Food Allergy Anxiety & Chronic Illness | Dr. Amanda Whitehouse on Trauma-Informed Care & Not Feeding Fear

What does grief look like when it lives inside a body that can't always feel safe? Dr. Amanda Whitehouse joins Nina to explore food allergy anxiety, trauma, and the layered losses that chronic illness brings.

Summary:

Grief doesn't only come from death. Sometimes it comes from a diagnosis. From the life you imagined slipping away, from food becoming a source of fear, from watching your child struggle to breathe and feeling helpless. That is grief, too.

In this episode, Nina Rodriguez welcomes Dr. Amanda Whitehouse, a licensed psychologist who specializes in food allergy anxiety, trauma, and chronic illness. Dr. Whitehouse is also a mother navigating food allergies firsthand and the host of the Don't Feed the Fear podcast. 

Together, they unpack the layered emotional experience of living with food allergies (anaphylaxis), including the grief, the trauma, and the profound work of returning to safety in your own body.

They also go deeper. Dr. Whitehouse shares the story of her brother Adam, who died from cancer in 2020, and what his death taught her about closure, connection, and continuing bonds with loved ones beyond physical presence.

In this conversation:

• Why grief in chronic illness is real, and why it often goes unnamed
• The critical difference between trauma, anxiety, and fear in the context of food allergies, and why language matters
• What trauma-informed care looks like for food allergy patients and families
• Common myths about food allergies debunked (including "avoidance is enough" and "epinephrine is the last resort")
• How to return agency to yourself and set boundaries with loved ones who don't fully understand
• The physical toll of grief on the body, and why that connection matters
• Dr. Whitehouse's personal grief: losing her brother Adam, the gift of time, and continued bonds in dreams
• Gratitude as awareness, not positivity, making space for "this AND that"

Connect with Dr. Amanda Whitehouse:

• Website: thefoodallergypsychologist.com
• Instagram: @thefoodallergypsychologist
• Podcast: Don't Feed the Fear

Whether you're living with a food allergy, loving someone who is, or simply navigating a body and a life that grief has changed, this conversation is for you.

Transcript

trauma always comes grief. think knowledge of trauma-informed practices and care is crucial because if you've had an incident where you have struggled to breathe or you were rushed to the hospital or you needed medication that you didn't have to save your life, chances are for most people, you know, that's going to be stored and interpreted as trauma to the body. You just lost your loved one. Now what? Welcome to the Grief in Life Podcast where we explore this new reality through grief-colored lenses. Openly, authentically,

I'm your host, Nina Rodriguez. Let's get started. How can we navigate chronic health conditions without letting fear consume us? Welcome back to the Grief and Light podcast. My name is Nina Rodriguez and I'm your host. And today we are joined by Dr. Amanda Whitehouse. She is a licensed psychologist who specializes in food allergy and celiac related anxiety and trauma. She's also a mother navigating this reality firsthand.

and she's the host of the Don't Feed the Fear podcast where she offers support, education, and practical tools for families and clinicians alike. In this conversation, we are going to explore how grief shows up in chronic conditions like living with food allergies, the toll of the constant vigilance, and what it looks like to support your nervous system while holding so much responsibility on a daily basis.

We're also going to touch on the layered experience of loss, including Amanda's own brother, Adam. So with that, I would love to introduce you to today's guest, Dr. Amanda Whitehouse. Welcome to the Grief in Life podcast. Thank you so much for having me. I'm so excited to chat with you. It's an absolute honor. And I've been looking forward to this in a strange way because I encountered your page, your Instagram page, where you provide a lot of this information because of my own experience with.

bizarre anaphylactic response last year with some of my listeners are familiar with. And you are a wealth of information. You offer a wealth of information on your page. But before we get to all those details, I do want for our listeners to know where did you get to know grief in the first place? And how has that evolved over time and impacted your work and your life? Yeah, well, it's such a tricky question, right? Because I think for many of us, we think the grief

enters our lives in one moment, usually in that big moment, and then we look back and we see the grief that wasn't acknowledged or that we weren't naming throughout our lives. And I think that's definitely true of my experience. Definitely. And you became my psychologist before the diagnosis with your son. So what led you to that profession? What was the gateway into that profession?

Is it something personal or was it something that's always interested you? I'm one of those lucky people that knew. My mom said I started staying at around middle school. I'm going to be a psychologist and I did it. I think people are fascinating and I wanted to help people. That's cliche, but it's very true of everyone I know in my profession. And then, yeah, so I was just new into my field when my son...

was born and then he had some health struggles from the beginning, but eventually got the diagnosis of multiple severe food allergies. And in connecting and seeking out support for myself, obviously was kind of connected with the local community and beyond, and people started hearing about me and finding their way. So as I was learning to navigate not only the safety, but the grief and the loss and all of the change that that diagnosis brings, you know,

I was doing it with my son and then I ended up starting to do it with my clients. So until I started my podcast, not even two years ago, I never had a website. I never had any marketing or social media because there's such a need. This affects so many people in so many ways that go beyond what we put in our mouths. And so I feel like I was kind of put in the place where I needed to be to help some people with something I didn't know I was going to be helping people with.

pretty rare even to find somebody, a therapist or a psychologist who is grief informed in the first place and also to be informed in the allergy world specifically to food allergies, right? So this is like a whole trifecta that your life experience and professional experience kind of merge for better or for worse so to speak because it's nothing anybody ever wants to deal with personally and also you're such a wonderful resource for.

the people that need it and it is a dire need as I'm, you my eyes are being opened to this world of food allergy. Yeah, it is. And I'll throw into everything that you just listed. The other thing that I think is so important that we don't talk about when we are beginning to have conversations and acknowledge it is the trauma that people with food allergies and everyone in their lives experience. And I think we don't give enough weight to those very terrifying experiences. And of course, with trauma always comes grief.

And so in terms of a therapist or a psychologist in that space, think knowledge of trauma-informed practices and care is crucial because whether or not people acknowledge or realize that that's what they've experienced, if you've had an incident where you have struggled to breathe or you were rushed to the hospital or you needed medication that you didn't have to save your life, chances are for most people, that's gonna be stored and interpreted as trauma to the body. So it's really complex.

Absolutely, and I love that you address the nuances between trauma, anxiety, and grief, and how do we navigate all of these. are big on anxiety. I was listening to your show, which is fantastic for anybody who maybe wants to get more educated or wants to know how to navigate the nuances of life with food allergies. It is so helpful. So let's touch on that for a little bit. Why is using the right or the

appropriate language around anxiety so important in navigating life with food allergies or just life in general, to be honest? Yeah. Well, I think that we have to call something what it is in order to approach it in the right way. And traditionally speaking, when we as psychologists address anxiety, the biggest technique that has been demonstrated to be effective is cognitive behavioral therapy, which addresses how our behaviors and our thoughts

are connected to obviously our wellbeing and our emotions. And so if we treat everything that someone with food allergies is experiencing as anxiety, as just a worry or a fear, then we are underestimating the reality of the danger that is constantly present for them. We risk, and good psychologists can use CBT effectively, but with an awareness that we...

do need to have some behaviors that protect us. A certain amount of vigilance is necessary in order to stay safe. And a lot of people find their way to me having sought out therapy and having the therapist really approach it in a way that was challenging and not intentionally, but kind of judging and dismissing the steps that that person was taking in order to keep themselves safe because they don't understand the medical condition or the severity or the real level of risk.

So I think that's the first important step. And then, as I said before, then if we treat what's actually trauma as anxiety, we're not necessarily using the most effective approach because trauma treatment and trauma-informed care is very specific. From my approach, it's very nervous system-based. We're learning more and more about how trauma, you everyone knows that line now from the famous book, the body keeps the score and the trauma lives in the body. So if we are only addressing the trauma through our thinking and our thoughts about what have it.

what we've experienced, the nervous system will override that thought pattern every time in order to protect us. It's designed to keep us safe. And so we have to create safety in the body. And then of course with allergies, there's that overlap. So if the nervous system is very vigilant because of the danger we've experienced, that creates a certain response in the body. It makes us more reactive. And all of the symptoms of anxiety that we can experience are also the symptoms of an allergic reaction.

So our bodies are primed to jump and interpret and respond to the things that we are experiencing. So we have to call it what it is in order to know what the most helpful thing to do is. The accuracy is really crucial. Thank you. And those differences are important. And having experienced this myself, to put it very bluntly, I thought I was going to die. And when you have moments where you really do wholeheartedly think, this is it for me, like goodbye world.

and then you survive it and then your system has to integrate what just happened. It quite literally took me a week and I'm so grateful somebody in the food allergy community said, hey, give yourself a few days to process this because there's going to be a bit of an aftershock here. And I'm so grateful she said that because I thought, well, the danger's over, I'm okay now. It took me about two weeks to calm myself down and come back to center. So the fact that you're saying that, you know, the trauma and the sense of safety.

is more in the body, in the nervous system. It is so, so true. So how can, from two perspectives here, your mother navigating this with your son, your child. So as a mother, speaking to perhaps another mother dealing with this similar reality, and as somebody who's gone through it myself, so to the person who experienced this firsthand, what would you say to them about that return to safety in the body?

I mean, the most obvious response that everyone hears, but we can't say enough, is to learn to trust in that epinephrine. Because it genuinely, as you said, you thought you were going to die. And at the risk, thank you so much. EpiPen inside her pouch says, for those who are listening and can't see it, I love that. We are so afraid of that medication.

Collectively, we use language that makes it scary. say, when my son was diagnosed and everyone was talking about, what do we need to do to keep him safe? People would constantly say things like, well, I don't want to have to be the one to jab him with that EpiPen. Creating so much fear around it. And when you shift that, and perhaps you know this if you got epinephrine after your reaction, the way that that feels in your body, you know that that equals safety.

Did you experience that relief of that medication when it? Absolutely. Within minutes, absolutely. So yeah, if we can remember and focus on that, and if we have that medication with us, and we trust in it, and we know when to use it, we're confident when the time is, when we don't feel like we're going to be judged or shamed for using it. know, thinking like, what if I'm overreacting? And those are all really real judgments and shame that are put upon us sometime. But if you can just bring it back to always knowing the

best thing that I can do to make sure I'm safe is to have it and to know when to use it and when in doubt, use it anyway, it won't hurt. You know, I mentioned to you before, I have to be careful about not giving medical advice, but this is just the most broad, you know, fact of life living with a food allergy is that that is the thing that will save you. Because saying to someone, you know, as you said, like, I felt like I was going to die. Death is a reality for food allergies. Fortunately, it is very rare.

but it does happen. And saying that to someone who knows that that's a possibility for them doesn't make it any less scary, right? Saying like, well, it only happens this many out of this statistic doesn't make it any less scary, especially once you have experienced it. So as the patient yourself experiencing that reaction or me, like as a mom and holding that trauma of, I mean, there's nothing like holding your baby who cannot speak to you, watching them struggle to breathe, watching their face and their airways swell shut.

and I didn't have any epinephrine on hand when he had his first reaction, that first experience and that ambulance ride will live in my body for the rest of my life, no matter how statistically unlikely it is that he is going to die from his food allergy. So I think I'm getting myself off track here. There's so much I want to say to people who are experiencing this on both ends, but I guess what I'm leading toward is it's real.

and work on the mental health, you deserve support, you deserve understanding and room to process your emotional experience that's really valid, and do the things you can do to keep yourself safe, and that up and effort is number one top of the list every single time. Thank you for that, and this is a broad topic that really needs a lot more attention.

And I'm grateful for any light that we can shine on it, especially through your both lived experience and professional experience. And thank you for that caveat. This is not medical advice. Nothing in here is medical advice. Always check with your provider, absolutely. And let's back up a second, right? Because we're all talking about like all these, basically what we need to do and everything that comes after. But for somebody who's just learning about the nature of food allergies, like for example, myself, the biggest point.

of confusion was I've never been allergic to anything in my life. So how come I had this sudden onset of anaphylaxis? Where did that come from? And people tend to downplay it because they say, it's in your head. It's your mind. It's your anxiety. It's your this. And I was like, well, know, epinephrine brought me back. So for people who are learning about food allergies in general,

And why is this more than just sniffles? Why is this more than just something that you can take a little Benadryl and be okay and go about your married day? What is the difference? Yeah, it's not just about managing the medical care, whatever that may be for you and wherever your diagnosis lands, even once you have a clear answer, which is hard to get to in the first place. You mentioned you're kind of experiencing that.

For my son, it went on and on with, there are more foods and now he's reacting to, like, my son was extremely sensitive and I don't share this ever to scare people, but to acknowledge, you know, he had a reaction at a baseball game when he was still in a carrier. He didn't touch anything. He didn't eat anything. So airborne reactions are extremely unlikely. I don't like to spread fear around that, but for the people who have experienced it, they feel dismissed. They feel like it's not real. We would, he would touch, you know, library books and get a rash. We would go to...

and he would wash his hands in the bathroom and the rash would spread. I mean, we had so many mysteries happen that aren't that uncommon for people with food allergies or the whole spectrum of allergic diseases. So you don't often have a clear answer, at least right away, in terms of what could cause a problem and what's severe enough to be dangerous versus an inconvenience. So I think that's the first hurdle that a lot of families face. And in facing that and seeking that,

answer if you ever get to one, which hopefully you do, everything about your life changes. Not just what to eat and what to avoid and what medication to carry with you or how to manage it if you are accidentally exposed. But food is central to all aspects of our life. I come from an Italian family, but just about every culture has some way that food is family, food is life, food is caring, food is grieving. What's the number one thing we do when someone has a loved one who dies?

We show up. That's the role, that's, people don't often, and that traces back even not just in death experiences, obviously, but like when my son was diagnosed. I know neighbors whose children had some kind of a medical event or something scary happened to the family, not just a death, but, and everyone rallies around them and let's get them a certificate for this pizza place and let's make a basket and let's care for them. And it's not about the items, it's about the love and the caring and the expression of.

of support. When my son was diagnosed, people didn't know what to do or how to support me. And some people found gestures that were safe for us, but that carries throughout life, not just in that moment, but family gatherings, school attendance, socialization, which changes through life. What you eat and what you don't eat really affects everything. And that's where the grief comes in, right? Because now life...

not just what I can feed myself or what I can feed my child, but my entire life now looks different from what I imagined that it would be. And that's grief. That is a loss that takes so long to process. And it's doable, but if we don't do the work, if we don't acknowledge or realize that that's the process that we have to move through, a lot of people can really struggle with that for a long period of time because they have lost.

everything they imagined that they thought they could give their child and that their family would be and what they would do and what the life that they imagined was. Thank you so much for naming that, all those points. There's immense grief in navigating this reality. And even as I was going through my own, had these realizations as I'm searching, like, what is this? And for the record, my trigger was airborne. It was something that I smelled. It was the smell of shellfish being cooked very close to me.

So it absolutely does happen even though it is prayer. It can happen even though you've never been allergic to anything because of bodily changes and other things that I'm still understanding. And it is very tricky. So I really, really appreciate you naming all of that. And I would also like to address some common myths, if that's okay with you, keeping in mind for our listeners, this is not medical advice. This is for awareness. And you could always do your own research. We're actually going to link a few resources in the show notes as well.

So you can learn from that. So one common myth is that food allergies are just a mild inconvenience. They're not life threatening. What's your take on that? Right. Well, as I just touched on, it affects everything. So if you want to travel, if you want to work in a certain industry, if you want to study at a certain college, any decision that you make that is central to your life will be affected by the fact that you're living with a food allergy. It's doable.

here to discourage anyone and say that you can't do it, but there is effort and thought and planning for almost every aspect of life, whether it's a small daily action or a big, huge life decision that will be affected by the food allergies, let alone then the emotional experience that we touched on, And how the world feels when you're managing that. Incredibly threatening. I remember going back to to restaurant for my first time and I didn't know what to do. I didn't know where to sit.

I didn't know what to I looked at everything everybody was eating. Is there shellfish in there? I felt like a panic attack. It's really, really disorienting. And that's why getting a hold of your sense of clarity and safety and awareness over the panic and the, you said like, don't feed the fear side of it is so, crucial. But even how you say it touches on everything, I even thought, what do people do on planes when they're traveling or?

If somebody consumes something and they give you a kiss on the cheek, is that enough to trigger a response? So on that note, another myth is, a little bit won't hurt, Amanda. Can I just give him a little bite? it's so, you know, let me address the emotional aspect of that first. The way for everyone listening, the way that that is experienced to the person with the food allergy or the person protecting the person with the food allergy. When you say, well, can't he just have a little is so

invalidating. know, if someone says to you, this is what I need to stay safe, stay safe, and you immediately respond by challenging that, you are no longer a safer, trusted person for us. Even if you listen, you know, ideally, if you say something, because you're uninformed and truly, you just need to be educated, I hope that you will listen to the response. But anything anyone is ever struggling with, don't respond to them by questioning what they're saying that they need from you. Because whether or not it's factual, which in this case, it's

Absolutely a hundred percent factual that person's trust and sense of safety in you will be gone and with food allergies Truly everyone's threshold is different for reactivity But they are the expert on what they need right and what is safe for them And if they they don't want to be restricting their life farther than this necessary So if they are explaining to you that that's not okay for them

It's for good reason and it's based on their experience and what their doctor has told them. Like, trust me, I don't ever want to take my kid to a party and be the mom who has to say, you can't eat that, we can't have that, I'm sorry, we can make that homemade at home later, we'll find a safe version for you or here's yours, everyone else is eating that. So if we're saying it's not safe, it's not fun for us either. And we're really asking for something that we need. So not true, absolutely invalidating when people ask that question of us.

very, very invalidating. What about, kids always grow out of that. Don't worry, your kid's going to grow out of that. Yeah, unfortunately, most people don't. And many people, unfortunately, as you've been learning, grow into it. You know, people think that they're kind of in the clear and don't care about this cause, but many, many adults develop food allergies all through their lives. Some people grow out of them. I had food allergies when I was a child. I never had a severe, you know,

problem like my son and many do, but I grew out of my food allergies. Ironically, at some point during one of my pregnancies, I went into motherhood allergic and came out of my pregnancies with no more food allergies. So the joke that's not that funny to some people, but to us it's funny, that my son, how nice of him he took them from me.

You know, that's a dark joke. It's like funny not funny, but I mean, it's not good for you and also. Yeah, it's not funny, you you it's like the kind of thing in our home we use language to cope, right, to process. But I got myself way off track with the answer on that one. Yeah, some people can outgrow. It depends on the allergen. You know, I'm not I'm not a doctor, so I won't comment too much on on when you can and can't.

It's possible. There are also treatments now for food allergies, which is one of the things that I'm really motivated about. So hopefully, yes, that person will outgrow. Most of the time, that's not the case. Or if people have multiple food allergies, they might outgrow some of them and not others. And the good news is that there are things that we can do about it to live a life that's much more mainstream. But those aren't right for everybody either. So again, if you're the person asking, well, what if he'll just outgrow it? It's no big deal. If we tell you that it is, trust us. It is.

Yes, trust the person advocating for themselves or the parent advocating for their child. Okay, so another myth. It's the same as a food intolerance or sensitivity. So there are some foods that just give us a little bit of a belly ache. I might be lactose or something like that. Why is that different than a food allergy, a severe food allergy? Right. So it's an actual severe food allergy that's IgE mediated is the terminology that allergists use to diagnose or to distinguish.

can lead to anaphylaxis. Anaphylaxis is the life-threatening reaction that we can have to an allergy, which carries obviously different medical complications and risks, as well as a whole basket of emotional experiences that are challenging for us. I don't like to compare some people's challenges, but if you have an intolerance, that is not something that's going to threaten your life.

People also get confused with celiac, and celiac is also a very serious medical condition. People with celiac don't necessarily have anaphylaxis, but they can have severe reactions with digestive issues and severe...

issues that will last them. Some people for weeks will react to just a minute amount of gluten in their food or cross-contact. So that's another one that I think people tend to dismiss, like, it's celiac, it's not a food allergy, so you're not going to have anaphylaxis, but you might feel like you're dying for a couple of weeks until your body clears that and it can cause real intestinal damage too. I like to throw that into the conversation too because it's different, but it similarly can be debilitating and very serious medically.

It's not a preference. Again, we don't like to be this way if we don't have to. Thank you for naming that as well because people tend to minimize and it's like, you're just being a picky eater or stop being so sensitive. And it's beyond that. I know that sometimes it gets diluted in the public discourse and some even like memes and funny things come out of it. But it's not funny when you're the one experiencing it. And it's actually a terrible experience that rewrites and reshapes how you show up in the world and how sometimes even your family has to adjust and adapt to help you.

So another myth, we got two more of these. Avoidance is enough. You don't need to worry beyond that. So you could just avoid it and you'll be fine. Well, until you've lived the life, you don't know. So I think most of us have something in our lives that we feel like people just don't understand until they've walked in my shoes. And this is ours. So I mentioned earlier about some of the experiences that my son had that had nothing to do with what he was eating. And he was having reactions. And then I'm left.

to kind of distinguish that. people don't think about cross-contact in kitchens or kids' hands who are doing a craft. Think of all the crafts that kids do in school that involve some food. people think of peanuts and tree nuts are the most commonly recognized, but milk, dairy, wheat is in Play-Doh. I mean, I could list, we could have a conversation for two hours about all the random places.

that those of us with food allergies have discovered are allergens. I'll give you mine. My favorite, not my favorite, my least favorite, most surprising, my little boy and I were in the backyard blowing bubbles. And mom got kicked in and was frantically searching for what could be causing this. There was peanut oil in the little bottle of little kid bubbles that he was blowing. So he developed...

In retrospect, my doctor told me I should have used his epinephrine because of the severity of the reaction from blowing bubbles. He wasn't eating them, but were they on his hands? Did he get a little bit in his mouth? Maybe. Must have. Or was it a contact reaction? We'll never know. But that's the, you can't just avoid it. You can't anticipate. But we try. And that's where we get stuck in this anxiety loop is we're trying to anticipate all of these mystery places and unexpected ways that these allergens can show up and cause real problems.

you know, without us, we can't ever predict all of them, but it's everywhere. It's difficult to avoid an allergy. Some of these things are insidious and where they're found, but bubbles, my goodness, that one's new for me too. And that's what's tricky, it's we think we have it covered because we read the label, we warned everybody around us, let's say best case scenario, people get it and they're being mindful and respectful about it. And also, you can control everything. There are elements that are going to surprise us like

bubbles, right? Yeah, well, and I'll add to that too, just to, you know, those are some people may be like, those are really extreme examples, and those are unlikely to happen. And some of them probably are. But the other thing that you just touched on, like even reading the label isn't always surefire. We have a mess in our, I mean, you know, we're in the US, our food allergy labeling is not great right now. It is a big deal. And people you don't know unless you live it. it's not as simple as you might think.

And there's a long way to go on that as well. So if you're looking to be an advocate for someone in your life with food allergies, pay attention to that. Speak up for better food allergy labeling and any of the laws that come up for protecting us because that's another one that even what's actually in our food, it can be difficult to determine. on a positive note, thank you so much to every restaurant that facilitates the labels or is helping people with food allergies.

navigate a pleasant experience at a restaurant, especially with families, kids, all the things so that we can enjoy a meal, break bread together, and not have to worry about, is this going to send me to the hospital, right? I discovered some applications that help you navigate certain restaurants and locations that are helpful to people with food allergies. So that's always helpful. I don't know if you've found any that are.

particularly good. You know what, I don't want to miss one awesome one. There are actually a few that are really great and I'm not like sponsored by anyone. But yeah, there are tools. There are, I've met so many amazing people doing this work who are creating, most of them are moms or food allergy patients themselves who are creating things like that that can help you. So there are apps for restaurants. There are so many great, you know, different angles of advocacy that are making life easier. And so yeah, you got to get out there and connect to people and find it. Definitely.

The last myth we'll dispel today, there are many more, but this is good for today, is epinephrine is the last resort. Why is that a myth? Right. Well, again, being careful not to venture into giving medical advice. Number one, epinephrine is the only thing that will stop an anaphylactic reaction. So as far as your peace of mind and knowing that you have it with you all the time, knowing when to use it, that's the best thing that you can do to feel like you are prepared since you can't control everything.

that I always say be careful, not fearful. Being careful means knowing that you can be prepared to react, to respond to anything that happens. But the general advice, again, this is out there everywhere that you read about allergies if you're looking in reliable sources and locations, is that taking an oral antihistamine,

will not stop anaphylaxis if it is progressing. It might address the symptoms, but epinephrine is the only thing that actually stops that systemic reaction. Your body is attacking a food mistakenly as if it is a threat, and it is a full-scale immune attack in response to that food. So antihistamines don't do it. Epinephrine does. We say epi first, epi fast, or when in doubt, epi, because that...

won't hurt you if you had some symptoms but you weren't quite sure. People say all the time, all the doctors that I speak to will say, you know, it's better to epi and figure it out later. It will not cause harm to your body. Our bodies make epinephrine naturally. So it's a substance that we can, you know, handle and that will make sure you're safe if there's any doubt at all.

Yes, and this is part of what you learn, right? Because when I was feeling the symptoms, for example, I took a Benadryl because in my mind, antihistamine, Benadryl, should be fine. It was when I got the epinephrine that I literally felt like my body was stabilized once again. So it does make all the difference in the world. And you go from fearing for your life to taking a breath that feels like you're

borderline board again. It's the weirdest thing. It's really bizarre. But where I learned about epinephrine is in the movies. Like something happens or media or a show, something happens and it's very dramatic. And it makes it feel like it's something that I don't know, like paramedics do, right? Like that's something administered in case of emergency by a professional. What I learned since is, like you said, epi...

What was it? EpiFIRST? EpiFAST. EpiFIRST, EpiFAST. And don't overthink this. If you need to use it, use it. That's it. It's better to use it and say, oop, I really didn't need it, than not use it, because timing is so crucial. And on the topic of epinephrine and epi, I saw a post you recently did about why we shouldn't call it...

Why we should call it epinephrine? Interesting. I'm newish to social media, so I never know what's going to catch. And things that I never expect people to get heated about get heated, but this is one of them. People are familiar with EpiPen because that's the one that we know about the longest. It's been around the longest. We are really fortunate that we're at a time now, instead of just having one option, we have multiple devices. So what my fear, particularly for children.

I teach my son to say epinephrine because if he's having an emergency and he's in a situation where I'm not with him, if there's a crowd of people and if he's saying, need an EpiPen, does anyone have an EpiPen? Well, someone has an OVQ or a Nefi or a generic Tiva. They might not know that that's the same thing or if, as there should be, we're moving toward where stock epinephrine might be on hand in schools and in things like that. We don't want to create the misconception.

among patients or among the general public that those are different medications. We want them to understand that epinephrine is the only medication that will treat anaphylaxis. Any form of epinephrine is better than nothing, even if it's not dosing, they'll even say is not as important as getting that medication in someone. So basically anything that could prevent people from getting the medication quickly and time is of the essence. And that's one thing that potentially could be an issue. And I think too,

It's good to have competitors is all I'm going to say in terms of the market with epinephrine. There were some complications with EpiPen, like some of the prices being inflated and some there were lawsuits against the manufacturers of EpiPen and a lot of people didn't like what was going on and are choosing other things. And so we don't want to call them Kleenex anymore when they're tissues. We just want to call the medication what it is so we're being really clear about what people need when they need it.

Thank you. And that's something I learned as well, that it's, again, when you're not faced with this, you just have very general knowledge of these issues and the solutions. And in my mind, the solution was always EPI. I didn't even know there were alternatives. So like you've named a few, the Nefi, the Abiqui, and some others that may or may not hit the market soon. Hopefully they do. So it's good to have these points of reference as well. I think we laid the groundwork for what it is, what the fears are.

what the layers are that families need to navigate, whether you're a parent or you're somebody going through it yourself. Now, how do we return agency to ourselves? How do we communicate boundaries with families and friends and coworkers? I really, really loved an episode that you did about the anxiety of it and how we should focus more on clarity over fear. So these distinctions may seem so subtle.

they do make a huge difference. And I'm actually going to link that episode because it was really helpful in reframing how do we navigate in a way that we feel empowered and we're not scared of every move going about our daily life. Yeah. The thing that I will say first is that I think a lot of that hesitation that you're describing and that uncertainty comes from our perceived, and often it's very real, judgment or shame or misunderstanding.

from other people. So most people that I know with food allergies who are a little bit unsure to speak up or who are hesitant, it's not because they don't know what they need, but it's because they are concerned rightfully so with the way that other people will perceive them. You you mentioned the way allergies are portrayed in the media. I mean, if there's a stronger trope than like the nerd with the peanut allergy, I don't know what it is.

You know, and it's we need to fight that. But I think people don't want to be the weird allergy kid. You know, they don't want to be perceived as being wimpy or not strong or needy or bossy or controlling. There's so many words that get to apply to us. And so I always bring it back to when I'm working with clients, everybody has the right to ask to be safe. And so all you're asking is for you to stay safe. What it requires for you to stay safe is maybe different from other people.

But it's actually the same as a lot of people because food allergies are really common. So I think when we shift and we start noticing that and noticing with kids, like, OK, what's a friend? What's a good friend look like when you have food allergies? And kids encounter this in a lot of situations. And unfortunately, this is where it comes up if you have food allergies. But let's learn what a good friend is and who to stick to and who not to. And then that begins to make it feel valid when you surround yourself with people who respect

what you need and it's mutual and you respect what they need and it might be something totally different. It's kind of like those life lessons that we need to learn through the, you know, what happens to be the subject of allergies. I think that's what helps people start to learn, you know, this doesn't define me, this doesn't say anything that's true about me. If other people see it that way, that's about their misconceptions or their ignorance and not about me. But I have a right and everyone has a right to be safe, to be included in a meaningful way.

Thank you. And I love that you mentioned how, you know, sometimes we can become a bit obsessed with checking the labels with triple checking, checking it 10 times. And that anxiety can feed and build upon itself. And then the thing that brings your anxiety down is more the feedback loop than the facts. I loved that part because it's such, it just unpacked what gets really screwy when you have a traumatic response.

And when you're in a similar situation and your memory goes back to that traumatic response, so how do we smooth out that knot, if you will, that we can feel emotionally and physically? Right. I think really the most important part that I mentioned before is that incorporating the nervous system, understanding I can tell you you're safe, but what tells your nervous system you're safe? And that's a different language that it speaks. So naturally, your body's going to respond.

you know, if checking the label feels good and I feel relief for a moment, then we start to associate the relief with the checking and not with the fact that we have confirmed that this food is safe for us. That's just how our nervous systems work. That felt good once, one check felt great. I'm gonna just check a couple more times just to be sure. And the reality is, unfortunately, we can't control everything as we said before, but we can confirm safety and then start to notice and understand how the nervous system works, how it responds.

What does it feel is telling me I'm safe right now and then speak to it or work with it in that way instead of letting it take over. You know, it's real. It's that trauma or that anxiety that lives in the body is very powerful, but we don't have to let it drive the bus. We can still acknowledge it and then work with it in the way that is effective for it. Thank you. And I know that people work with you to walk through these processes and

their own life. So how can somebody that's listening and relating work with you in what capacity and how can they get a hold of you? Yeah, so I'm easy to find at thefoodallergypsychologist.com. I'm active mostly just on Instagram and Facebook at The Food Allergy Psychologist. And then I have my own podcast, as you mentioned, called Don't Feed the Fear. you know, different content in different places. But I do groups, I do, you know, different activities, I'm working.

on the podcast constantly. working on a book to help people who are pursuing treatments for their food allergies, which is something that there's really not much support out there for. lots of different options for people who are looking for somebody who gets it. that will be linked in the show notes and I will be one of the first to read your books. Thank you very much because I love the way that you communicate the reality and the solutions and ways that we can empower ourselves.

I want to give some time to talk about the loss of your brother as well as somebody who lost her brother. could relate to that. So I want to give some space in this conversation for that, starting with who was Adam and whatever you want to say about the way in which he left and lived. Yeah, thank you. Yeah, and I want to thank you while I have a second for your podcast because similarly when you found my stuff, you're like, that's validating. That's how I felt when I found you. And it just seems, you know,

I feel like we find the places where we're meant to be in terms of what we need to connect on. So that felt really nice when we connected. my brother's name was Adam. He died in 2020. He had cancer. And as I said, kind of at the beginning of the podcast, and then I dove into allergies as I tend to do. that's kind of the point that I wanted to make of how the grief of his death made me realize there was grief all through my life, including with

what I've gone through with my son. So prior to my brother's illness and his death, my son had been going through treatments, going through oral immunotherapy, which is a treatment that basically allows you to tolerate your allergen. So like safety and freedom were ahead when my son reached his maintenance in this program. And one of the things that he and I talked about was how every year at Christmas or my birthday is what was my wish. And it was my wish for my son to not have his allergies, right? And then my brother, Adam, got sick.

And it was pretty clear that he was not responding to his treatments. And we had this beautiful, really bittersweet and very emotional last Christmas that it wasn't obvious, maybe it was obvious to some of us and not others. It wasn't really said outright, but he knew and I knew and a lot of us knew that that would be our last gathering. that anticipatory grief, knowing that he's going to die, knowing

some of the impact of that was a really complex process to be in. So the timing worked out where my son reached maintenance, had his last appointment with the doctor, where we celebrated. ate Reese's Cups together as a family at the doctor on the way to my brother's memorial service. And I look back on that Christmas and I talked about this age appropriately with my kids, how my only wish ever in my life

came true. And that Christmas when we were having our last time together and treasuring that, if I could have changed that wish, I would. And it's not to tell anyone, like, be grateful or to compare our griefs and our losses. But the thing that's the worst thing you can imagine can change when life changes. And so obviously, I wouldn't wish that on my son, but I wouldn't wish that on my brother. And so we had a really, like I said, a beautiful

a window of time in which we were grieving in advance, but he also was making closure with the people in his life. One of the things that happened to be really difficult between he and I was the management of my son's food allergies. And he was a person who didn't quite fully understand it. Family gatherings weren't always easy because of that. And one thing that was really healing for me that I appreciate was that when he was...

know, thinking about his time and his relationships with people that became clear to him. And so to have a discussion of that with him and have him acknowledge that and kind of have some resolution around that, I'm so thankful. It is really healing. And obviously I'm talking about me more than my brother, but I share that because...

He had this gift of time, is what he called it, of knowing. And he would say, like, everybody's going to die, but who gets to know that they're going to die? And who gets a chance to say goodbye to everybody and leave things the way they want to? So that was a really beautiful part of the way he died and one of the things. So we didn't get to have a funeral. We had kind of a memorial service that I referenced where he lived, which was far away from our hometown and all our family and our community.

We intended to have a funeral in our hometown, but then of course, 2020, COVID hit. So there's another layer of grief. One of the things he had asked me to stand up and speak at his funeral, which I never got to do, but one of the things that I was going to say was, you know, our brothers are our first teachers. So he taught me what the cool music was and he taught me how to get into trouble and he taught me all these other things. He also taught me how to die. And I learned so much for him, which I...

I don't want to ramble, but I'm happy to go on about what that experience was like. you know, his death experience. But it's hard to think about when you ask me about my brother's death and tell me about him to say it was really beautiful and it was really healing in a lot of ways, in addition to painful and obviously, you horrible at the same time.

I got emotional when you said that about the gifts of time and he taught you how to die basically. And I know what you mean in the sense of when somebody is very near to the lost and it's shocking and all these things, this can seem very jarring and almost like very sharp against the heart when we talk about the beauty of loss or death or the beautiful side of it. But we are years from it and can look at it from a slightly different perspective. And there's even a sense of gratitude, it sounds like.

Yes, they are first teachers or some of our biggest teachers. I feel the same way about my brother and the fact that he saw it as the gift of time, the fact that he had that awareness and that perspective that could be offered at such a painful time that carries so much like the gift of your son, you know, getting through the one thing you prayed for and also being faced with the loss of your brother. So it's like this, this and that carrying all of it. And

Would you say that you had the ability to say goodbye? Would you say that? Yeah, we did. He and I had many conversations. He was in treatment for about a year before he died. so, yeah, we had a lot of conversations. he liked, so Adam was an artist. He was a designer. He was a photographer. He liked to have big talks about big ideas. And so that was something that we always tended to do when we got together. But he wanted to talk about it.

And I teased him because every time we did he would talk about how he didn't need therapy, know, he's talking to his psychologist sister and saying like, I don't need therapy, you know, facing my death. But he really, he worked through it in his own way. So yeah, we said goodbye in those conversations. We had over time several conversations where he apologized to me, where he explained.

insights that he had gained to, you everybody has stuff with their brother and he explained to me what his was and what his perspective was on us and the dynamic between us, which was, I mean, to me, it was definitely a gift. And then that last, this is where I'll get emotional, because this is, you know, I talk about what's in our heads and our thoughts versus where the things live in our bodies. And as much as my head has processed it, my body.

will never leave this moment of saying goodbye to him when we left that family gathering for Christmas and just hugging him and knowing, like, how many people, and again, it's a blessing and a curse, but how many people hug their loved one knowing this is the last time I'm gonna get to hug this person and tell them I love them and say goodbye to them? And so that was, to me, our final goodbye, and we both knew it and we didn't need to say it. There were kids around, it was emotional enough as it was.

But to me, that was our goodbye. What a powerful moment. And thank you for sharing that with us. Also bittersweet. There's nothing you can do. And what do you say? Like you said, it's just that knowingness. And he just sounds like such a beautiful person. Creative, artistic, kind, has this deep understanding of life, it sounded like. I know you've mentioned that one of the paintings that you have, is that the one I was going to ask you for?

Beautiful. Yes, thank you. So that's Adam's painting for everybody watching on video. We honor him through this conversation as well. And I thank you for sharing this side of grief and loss. We got the perspective of living losses or living grief with the things that changed and shift in our lives because of chronic conditions and food allergies and all the things, and also the grief of the loss and also the love. And I'm curious, have you experienced

Continued bonds with Adam. Have you experienced a sense of connection that you would be open to sharing before? Yeah, it's a little bit vulnerable for me to share But I think this is you know, it's all about grief like there's just layers and layers of grief that continue to unfold and I I have Begun to have experiences where I do feel connected to him. That's not something that was ever a part of my life before so here I am living as

I'm a psychologist, I'm trying to be a respectable professional, and not that you can't be, but of course this is just my own self-consciousness about it. And even before he died, I'd started, but that connection after he passed away, it's very clear to me that we are connected, that he is around, and I do feel vulnerable sharing this, but I will, because I think it'll be helpful for people. He was very caring.

in preparing for his death, I can see looking back how each person in his life, prepared them in the way that I think they needed to be. And I don't want to, I just want to pause and say I don't want to gloss over, like this is my experience of my brother's death. Like he, you know, had a son, a beautiful young son who, you know, did not obviously deserve to lose his dad. And so I just want to honor that that's very different and it's not all roses and joy of maintaining, you know.

connection or having the closure that we wanted. But that said, with me, I think he knew and saw the layers of grief. And I think if we want to get spiritual about it, I think he knew what was ahead. And what happened for me that unfolded, and I think you probably can relate to this too, you I've got that grief with...

with my son and the grief of my brother's loss. And then there's even a kind of grief like with my son reaching treatment, like what does life look like now? This has been part of our identity. then COVID hit. And then what I didn't know was ahead, but my brother communicates with me through my dreams, I guess is the best way that I can say it, but he comes to me in my dreams. And of course, at first it felt like, it's so nice, know, like we're...

remembering him or I'm emotionally connected, but he wanted to make it very clear to me that he was there. And he basically shared with me in a dream that specifically it was going to be a rough time after. So he died in 2020. In 2021, my grandmother died. And back to his inappropriate jokes, he made a joke before he died about his

that he was raising grandma to heaven basically because she was old and we knew that she might not be around much longer and some people in the family didn't take it well but that just kind of illustrates how he was about all of this, like I'm gonna beat her. So the dream kind of came in that context and then the following year after she died, my other grandmother died. And he, I'm telling you, to the day in the dreams, in this one dream explained to me, here's what's gonna happen, it's not done yet.

This is like grandma's gonna die. This is when, and it was on Christmas and he told me that it was gonna be on Christmas and then the following year. I'm connected to him and I feel supported by him in the grief because of that and many other experiences that, know, I think I have found a lot of people have experiences like that and they just don't share them because it's not kind of mainstream. But I'm so thankful for it and certainly that's part of what's helped me too.

Navigate it navigate the difficult parts of it and I'm also six years out from it So, you know, I don't mean to sound too chipper and cheery about it. It's really hard still sometimes but that connection is there and I believe that that our loved ones are not gone and I know I not believe I know that that's the case and that's really powerful for me to have experienced you so much I

Really appreciate you sharing because you're absolutely right. I feel like there's a hesitation in people expressing what they are experiencing and it's very real. That connection really does live on. So I thank you for that. And I absolutely believe they visit us in dreams. If we're open to it and had a similar experience before COVID, before we even knew about COVID, my brother came to me in a dream and said, the future will require you to be flexible. And very long story short.

that helped me get through many things because of the understanding that, this is part of what's going to unfold from now on. to hear that your brother said to the day it sounds like about your grandmother's passing, like, come on. That's a really meaningful encounter. So thank you very much. I want to be very mindful of your time. I could definitely keep talking to you. And maybe there will be a part two when your book comes out. But I want to give you the floor to maybe include something that we didn't touch on. And if not, we can wrap up the conversation.

Well, maybe I'll drop the hint of what we can talk about in the future. But I think just as I'm talking about the layers of grief, one of the things that we didn't get to that I think is relevant to your experience and so probably to your audience too is that I just want to back in my psychologist hat on, not my brother visits me in my dreams hat, that the effect on our bodies is very real when we are grieving. And so another layer of my grief was that

With all those changes happening in my life, I fell into my own journey with chronic illness that I hadn't been experiencing before that. And when I heard about your experience and how your body could change, I just want to acknowledge the reality for people that this has a very real physical medical toll in our bodies. And that is why it's worth talking about. That's why spaces like your podcast are so important so that we can process these things and feel validated and connected.

That doesn't mean that we can always prevent it from happening. But I think that, you know, these topics that we're talking about, you and my very different shows, are all so intricately connected. That's another piece of it that I think people really need validation on because that's a common experience that we don't talk about very much either. So maybe someday we can dive deeper into that. I would love to. And I think definitely there's going to be a part two because it is incredibly physical. So thank you.

for being you, for your work, for all of the wisdom you impart, I will link again in the show notes. And let's say some advice for... Actually, no, I'll end with this. In your podcast with your brother, actually, you say, gratitude means awareness, not positivity. So maybe the message on... We'll close out with what does gratitude mean in terms of awareness and versus positivity? Hmm. I think...

In that context, you threw me because I was like, she's going to ask me what my brother would say. So I was like, ready for that question. But yeah, I think in the context of everything that we're talking about, gratitude, as I've described, doesn't mean negating or dismissing or invalidating all of the challenges. think gratitude is what can allow space for both of those things to exist at the same time because they do. We like to pretend that they don't.

You know, it's not toxic positivity. It's not ignoring the challenges. It's making space for the complexity of our lives and of us as human beings, all of those things that massively coexist. That this and that of life. And what would Amanda today say to Amanda after the loss of Adam? you'll get through it. You get through everything and you'll get through this too.

Beautifully stated, Amanda. Thank you so much for being the light that you are and the work that you do and for being you. Thank you. Thank you for having me. That's it for today's episode. Be sure to subscribe to the Grief and Light podcast. I'd also love to connect with you and hear your thoughts and your stories. Feel free to share them with me via my Instagram page at griefandlight. Or you can also visit griefandlight.com for more information and updates.

Thank you so much for being here, for being you, and always remember, you are not alone.