Invisibly Allergic with author Zoe Slaughter

[00:00:01] I want to talk to my fellow nurses for a moment because this is important. I just finished reading Speak Up Start Now by Rosa Hart, RN, SCRN. And I'm telling you, for once someone said out loud what so many of us feel every day in healthcare, that we're waiting to feel ready, to feel confident enough to believe that our voices matter. This book shuts all of that down in the best possible way.

[00:00:26] Rosa doesn't just write from theory. She writes from lived experience at the bedside, in leadership, and in rooms where real decisions are made. And she reminds us, page after page, that imposter syndrome doesn't get the final say. We do. Speak Up Start Now gives you the tools to step into your voice with the confidence healthcare desperately needs from us.

[00:00:50] I'm recommending this book to every nurse, every new grad, every leader, and every person who's ever felt like their ideas weren't enough. Because the truth is, healthcare can't wait. And neither can we. The change we want to see starts with our voice. Your voice. Do yourself a favor. Get this book. Read it. And then go speak up. And start now. Speak Up Start Now by Rosa Hart, RN, SCRN. Available now.

[00:01:21] Hello and welcome to the Nurse Rosa's INsights. I'm your host, Rosa Hart. And today I am joined by Zoe Slaughter. Thank you so much for being with me today. Yeah, thank you for having me, Rosa. I'm so excited to be here.

[00:01:46] Well, you belong here. So the Nurse Rosa's Insights Podcast is where I talk to people who are healthcare stakeholders. And that can be any human person because we all have a stake in healthcare. And our experience really informs our perspective. And so I really appreciate you taking the time to be with us today. So tell us what you are working on right now and how life has bent into healthcare.

[00:02:17] Yes. So I guess I kind of have a complicated past, which probably everyone does with healthcare. Having your own stories that tie in with the healthcare medical experience in the U.S. But yeah, so I have a peanut allergy. It's anaphylactic. And I actually used to work in healthcare. I worked in segregation for a while. So I have somewhat of an understanding from the healthcare side of the claims and like bodily injury kind of trauma coding of claims.

[00:02:46] But now... Can you just say that really clearly again? Because it sounded like segregation. And I just don't want to assume that everybody knows. And I can just kind of like cut into that. Yeah. If you could start back with, I worked in segregation, which is... Yes. I think that would be just helpful to clear up the term, you know?

[00:03:07] Yes, absolutely. I worked in segregation, which is an area of claims management within the healthcare system. And that's actually how... That was my first job. And so it was kind of the process of when someone goes into an emergency situation, something gets trauma coded on the claims side. And then the subrogation department would review that coding.

[00:03:30] And so it made me familiar with the healthcare system in a way that a lot of my friends and family kind of aren't. But that's my previous professional relationship to the healthcare system. And then I have an anaphylactic peanut allergy. And so I've always kind of been in and out of the health system with that on my... Kind of flagged on my account.

[00:03:51] When I was younger, I had asthma and eczema. And so those things have, you know, followed me on my healthcare journey as I've become an adult. And now I'm well into my... Yeah, I have, you know, a relationship with healthcare. I have a lot of opinions around dreams that I would love to see for equitable healthcare in the U.S. And that's kind of my connection to healthcare in the U.S. And we're both in the same state in Kentucky. So...

[00:04:19] Well, and we met through our mutual friend, Martha Morgan, also known as the Allergy Dragon. She's a podcaster as well that I've interviewed before. And she's doing amazing work here too. I'll just go ahead and give her a shout out because she teaches other people how they can live a flavorful life, even eating around allergies. And so you've worked with her on that some too, right, Zoe?

[00:04:43] Yeah, that's right. So actually, Martha and I have a monthly... It's a free allergy and autoimmune meetup that happens in Louisville. And so it is local in person. And it happens at the Rainbow Blossom at the Gardner Lane location each month. And it's something that we both, when Martha and I met, we actually met at Rainbow Blossom, which is a grocery store here in Louisville, and connected over how we were both looking at allergy brands at the store.

[00:05:11] And we both were like, wow, I'm glad we met each other because we didn't know. You know, sometimes you feel really isolated in your experience. And it was nice meeting someone else face to face in the same city. So after we'd been friends for a little bit, we were like, let's start this meetup and just see where it goes. So we've been doing that for over two years now each month. And it's a really rewarding experience for both of us.

[00:05:36] She brings the chef side and I bring the kind of advocacy and growing up with a food allergy versus her. She had adult onset. So we both kind of balanced it out really well. Yeah. Was that a very different experience for you growing up with it where you kind of had things that you used as coping strategies throughout your life where she had to kind of go into shock with everything all at once?

[00:06:00] Yeah, totally. I think in a lot of ways it is easier. I don't want to speak for everybody, but I've noticed I got a lot of those skills when I was four or five years old when I was learning to communicate. It was like, what is what can you tell someone if you know if anyone needs to know something about you? I was like, I have a peanut allergy. You know, that was the people need to know that.

[00:06:21] It's like, don't feed me anything with peanuts. And so I, you know, I kind of learned that not to say that it was like easier for me or made it easier for me as I transitioned into being a teenager or an adult. You know, I was self-conscious in different ways. And but then with talking to Martha, it's like she was really just one day, you know, had to start understanding what this experience meant.

[00:06:44] And so I feel like I was pre-prepared in a lot of ways just because I was kind of used to certain aspects of carrying my epinephrine and all that. Whereas when it's adult onset, which is actually more common than childhood allergy, people are, you know, it's a huge lifestyle shift for them. And they're used to doing things that they have to change. Inertia is the biggest hurdle. Because it's like, OK, I'm used to avoiding this food. I don't miss it. I don't crave it.

[00:07:11] Whereas other people are like, you know, I developed an allergy to one of my favorite foods. And I don't know that experience. You know, I can only imagine how difficult and heartbreaking in a lot of ways that that would be. Yeah. But you're giving hope to a lot of people and there is hope to prevent allergies from developing. Right. So you want to share with us some of the good news that we've had in research about how to prevent the development of allergies in childhood and such?

[00:07:39] Yes, absolutely. Some very exciting research has finally come out. It's been studied, of course, for over a decade now. But they are finding with peanut allergies specifically, that early introduction is like 80 percent in terms of statistics able to help prevent a peanut allergy from developing. So it used to be when I was younger, when food allergies were kind of really new. I feel like now it's still a new field in a lot of ways.

[00:08:05] But back then in the 90s, late 80s, it was avoidance. And so if you showed any signs of having an allergy, it was avoid, avoid, you know, do not have it. Now it's like, OK, there's much more protocol for, you know, what to do if you're showing signs of an allergy and how to do early introduction and the safe ways to go about it so that it doesn't seem intimidating. And so very exciting that now the science has proved that early introduction is helpful.

[00:08:33] Not to say no one's going to have a peanut allergy or a food allergy, but at least we have more understanding of what we can do for prevention. And it's key because we don't know what the cause of food allergies are and we don't have a cure. So just having that understanding is is huge. And so it's very exciting. Now, does that mean we should start eating tree pollen as children? Oh, no, we don't have seasonal allergies.

[00:09:02] Is the jury still out on that one? Probably. Yeah. We're here to talk about solutions. Well, speaking of solutions, do you have any passion projects, especially around advocacy that you'd like to share with us? I sure do. Thank you for asking. I just published my first book. It's called Invisibly Allergic, which is the same as all my social handles and my blog and website.

[00:09:29] But yeah, the full title is Invisibly Allergic, A Memoir of Survival, Advocacy and Change. And I'm so proud of it. I'm so happy that you're having me on here. It feels like really great timing. Just came out earlier this month. Yes. Actually, it came out 10 days ago. That's perfect. Yes. So I'm just so happy to share it with the world. I'm still working on like the e-book version should be out next month, but the physical version is out and it's wherever books are sold.

[00:09:59] And so that's been a personal project of mine for I was doing the math. And I'm like, wow, it's been over six years. So it was a pre-COVID thing that I've been working on since 2019. And so I've written it so many times. I feel like I'm too attached to it in a lot of ways where I'm excited for other people to experience it and then me to be able to see like what they're getting from it.

[00:10:22] Because I put a lot of thought into it and a lot of just positivity and encouragement and motivation. And it's not just specific to food allergies. It really is that advocacy and like just change that you want to see. And kind of this passion project was me being that change I wanted to see and putting out there the information I wanted people to know. So, yeah, thank you for asking. I'm really thrilled.

[00:10:47] And so if someone wants to read the book, but you want to just give a couple of tidbits on how they can get involved in being more active in advocacy, where would you suggest people start? Oh, let's see. So, yeah, my book is definitely a place to start. Then my website as well. But really, whatever your topic that you're most passionate about, whatever comes to mind for you is like, I really want to see this difference in the world.

[00:11:14] Let that be your North Star and just start doing some research around what resonates with you. Because I think for me, I knew I wanted to make change in the food allergy space, specifically in advocacy. But I didn't exactly know it was going to be a book for a long time. So I've done a lot of different things. And it's just through that action of trying and trial and error, honestly, that I've gotten to this place of it landing into a book form. But, you know, podcast is a thing.

[00:11:41] We've got all kinds of different mediums and ways that you can share your story. I was even experimenting with doing a poetry book in the beginning. So I feel like, yeah, it's just I do love to write of all formats. So I think just letting it flow. And if you can find yourself that flow state where you're creative and time kind of goes away, like let that lead you. Because there's so much good in the world and that can be done.

[00:12:07] And so I just, I really hope that people take away from my book like, okay, if she can do it, then I can do it. Yeah, for sure. And so much of it is just realizing the value of your own experience. And there is a huge power to sharing your story. We can hear facts and figures and numbers all day. But unless it really lands emotionally, then a lot of people aren't ready to take action based on it.

[00:12:34] And when you say advocacy, do you mean raising awareness and the community around people who like otherwise don't interact with people with allergies? Or do you mean ways that you can implement new policies in schools or other places or any legislation that might help? Like how far do you take advocacy? Yeah, I mean both for sure.

[00:13:01] A lot of my book is talking about congress.gov and lobbying and how you can get into lobbying, even if you're just someone like me who does not have a background in law or even writing or anything. You know, I'm in an arts kind of related career path. And so this was my passion project. And so the advocacy really encompasses all things advocacy. If it's talking to friends and family, if it's, you know, starting small, a lot of I'm kind of more extroverted.

[00:13:29] So I was OK to kind of immediately branch out and start going really like, how big can I get with this? But I have done lobbying in D.C. for food allergy policy. I have specific acts and bills that I talk about in my book that recently passed or I would love to see pass. And I get really granular and specific with it. But I think it could definitely even just start with where your workplace is and talking to people in the general public

[00:13:57] in ways that could resonate with them. Because I do think just general public is huge. It's such a big population. And if they can start to, like you said, kind of connect with that emotional part of things, it's key to getting people to care. Because a lot of the times it's like we can be really caring people, but you can only really focus in on so many things. And so just getting it on people's radar is really. Definitely.

[00:14:23] So this brings us to the billion dollar question that I ask every guest on the Nurse Rosa's Insights podcast, which is, Zoe, if you were given a grant for $1 billion to meet a need that you see in health care, how would you like to see it used strategically to have the most sustainable impact? I love this question. And I have thought long and hard about my answer. I've done some Googling of like how much is it?

[00:14:51] You know, a billion sounds so huge and is very powerful. It is a lot of money. But I was like, can it overhaul the, you know, health care system and give universal health care to all? No, it can't. Yes. So I really thought about two areas specifically that I would like to split evenly or maybe give more to one than the other. The biggest one is free access and care for epinephrine access. So I may have said that weird, but free access to epinephrine.

[00:15:21] And so that would be something where there is no barrier for someone to access having the right amount of epinephrine that they need, whether it's two a month or, well, hopefully not two a month. But it can be in some situations where people are using eight in a month because they don't know what their food allergy is. I've heard stories of people having to go through them because they're learning what they're allergic to still. And they're having trouble pinpointing it with their allergist.

[00:15:48] And so whether it's, you know, something like that or if it's just carrying it yearly and having access to it where it's not expired or, you know, just access at all. So some type of means of making epinephrine free and nationwide. And then I would love to do kind of coming off the heels of the conversation around general public awareness, some kind of public health campaign. I don't know what it would look like yet, but those types of efforts to maybe a commercial, billboards, you know,

[00:16:18] all the things kind of putting it towards just educating maybe common misconceptions around food allergies so that people really understand the seriousness of what a food allergy can mean. Because I think there is still a lot of confusion around it. And there is, as we see in the media, people don't always take it seriously still. And I think it's just an education issue with the general public. Yeah. Well, and there's so many like varying degrees of allergies, too, right?

[00:16:46] If somebody, you know, your seasonal allergies, obviously, are different than food allergies are different. You know, what are some myths that you would want to see busted in this campaign? Oh, yeah. So I definitely think like kind of what Martha and I can speak to at our advocacy group and meet up early onset versus, you know, childhood development of food allergies. People tend to think, oh, food allergies are a childhood issue.

[00:17:13] But actually, statistically, it's more likely that you'll develop a food allergy as an adult. And so I think that's a big one because people think, oh, it won't affect me or, you know, it doesn't affect my kids or but it actually could affect anyone at any moment. So it really for some people, it is a spectrum. I think that's another big misconception.

[00:17:33] So, like you said, could go from allergies as an environmental to anaphylactic, you know, food allergies and having people understand that maybe they know someone with a food allergy, but that's not necessarily the food allergy experience across the board. My experience is not going to be the same as someone else's food allergy experience. And it's very individual. They say it's like, you know, as individual, your allergy experience as your fingerprint, you know, it's everyone's different. So I think those would be two places to start.

[00:18:03] So people realize like, OK, I know maybe someone with a food allergy or I've heard some things, but now I know it can look a lot of different ways. And then, yeah, knowing it's not just a childhood issue, but also, you know, a lot of children are affected. And I think things like the gluten allergies or other allergies that show up in the GI tract can show up in less obvious ways because they send someone to the bathroom. And people don't want to talk about that.

[00:18:30] It's not pretty, but especially in my line of work as a nurse, I got to be a witness to things coming up and going out that, you know, we're just out of control and causing people to be really dehydrated. We have electrolyte shifts like it's it can be really dangerous.

[00:18:47] And so there are some things that, you know, I think when people thought I'm going to say I have a gluten allergy so I can lose weight and then I'm going to throw a fit about it in a restaurant that kind of made gave celiacs a bad name, you know, when they have a legit medical issue that they need to protect against.

[00:19:07] And so I think there is definitely a lot of room for education in that area about when you have a gluten allergy or intolerance versus this is a dietary choice because I'm trying to lose weight right now. Absolutely. Yeah. There's a lot of that that gets mixed in with restrictive diets versus, you know, food allergy or celiac disease. And yeah, I could talk to that for a long time.

[00:19:31] It even makes me think of like the celiac tax or the food allergy tax, which is something that I don't know if you've heard of before, but people talk about it in the space. So if you're affected by celiac disease or having a food allergy or really any like dietary restriction like that, how much more expensive it is to eat versus someone who doesn't have any restrictions. And so I think that's an important thing that could get focused on more as well as like the unseen side.

[00:19:58] And that could apply to food, but it could also apply to just medical bills and things that I've heard you talk about on your podcast with others of, you know, just how quickly medical bills can add up. If you have something that's like a chronic illness and yeah, that like tax verbiage, I feel like it's helpful because it's something other people without allergies still understand what taxes mean and how it can cost more and that kind of thing. Things cost more. It's not like that's not a policy advocacy issue so much, I don't think.

[00:20:27] And so much as it's not because the government is taxing it more like the government taxes. We have sin taxes for like alcohol and tobacco products, for example. That's not what we're talking about. This is more like the pink tax where things that are pink cost more than things that are not because they know they can do that. Right. Still. So, yeah, it's true. And the cost of just making things in an allergen friendly facility like does cost more.

[00:20:57] And so I think that's part of it as well. Like it's just something that I think a lot of people don't consider. But once they are, you know, impacted by a food allergy in their family, in their household, they start to notice the differences. And, you know, that can even be just having to pay for, you know, epinephrine costs if you don't have insurance or, you know, something like that. It's like an unseen side of whatever it is that you're dealing with. Exactly. So what do you think?

[00:21:26] Do we need a Netflix documentary about this? Or is there already one? Like what do you think would be the way to get it out to everybody to bust these myths? Yeah. Well, you know, there is. So there's not one on Netflix, but there is a movie. It's a docu. I think it's considered like a docu. Gosh, I'm not sure if they're calling it like a docu series. It's a movie, like a full length feature film. But it's part, you know, reenactment and then part documentary style.

[00:21:56] And it's called May Contain My Life. And it came out last year in like a limited capacity. And I think it's becoming available more places and is streaming now. So that's something that people could watch. I will say it's it is graphic. It's accurate. Talking about like what the real look of, you know, going through an allergic reaction or going through gastrointestinal distress or something like that looks like. Good. Yeah. So that's cool.

[00:22:25] And I want to see more like it. I think there's other things around celiac in the same way coming down the pipeline. But to get something at like Netflix or, you know, on a streaming app to take something like this on would be incredible to see. I would love to be a part of that. Yeah. And I think there's a huge appetite for documentary style stuff. You said part of it's reenacting and part of it's like narrated. It reminded me of Drunk History.

[00:22:55] Did you ever watch that? Yes. I love that. That was so interesting. Yes. That would be fun to have it in more of a positive way, too. Like Drunk History where it is like more lighthearted. Yeah. You're not supposed to take it too, too seriously. Yes. But you do want to take the allergy education seriously. So there is that. But I'm glad like if it's reenacted, then it helps the emotional impact land. Right. Like a lot of people are watching The Pit right now.

[00:23:22] And it's realistic for what it's like to work in a hospital setting. And so that's helping a lot of the messages emotionally land with people who have never lived it themselves because they can emphasize finally ever. Yes. Yes. Visually. And it would go against a lot of the narratives that we tend to see in like, you know, Hitch or just movies where anaphylaxis is shown incorrectly.

[00:23:45] There's no epinephrine being used, you know, all those types of things out there that have been out there since the 80s, 90s, kind of spreading misinformation accidentally. It would be amazing to see more accurate representations of, you know, what it could look like. And that could be a spectrum. It doesn't have to always be anaphylactic. It can be all across the board. And some people are like, oh, there's no need to show stuff that's graphic. But then it's like, have you seen the TV shows that people watch?

[00:24:14] Have you seen the video games that people play? They are graphic. So, I mean, it's not that there's not an appetite to consume graphic content. So what better use is there for graphic content than to educate you for your own health and the health of others? I think that's the most noble reason to have graphic content and not just not for entertainment purposes, but to literally make someone's life better. That's worth it.

[00:24:42] Also, I'm a nurse and it's like, this is real life people. Yeah. Yeah. It's okay to step out of your ivory tower where you haven't had this before. I don't like people who are suffering. So I'm totally with you on that. So I hope it does get picked up. Yeah. I think I got an email from this group in Germany, I think it is. I have to double check. I hope they're not mad at me if it's not Germany, but they're speaking German.

[00:25:08] In a feature film about a nurse working the late shift. So the name of it is the late shift. And it goes through in an hour and a half. It shows the course of her night shift. And there's only like two nurses on the whole ward. And it is real life. Yeah. Like so many times just like caught my breath. I was like, oh, they just did that.

[00:25:35] You know, not because it was so profound, but because it's so profoundly absent from the consciousness of people who haven't been there. Yes. To really understand the impact of what it means when they say there's only two nurses there. What does that mean? What are the impacts of that? What difference would it make if there was another human body? Wow. Or if they were able to take a break in that moment, would they then not make that mistake? Like, yeah, because we're all human. That's all, you know, it's all we are.

[00:26:04] And it's like, is this a systemic issue where hospitals and just, I mean, you talk about it a lot in your podcast of just nursing shortages. And why is that? You know, let's look at the reasons why and why. So it's not the blame isn't on that one nurse. It's a system that is not supporting the nurses. And it's a larger issue.

[00:26:26] And so that's amazing to be able to feel seen and for other people to see it and reframe maybe some anger or feelings that they have coming up towards like a experience that they had when a place was short staffed. Well, and I think it does kind of like what you're talking about, like telling it from the position of your story where, you know, anaphylaxis is really dramatic. But there are so many like day to day moments that make such a big difference and so many individual choices.

[00:26:56] And so like, just like you're sharing your story and that's a form of advocacy and providing what I don't know. I don't want to say ammunition, but like providing substance with which to advocate. Right. Right. I was really surprised that this was made. This movie I was watching was made in Germany because I thought a lot of the time I think Americans think, oh, those people in Europe with their socialized medicine, they got it all figured out or whatever. But apparently not.

[00:27:25] So I was like, this is so relatable. This could literally all have been filmed here. Wow. It's interesting. Yeah, it is. And there's not a lot of times like this movie had subtitles, so I don't have, I don't watch a whole lot of movies with subtitles. When I do, they're probably from India and they probably are also musicals. But I love it. Right. Yeah. But this is really well done. So, yeah, I'm with you. I'm on team documentary for sure. Wow.

[00:27:55] Because I think that helps us, videos help us learn. Hence, we're supporting this to get our messages out, right? Yeah. Some people just like to take content in different ways. And that is a very popular method. Just like, you know, I enjoy watching podcasts instead of just always listening. Like there's just different things that we are drawn to. And it's like, why not put it out there in different ways? And yeah, that's very interesting.

[00:28:19] It's almost like it makes me think of like I've seen nursing infographics before where it's like the day shift versus the night shift. And it's like that's just another way of showing an infographic or expanding upon a topic like that. So I love that. I'm going to have to look into it. That's awesome. So, Zoe, if anyone wants to get your book, where can they find it? Yes. So I guess if you're super hyper local like where we are, you can go to Carmichael's in Louisville.

[00:28:47] But then it's on Amazon, Barnes & Noble. I have a website. It's invisiblyallergic.com. And when you land on it, it's got all the links where you can buy it. So that is you can really get it wherever books are sold and hopefully ebook coming very soon. Yes. Hey, let me know if you do an audio book because I really love audio books. I'm planning on it. Oh, good. Yeah. Yeah. I don't know exactly like I'm learning how to do it.

[00:29:14] So I don't know the timeline, but that is definitely in my plans because I like a lot of audio books too. Oh, for sure. And let me know if you want my studio guy who recorded me doing mine. Okay. Yes. I would love. Please meet Quincy's. Yes. But yeah. And then, yes, they can follow you on Invisibly Allergic at any social media platform.

[00:29:35] And then for those who are listening, if you've enjoyed this episode, please like and subscribe wherever you are listening or if you are watching on YouTube. And you can follow me at Nurse Rosa Speaks on all the social medias. Or you can find me on LinkedIn and happy to connect and hear your thoughts on what you liked about the episode. Or if you know someone else who has an answer to the billion dollar question, I'd probably love to meet them.

[00:30:03] So point them this way and I'll see you in the next episode.