in touch with people is super important. Because you can't go at it alone.

Lauren: Can you tell our listeners where they can find Fight Like A Warrior and ‘Cards for Warriors’, and follow along and read all about everything on the blog?

Alexa: Yeah, for sure. Our website is FightLikeAWarrior.org. You will find all of the content that we offer there, as well as link to where you can find us on all different social media platforms. We're most active on Instagram, where we're @FightLikeAWarrior. And you can find ‘Cards for Warriors’ on Instagram as well @CardsForWarriors, so super easy. And then on Facebook, we are at Fight Like A Warrior Project. And on Twitter … we recently created a Twitter, so you can check us out there. We are @FLAWarriorOrg. So check us out. But you can also find everything on our website.

Lauren: So, TikTok’s next then? Great! And what is the future of Fight Like A Warrior?  Is it continuing to do these advocacy projects and bring awareness to different disease groups, and share stories?

Lauren: We definitely want to continue to expand, to reach more people and really serve as a place to elevate people's voices — while continuing these advocacy and awareness projects and doing the projects and initiatives that really matter to our audience. And also continuing to bring those outside, seemingly outside, not outside people in — like healthcare professionals, and caretakers — and really make them part of the conversation, which they should be. We have some exciting ideas in the works to continue to fulfill our mission, that we're excited about, and continuing to just build our community.

Lauren: So you've graduated college and you're straight into running your non-profit. This is your full-time job now, huh?

Alexa: I'm still hoping to actually go to law school. I want to focus in health policy after graduation, but I think I'm taking a year off, so we’ll see. But yeah, very excited.

Lauren: I’m super excited for the future of Fight Like A Warrior and ‘Cards for Warriors’.

Alexa: It's great to talk with you today.

Lauren: You too! And thank you so much for being the most patient with me. It's been such a pleasure having you on the show, and we look forward to seeing what's next!

Alexa: Thanks. Thanks for having me.