Don't Feed the Fear: Food Allergy Anxiety & Trauma
Welcome to "Don't Feed the Fear," where licensed psychologist Dr. Amanda Whitehouse offers expert guidance on managing the social and emotional challenges of food allergies and related conditions. Tune in for compassionate advice, practical strategies, and inspiring stories to help you navigate anxiety and trauma with confidence and resilience.
For more info on resources from Dr. Whitehouse, go to www.thefoodallergypsychologist.com
Theme song: The Doghouse by Kyle Dine, www.kyledine.com
Used with permission from the artist
Don't Feed the Fear: Food Allergy Anxiety & Trauma
Safe to Eat: Devin Sailer's Mission to Change the Food Allergy World
This inspiring episode features Devin August Sailer, teen allergy advocate and founder of Safe to Eat, an organization providing Top 9 and gluten free foods to domestic violence and emergency housing shelters in upstate New York.
We talk about what it's like navigating the world with food allergies as a young person, how Safe to Eat was created, and how even the smallest acts of advocacy are important.
Trigger warning: Devin shares a story about a severe allergic reaction. He talks about how infusing his unique sense of humor into these experiences is a part of how he has come to accept them as his reality, while learning from them to prevent future reactions.
This is a great episode to share with teens managing allergies.
Support Devin's work at https://www.safetoeatnow.com/
Special thanks to Kyle Dine for permission to use his song The Doghouse for the podcast theme!
www.kyledine.com
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since I've had this lifestyle my whole life, I've gotten used to it. I've developed strategies I've developed. A way to center my life around it without it necessarily limiting my life. When we talk to kids and when we talk to food allergy parents, I think we far too often focus on the fear and the limitation of it. And I think it's the natural instinct of food allergy parents to wanna protect their kids, but also we can't smother them. We need to help them and facilitate their growth as individuals and find ways to make life work for their allergies, not make them live life for their allergies.
Speaker:Welcome to the Don't Feed the Fear podcast, where we dive into the complex world of food allergy anxiety. I'm your host, Dr. Amanda Whitehouse, food allergy anxiety psychologist and food allergy mom. Whether you're dealing with allergies yourself or supporting someone who is, join us for an empathetic and informative journey toward food allergy calm and confidence..
Amanda Whitehouse, PhD:today's conversation is a very inspiring chat with an amazing young teenager. Devin August Sailer is here to tell you about the work that he's been doing as a nonprofit founder, a legislative advocate working on changing the laws to improve food allergy safety in New York and in the United States. Devon lives with 31 life-threatening allergies and has turned his personal health crisis into a powerful public mission. At 17, he founded a nonprofit called Safe to Eat, which brings allergen aware food to domestic violence and homeless shelters across New York State. Devon says something that I love, which is that he's working so that his voice will help to reshape not only laws but lives
Dr. Amanda Whitehouse:Devin, it is so nice to see you again. We met in Albany early this year, and I loved meeting you and seeing you in action, so I'm so glad to have you here in the show now.
Devin Sailer:I'm absolutely very happy to be here. It was an honor to meet you there. I think we had a great little discussion about food allergy anxiety and the general effects of more the mental health side, which I think is sort of under spoken about and underrepresented in the community.
Dr. Amanda Whitehouse:I agree, especially from, younger people who are the ones living it. There's a lot of us moms out here talking about it. Not as many of us focusing on the mental health, but definitely becoming a bigger conversation. But you are the person and the kind of people that I think we need to hear from about that side of things and what's needed and, and where we need to go.
Devin Sailer:I think sometimes the kids, it's a little embarrassing or perhaps shameful for them to speak about these sort of mental health topics, especially, For the men, they sort of see it as a weakness or sort of emasculating, and so that's a stigma that I really think programs like this can help to break down and pave a new path for the future with this.
Dr. Amanda Whitehouse:Absolutely. People like you, being a part of it is, is the most effective way for me to do that here on my platform. So thank you. And just in case people aren't familiar with you, could you introduce yourself to the audience?
Devin Sailer:Well, I'm Devin, August Sailor. I'm just a boy from upstate New York who happens to have 31 anaphylactic food allergies. And so throughout my life I've always struggled with my food allergies and asthma. And so really. A few years ago, I decided that I wanted to combine my personal experience with food allergies and my interest in politics and government, sort of combine them together to see how I could better the community. And so that's really led me on this very interesting course where I've been to Congress and I've been to the state legislature many times. I just came back from Chicago on another trip that I went to to speak about food allergies and such with Cfar. And so it's been the honor of a lifetime so far,
Dr. Amanda Whitehouse:yeah. Why don't we start with, the food allergy part. Tell us about what life is like from a young age and, and how you've, progressed over time as far as managing that side of things.
Devin Sailer:Well, when you're younger, it's usually not me who's doing all the work. I have to give the, uh, kudos and the credit to my mother. She's single mother, amazing woman. She really kept me alive very simply. She saved my life on multiple occasions. And so when you're in that younger era, uh, you certainly do have a lot more responsibility than a typical seven or 8-year-old. You're responsible for your epinephrine, responsible for your own life, in some sense of the work. So I don't think most seven, eight, 6-year-old kids are reading food labels. They're not, uh, obsessing over every little thing they're putting in their body. They're typically putting things that shouldn't be in their body, like crayons, hands, and so forth. And so when you're that age, there is that difficulty in it. But as you progress through the years, it certainly gets a lot easier carrying an EpiPen or nephew or some other form of epinephrine. It just becomes second nature. But I do also think as you. Age into those later teen years. It can be a little embarrassing to carry it as well as I do think there is that, you know, hormonal sort of foolish risk taking that often happens and that can be a recipe for disaster. In my personal life I've, you know, sort of abstain from that. But it's absolutely a reality for many, uh, who are struggling with this condition. Yeah.
Dr. Amanda Whitehouse:Well, and I was going to say, you seem so levelheaded, but so do many of the teenagers that I know with food allergies so even though you haven't experienced that, can you talk about what you've seen with peers or what you think is going on when kids hit that phase?
Devin Sailer:On that? I would just say a watch pot never boils when you're looking at somebody from afar, they always look. All pristine and perfect, myself included. But everyone has their, uh, mix ups. Everyone has their flaws. And so I serve on something called tag, the Teen Advisory Group. And that is an organization from FARE where sort of older kids can speak, not necessarily only to younger people, but as well as those of their peers. And they can give them a little guidance on the future. And so I certainly do hear a bit about partying and so forth and how that can. Impact their lives. I come from an area in rural, upstate New York, we really don't have many kids who have food allergies. But there is one other individual at my school who also has food allergies. And he's spoken to me a bit about how it can be difficult, uh, in social settings. And it's not so much a shame, but just. It's a little weird and clunky to carry around these giant pens all the time and constantly having to explain them and so that can absolutely be difficulty.
Dr. Amanda Whitehouse:Yeah. Have you found that as well, even though like you said, you've maintained your levelheadedness and you're not into the risk taking but has it been challenging for you too?
Devin Sailer:I've absolutely had my share of challenges with it. Sometimes I forget my epinephrine. I won't lie. I won't say that I'm some angel who has never made a mistake. I absolutely make mistakes. I forget my epinephrine from time to time, and that can be a very stressful experience as well as I'm somebody who travels. Uh, I'm very fortunate where I'm able to travel and so when you're going into different countries, when you're going through airport security, uh, it can be very difficult to carry these epinephrines on you.'cause they may be, I can give you an example. Just a little bit ago when I was traveling to Chicago, uh, they man took my epinephrine and they asked me, what is this? I briefly explained to him, but we were three minutes away from my flight going off. We had no time to do it. And instead of putting my epinephrine back in the bin, he put it in some random bin at the end of the line. And so if a family member of mine hadn't caught that, I would've been without my epinephrine in a city a thousand miles away from where I live. And so, especially when you're outside of the house, or even more so when you're outside of your I municipality or your state, it can be a very stressful experience.
Dr. Amanda Whitehouse:Yeah. Tell us how, and I know we were very young, but how you first got involved in advocacy and all of the work that you've been doing.
Devin Sailer:Well, so we like to say that I started at age three, but I think if anyone has met a 3-year-old, it's pretty obvious. I wasn't giving speeches, I wasn't doing the complicated work. What I was doing is I was. Uh, going on food allergy walks, we would carry little signs and so forth. Really the minor things you can do at that age, but it was impactful to me. And so as I matured, as I grew up, I sort of began to develop an interest in politics and government. And so me and my family had a talk one day saying, Devin, you love politics, you love government. You also have this unique set of circumstances and challenges. Why not combine these two interests of yours? Combine these two circumstances and try to find a way to improve the community. And so then the first thing we did is we talked to an organization that I'd worked with in the past called FARE, and I was able to go to a Congress at DC and it was called FARE Courage at Congress. And it was really my first exposure to the legislative process. And how the government works at an individual to legislator basis. And you know, it was absolutely very interesting for me. Did we get everything we wanted? No, but it's a very complicated world up in Washington and so it's very difficult to meet with, uh, legislators in Washington. So then we decided this is something I still want to keep doing, but we can't afford. And it's just not feasible for most people, including myself, to go to DC every year to go to DC every few months. But what is feasible is to go to Albany every few months where I, New York, that's our capital, but it's dependent on your state, obviously. And so we decided we were going to go to the state legislature now and again to advocate for new,, laws, to advocate for new sort of. Projects that we were working on, and so I worked with food allergy advocates of New York and I continue to do so, and it's a great organization. We work well together and I'm very proud of the work we've gotten done.
Dr. Amanda Whitehouse:Absolutely., That was where I met you was this year's, food allergy advocates of New York, advocacy day in all of your experiences with this so far, do you have a proudest moment or biggest accomplishment that you've been able to be involved with?
Devin Sailer:Oh, absolutely. For me now, it wasn't just me personally, but for Food Allergy Advocates of New York, I think what has to be our sort of crowning achievement is the epinephrine price cap. So epinephrine costs about$8 to manufacture with not just the medicine but the auto injector. All yet, they could sell as high as$800 and that's every year you have to replace them. And so in the state of New York, we got a captain$100 a year, and that is, I truly did not believe it would get passed I thought this is a very big ask. Doesn't matter what party's in control, doesn't matter what type of the individuals in that party's in control. This is a big ask to ask for any state legislature, but we were able to get it passed and I was shocked and I'm very glad that it happened. And so that has to be my, and probably food out, food allergy advocates of New York's, uh, crowning Achievement, I would say.
Dr. Amanda Whitehouse:I agree and I thank you personally for that. And I know, John Terry and Toni Taylor are are. So influential and, and taking the lead on that group, and so thank you to them and everyone else for that. I'm in New York as well. As I mentioned, very excited for this one to take place because as you said, one of the biggest, ways to stay safe is just we, we keep a pack. You know, here we keep a pack of grandma and grandpa's, keep one at school, keep one at your office and that can add up, but it's not frivolous. It's really necessary. So that is not an option for everybody the way that the pricing is right now. Absolutely.
Devin Sailer:And people shouldn't have to choose between, uh, for instance, rent and uh, epinephrine. It's just not a situation where we should force to be in. And so that's why this law is so necessary and so groundbreaking in my opinion. Politics, I think people like to say, oh, it's a game of chess where you're making very intricate motions. I really don't think that it's really like a dominoes. You set'em up, they fall. They fall short. That's just how it's, and so I'm hoping that we can have that domino effect in New York that spreads northeast, spreads down south, and then we take it all the way west. That's what I hope happens.
Dr. Amanda Whitehouse:I agree. And I, I would have to say to continue on your metaphor, I think the key part of that, that I am learning from all of you is. You have to set the dominoes back up, right, and over and over. That's the part that gets the job done eventually, is just that persistence and that hard work.
Devin Sailer:And on that a bit, I think I've spoken to the legislatures a bit on this, and just if anyone out there is working in this advocacy industry, anyone who's working out there in the lobbying industry, what I have repeatedly heard time and time again is just the bane of the existence of legislatures. Is when people come in with a bill one year, it gets rejected and they propose the exact same bill year after you. If you don't speak to the opposition, if you don't speak to the main party and see what caused them not to support it, it's just going to keep having the same result. So you have to modify the bill. You have to take, uh, different views into account, even if it might water down the bill a little bit. I would much rather have a watered down bill than no bill at all.
Dr. Amanda Whitehouse:Right and in time. Continue to improve upon and make changes as necessary, right?
Devin Sailer:Absolutely.
Amanda Whitehouse, PhD:Devin, I know one of the projects that you are so excited about is something that you have created So please tell us all about it.
Devin Sailer:Well, so over the summer I founded a charity called Safe to Eat, and so that name comes from myself and some of the issues that my people like me have. When it comes to, uh, domestic violence and homeless shelters, is that they don't have food that is necessarily safe for them to eat. And so what we do is we facilitate the flow of top nine allergen and gluten-free foods into domestic violence and homeless shelters. And so over the course of our journey, so far, we've had some pretty big successes. We've delivered hundreds of pounds of food to, uh, several shelters across upstate New York. About the size of Jamaica is the area that we serve, but we want to expand. So we want to, over the next few years expand to cover the entirety of upstate New York and we'll see where it takes us from there.
Amanda Whitehouse, PhD:How did you get the idea for this?
Devin Sailer:Well, the idea really came from, uh, my life is that, uh, I was never in a domestic violence shelter. I was never in a homeless shelter. But, grew up in an area where we have a high population of homeless people.. That combined with, uh, my childhood is my mother works in midwifery. We're constantly around women. We see them at the stores. They say hi to us and a lot of them are in not great situations. And so that sort of inspired me. Those two, uh, factors in my upbringing is to say, what if I were in that situation where somebody like me was in that situation? I don't know if I would survive that. So somebody needs to be looking out for these people.
Amanda Whitehouse, PhD:Yeah. Yeah. We talk a lot about access to safe foods. When there are disasters and disaster relief, bringing safe and accessible food to people. But this is another area where people are in a time of probably the most need of their lives.
Devin Sailer:Yeah, I agree a hundred percent. We're a small team. It's myself, my family, my mother, and then some people working with us. And so we're very proud of what we've accomplished and we hope that we can bring that level of safety, that level of comfort to some of the families that we've helped out.
Amanda Whitehouse, PhD:Tell me how you start going about establishing something like that. Where do you begin with such a big undertaking?
Devin Sailer:Well, the direction we chose is just to become a nonprofit. You have to get into contact with, domestic violence shelters, homeless shelters, and other facilities to make sure, hey, we're somebody who exists. We intend to continue doing this. We want to have a fruitful relationship together. How can we get this started? Sometimes that can be more or less, uh, accomplishments, uh, depending on who you call and the time of year. So, uh, for us, I would argue we were very successful. We got our goal and we're just chugging along from there. I can't tell you the ending phase'cause we're not there yet. I don't think we ever will be. Education is a major component of what we do. Every time we deliver food. We have flyers and pamphlets talking about our charity, talking about why we have to provide this food. We're not just people trying to be good Samaritans. We're trying to further a cause by saying, this is an issue that is unaddressed. Here's how, even if for some reason we're unable to deliver this food, here's how you can care for these people.
Amanda Whitehouse, PhD:Who are your biggest supporters so far?
Devin Sailer:Well, one of our biggest supporters is Vermont Nut Free, If somebody reaches out to us, obviously we're going to, uh, speak to them. We love when that happens, but sometimes you have to give that initial push and see what happens. Sometimes we buy our own food, so if we didn't get as much as we would've necessarily wanted, we can top ourselves off. We say, okay, we'll reach into our own personal finances and buy X amount of food.
Amanda Whitehouse, PhD:That's amazing and a huge shout out to Vermont Nut Free. They're an amazing company.
Devin Sailer:an amazing, uh, company. I, in my personal life, we're not sponsored by them, but we have partnered with them. We love their products and it's so kind of them to work with us. Okay.
Amanda Whitehouse, PhD:Well, it's so heartwarming you know, as a kid with food allergies, when you can have like a chocolate bar or a special treat that is safe for you, it's, it's so amazing. But especially in that situation,
Devin Sailer:That is something we wanna focus on'cause we're approaching some of what I would call the major food holidays. When you're in these, uh, situations in domestic violence shelters, in homeless shelters. You can't necessarily have that same Halloween experience, or for instance, Thanksgiving, where a lot of it is, for instance, pecan pies and so forth, as well as into Christmas. Depending on your personal culture, depending on where you're from, where you are in this country, it can have a gargantuan amount of nuts or you can have less. That's something else we want to make sure we can address, is that we don't think that the circumstances of your birth or your situation should prevent children from having a good holiday season. I don't think that you should have a less happy holiday season or life because of the circumstance of your birth, that's just wrong.
Amanda Whitehouse, PhD:That's such a great point and with all the winter holidays coming up, it's a great time and a great reminder to ask people to support your organization if they are moved by this, which I'm sure they will be. And the thought of helping families in those situations is so awesome. What can people do to get involved and to help and support you?
Devin Sailer:Well to get involved, if you want to get involved with me, you can go to our website, safe to eat now, or you can shoot me an email. My email is also on the website. I will talk to anybody about anything. If there's anything I could do to help people, I would love to hear it. As for how they can get involved more broadly. I think awareness is obviously a big thing that, uh, will assist my project and other projects like it across our country and hopefully across the globe. But as well as it is just to maybe have this, inspire you to donate to a facility in your area. Maybe have this be a reminder that in more rural areas, even outside of more metropolitan communities, there's also a need for this. So if you want to make a donation to an. Uh, domestic violence shelter in your area.
Amanda Whitehouse, PhD:Do you accept financial donations or food, or are you encouraging people to donate more directly to the facilities? Only.
Devin Sailer:Uh, we encourage people to do both. We do not accept financial donations yet. That is something we. I would like to do in the future. We accept donations of food, the best way to do that would just to send me an email. We wanna make sure that we can truly believe in what we are sending to these facilities.
Amanda Whitehouse, PhD:I bet it, it would also probably be helpful if anyone has connections to or wants to just encourage the brands that we know and trust in the food allergy community to to know and learn about it. I would assume that would be helpful too, in raising awareness of what you're doing.
Devin Sailer:I would agree a hundred percent. I think I, there is no step that is too small to helping a community. If you do anything at all, you're doing more. Then people more than a lot of other people are, and if everybody just did made one donation every year, everyone just did one good act every day. We would have a lot better world.
Amanda Whitehouse, PhD:What else do you want people to know about Safe to Eat?
Devin Sailer:I would just like people to know that we're here, we exist. There are lots of other entities like us, but we are the entity that is trying to serve upstate New York. We are trying to serve our area and I want people to know. That there is a need, everywhere across the United States and the world in these rural communities. There are similar difficulties when it comes to domestic violence and homelessness.
Amanda Whitehouse, PhD:Well, thank you for doing that work and thinking of such an important area of need. I'm just continually impressed by all of the things that you're doing and how important they all are.
Devin Sailer:Well, thank you for being a part of the solution. Thank you for helping us reach out and get the message out there. So I hope that this not only will help our organization, but I hope it just helps community more broadly. I hope it helps local and national communities in being able to address these challenges.
Amanda Whitehouse, PhD:I am sure that it will, and the website again is safe to eat now.com. And I will put that in the show notes too,
Dr. Amanda Whitehouse:I would like to talk about you a little bit as far as the honors or the recognition that you've gotten.
Devin Sailer:well, so I recently went to New Orleans to receive an award called the Billy Michael Student Leadership Award. It was a great time. We were able to tour the World War II Museum. Now, I'm personally a history buff. So it was great to be able to speak to some of the staff, speak to Billy Michael himself, and see some of those exhibits. And of course it was also a great honor to get the award. I also recently went to Chicago. Under the CFAAR Ambassadors Program. It was an amazing time. I was able, able to meet some extraordinary people, both youth and adults, uh, especially the director of Cfar. She's an amazing woman and one of the most intelligent people I've ever met.
Dr. Amanda Whitehouse:Absolutely agreed. She is amazing and has done so much for the food allergy community it's wonderful that she knows who you are too, because you're bringing some really important, wonderful, intelligent stuff to the table too. In my house, sometimes I feel really grateful because we've outgrown and we're left with peanut tree, nut sesame. And the more people I meet, the more manageable that seems compared to someone like you with 31 anaphylactic allergies. Would you mind sharing about that specifically?
Devin Sailer:Well, so I am allergic more broadly to all forms of nuts and fish, which is. Obviously a big chunk of the, uh, food plate or the food pyramids, so to speak. And so it's, I've grown used to it. I think absolutely when I was younger and we were doing Halloween and so forth, then it can become very limiting. But fish, I would say is the more difficult one in my day to day, day-to-day, just because I think, uh, America. We're a pretty multicultural place. We have a lot of different kinds of food, a lot of different diets. And so I think when it comes to especially more, uh, Eastern or Asian foods, what's very common is fish. So for instance, sushi I would have as the top one. Those are very popular, very trendy restaurants. It's not really something I can do. And so especially with people who maybe aren't used to, uh, food allergies being around, they might have. Cooking practices, which could put somebody at risk. And I've had, uh, cases where I've had a reaction to just unsafe food equipment. It's a reality that is ever present for me.
Dr. Amanda Whitehouse:I appreciate you sharing that you've actually had a reaction from it, because I think that helps people to hear that it's real, you know, that it has happened. It's not a fear, we're not being irrational or, or having excessive worry about it. It's an actual risk that causes people to have a medical issue. I think it's very helpful to people, for people to hear, especially teens, to hear from other teens, if you're comfortable, can you share with us if there's a specific, memorable reaction or the most recent one?
Devin Sailer:Well, I'll share what I consider the most fun one. Fun in terms of it's the best story to tell. Certainly was not fun for me. And so I I was gonna say your mom doesn't, it was fun. Oh, she certainly did not, my family does not see it as a very enjoyable experience, but I think it's a very fun, insofar as it is an illuminating story that you can share. And so, uh, I consider it that because this is a story where me, my mother, my sister, we did everything right and we still got, you know, screwed over in the end. And so I'm gonna leave out any business names, but. We like to go to New York City from time to time. We, we live in upstate and so not too much to do around me, so we head down to the city and everything go, goes very well. And this is a restaurant and we've been to many, many times for amazing restaurant. Not amazing in terms of safety anymore, but amazing food. And so we've been there two or three times before and we'd get the same dish every time. It was delicious. But then this time they had a item, a new item on the menu. Weirdly expensive. Just too little like flamme mignon bites. And so I eat them. My mother and I and my sister, we all split them where we all get, you know, a little tiny portion. But I'm somebody who loves meat, so I get the lion's share as the young man who needs to grow. Yes. And so, and that turned out to be a mistake, but continuing with the story, we were eating and eating, everything was going great. And then we got these little shots, obviously non-alcoholic, but they were shots of a, a paste, a soup of some kind, and they had green onions in them. And so I took my shot. It was delicious, and I noticed something. It's been, let's say 30 minutes or so, not too, too long on the grand scheme of things. Then I noticed the green onions were getting stuck to the back of my throat. I couldn't swallow them. And no matter how hard I tried to dislodge'em, I just couldn't. So I drank water. Eventually, everything was fine. Then my mother notices, Hey Devin, you're not looking too great. Everything all right? I felt okay. So I just took Benadryl. My mother figured this is just idiopathic angioedema, which is a condition I have. We were hoping everything is fine. We'd ate there so many times before we figured everything was fine. So we finish our food and we start walking to the train station. We had taken a train. Uh, from Albany to Poughkeepsie and then to New York. And so as we're walking there, my family realizes, Hey, Deb, everything all right? You're breathing a little weird. You're not looking too great. And so eventually I'm able to walk there, everything's okay, but then I sit down and as I sit down, my mother starts to get pretty concerned. And so we just keep giving me Benadryl and Benadryl. And because we're, we have a train we have to take, and if we don't take this train, we have no place to stay in New York City. We have no way out of New York City. And being that we live hours and hours away, that's not a good situation to be. So we have to make a very important decision. Are we going to go to the hospital or are we going to catch this drain? Now I'm here. So we obviously made the correct decision. We went to the hospital and so at that point it became very clear. I was not okay. We called a taxi, we wiped them down. And in that taxi I had to give myself an epinephrine autoinjector. I used the generic version of an EpiPen, and up until this point, it was very difficult to breathe. My nose was running. Everything felt bad. It was not a fun time. So once I injected myself through immediate sensation of relief, now it was everything just good and dandy. Absolutely not. But there was that immediate relief. And so at this point, there are now two stories. There is the story I tell, which is the cap hold over and I triumphantly marched into the hospital. We were told we had to go down another flight of stairs or another ramp or so, and I triumphantly stroll in, and for some reason these fools at the hospital decide to make me go into this wheelchair. That's my story now. Where my family would tell it differently is I am barely able to walk and they have to drag me into the hospital where I am. Then obviously seated in a wheelchair, being that I am unable to move. And so then I am brought into the hospital. They treat me and uh, the hospital staff are very kind to us. Uh, we were allowed to stay there over the night. Everything turned out fine and I obviously survived, and so that is what I consider the most illuminating experience, but that's not the worst part. Because you see, up until this point, we don't know what caused the reaction. Everything seemed normal. And so after the fact, my mother gets on the phone with this restaurant to go unnamed and you know, a woman picks up a young woman, very aggressive, very sort of snotty, And then my mother begins to explain the situation and her response sticks with us. To this day, it's, we've been getting tons of situations like those, these food allergic reactions. It turns out there was about a spoonful or so of peanut butter in these, uh, little bites, filet mignon bites. And so that's what I'd eaten.
Dr. Amanda Whitehouse:Thank you for sharing that. I can appreciate how you can infuse some humor into the story. I'm still, the word fun isn't still sitting well with me, but I get. What you mean? It, it grabs your attention. Um, but then, so what next Can you talk about after you've had a reaction like that? Obviously maybe you weren't scared of the moment when you thought you were triumphantly walking into the hospital, but at some point there has to be some emotion that sets in and a lot of people say it's hard to move forward and get back into day-to-day life again after that.
Devin Sailer:Well, I'll be honest, for me, it wasn't that difficult to move into the day to day life just'cause I've experienced it so many times. It's not normal at all to me. It's definitely a abnormal experience. But as for fear or emotions that I felt, I really didn't set in with me until I was on the hospital bed until they were, uh. Putting stuff on me, different machines, lots beeping, lots of panicking and rushing. And so, you know, I tell that story about how I'm triumphantly marching in. And I think that sort of speaks to the, not cognitive dissonance per se, but just the difference in perspective. Because for me, once I took the epinephrine, it went from this experience where I can't breathe. Nothing feels right to clarity. And so I think that at least in the moment. Colors, the individual circumstances where they think everything is far better than it is, and so, but when you're on the hospital bed, when the epinephrine's starting to wear off and you're in other people's care, I think that's when it got real for me and I realized I am in danger. I am in the hospital. This is not good. Everything turned out well. I'm fine now, it's normal to me. It's not normal for the rest of people, and I think we forget that sometimes.
Dr. Amanda Whitehouse:It changes you and shapes you in so many ways, which are evident, in that story and in the way you handle that. And even in you saying it's kind of, it's not normal, but it's just part of life for you, unfortunately. Are you getting better? Is your, success rate improving over time in terms of reducing the reactions?
Devin Sailer:I would say that. You know, obviously I have a 100% success rate. I like to say with my, uh, food anaphylaxis, I'm still here. But what I would say is it's, you know, it's not bad to look at it from that lens, but the way I like to look at it is just avoidance is just my success rate in avoiding getting the reaction in the first place. And so I think I've gotten far better at not getting reactions, knowing what I'm allergic to. And, uh, my mother's told me stories about when I was young, the hospital was my second home. I was always having reactions, I was always getting tests. This, that and the third. I was a very annoying kid with my allergies. And so when you're not in the best financial situation, when you're a single mother with two kids in upstate New York, it can be very burdensome. It can be very difficult to navigate that. And so I think since I've had this lifestyle my whole life, I've gotten used to it. I've developed strategies I've developed. A way to center my life around it without it necessarily limiting my life. And I think that's the most important aspect is when we talk to kids and when we talk to food allergy parents, I think we far too often focus on the fear and the limitation of it. And I think it's the natural instinct of food allergy parents to wanna protect their kids, but also we can't smother them. We can't say You will never do this. So I bring up the example of. When a woman with all of her best interest, with all love in her heart said, you know, your son's a very impressive kid. He's got a lot of allergies. But you know, there was this other kid that I knew who went to Canada. Maybe your son will be able to do that someday. And now I have gone to Canada. I've also gone to about 19 other countries. And so I think it's not out of a place of malice or a place of pity, but even when we're speaking with the best of intentions, I think we sometimes. Put kids down when we speak like that. And so I think it's very important to remember these are gonna be adults someday and we need to help them and facilitate their growth as individuals and find ways to make life work for their allergies, not make them live life for their allergies. Yeah.
Dr. Amanda Whitehouse:Thank you so much for saying that. I love that. You don't have to be in the allergy box or whatever other thing. You, we as a, you know, other people outside of it think we have to pity this child or that they are limited by or because of. Right.
Devin Sailer:And that happens in school a lot is people, I've spoken to them at tag, at Cfar at this, that, and the third is what I hear time and time again is they don't like to be known as the allergy kid. And I think that's sometime a label that's slapped on people where they think, oh, there's Devin. He can't eat anything. Oh, there's Susie, there's Bobby, so on and so forth. And I, it's not dehumanizing, but it definitely strips some of their individuality in some sense. And they're just ascribed, here is a label. Here's what you are. This is how we'll perceive you, and we will treat you this way depending on the circumstances. It's not done. I think most of the time out of a place of malice. And I think that's very important to remember is sometimes people just don't know. I don't think we learn enough about food allergies. I don't think we learn enough about these very unique circumstances. And so that's something that I think programs like these can help to change and that's one of the reasons why I'm so glad to be on here to help if I can educate one person, I'm think I've accomplished my goal. Yeah.
Dr. Amanda Whitehouse:Well, I know you're educating way more than one person. You've so many other places besides here on this show With me. You're making such a big difference and I think showing through your life that you're not one dimensional, right? There's so much you have to do. There's no limits. So I was wondering if we can wrap up by you telling us what your goals are. I think we're gonna see big things from you in the future. What might they be?
Devin Sailer:Well, I hope that I can do big things in the future. My immediate goal is just to get into a good college. I don't know exactly where. I don't know exactly what, and you know, I'm okay with that. I think I just saw sort of gotta roll with the punches, see where life takes me, and adjust the sales. And so immediately. I wanna do good in my last year of high school, get into a good college, get into a good swing at college, and I don't want to be limited at college now. I'm not somebody who likes to party. I'm not somebody who loves going to the raves or whatnot, but I also want to have a good college experience. And I think if I'm able to do that and develop some tips, develop some habits, and then maybe teach some of the kids going into college or going into high school, how they can do that. I think that is going to be very rewarding for me and just some way where I can pass on my knowledge to the future generations and those who have had similar circumstances to me.
Dr. Amanda Whitehouse:I have no doubt that you'll be able to find a way to navigate that and do that. And, I'm saying big things in your future, but you're already doing big things and so thank you for that and all of the work that for everyone in the food allergy community. Last thoughts for the audience?
Devin Sailer:I would just say some final closing remarks is. To any kids out there, you, you can't let your food allergies define you and to any parents out there, you can't let your kids' food allergies limit them. You have to make sure you have the conversation with them. You have to make sure that you're letting them live their life to their fullest despite their food allergies.
Dr. Amanda Whitehouse:I know I, as a mom look forward to having my 14-year-old son listen to this episode, as you said, especially to have guys who are role models and talking about stuff like this openly is so powerful. Well,
Devin Sailer:thank you for having me on.
Amanda Whitehouse, PhD:Here are three action steps to take this conversation further. Number one, get involved with a local or regional food allergy advocacy organization. Many of these need volunteers. They need participants. They need student ambassadors, families to support other families, in creating community support and change. Number two, find Devin organization safe to eat. They're working so hard to ensure that children and families navigating food allergies have safe, reliable food options in moments of crisis. The website is safe to eat now.com. And last number three, share this episode with a teen in your life, or the parent of a teen who is managing food allergies. It can be very powerful for both young people and parents to hear from a teen like Devin who understands them and is an example of positive change. You can find links to everything we discussed in the show notes, and I really appreciate you listening and being a part of this community. As always, it would mean so much to me if you find the show helpful. If you would leave me a rating or a review and share it with anybody that might appreciate it.
the content of this podcast is for informational and educational purposes only, and is not a substitute for professional medical or mental health advice, diagnosis, or treatment. If you have any questions about your own medical experience or mental health needs, please consult a professional. I'm Dr. Amanda Whitehouse. Thanks for joining me. And until we chat again, remember don't feed the fear.
