Ep. 220: The Food Allergy Hive - A Supportive Community for Those with Food Allergies

Managing your loved ones or food allergies can leave you overwhelmed, stressed, and anxious. But where does one begin to address the emotional side of food allergies? We are sitting down with Elizabeth Hawkins, PhD, MPH, food allergy parent, psychologist, and founder of the Food Allergy Hive, who is also known as the Food Allergy Psychologist, to explore the emotional side of living with food allergies and about the Food Allergy Hive.

Resources to keep you in the know:

• The Food Allergy Hive
• Food Allergy Hive Membership
• FAACT's Behavioral Health Resource Center

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Transcript

Caroline: Welcome to FAACT's Roundtable, a podcast dedicated to navigating life with food allergies across the lifespan. Presented in a welcoming format with interviews and open discussions, each episode will explore a specific topic, leaving you with the facts to know or use.

Information presented via this podcast is educational and not intended to provide individual medical advice. Please consult with your personal board certified allergist or healthcare providers for advice specific to your situation.

Hi everyone. I'm Caroline Moassessi and I am your host for FAACT's Roundtable podcast. I am a food allergy parent advocate and the founder of the Grateful Foodie Blog. And I am FAACT's Vice President of Community Relations.

Before we start today's podcast, we would like to take a moment to thank Genentech for being a kind sponsor of FAACT's roundtable podcast.

Also, please note that today's guest was not paid by or sponsored by Genentech to participate in this specific podcast.

Managing your loved ones or your own food allergies can leave you feeling overwhelmed, stressed and anxious.

But where does one go to begin to address the emotional side of food allergies? We are sitting down today with Dr. Elizabeth Hawkins, food allergy parent, psychologist and founder of the Food Allergy Hive, who is also known as the Food Allergy psychologist, to explore the emotional side of living with food allergies and how to tackle emotional learning, find support and solutions.

We'll also be discussing the Food Allergy Hive membership as well.

Welcome, Dr. Elizabeth, to Fact's Roundtable podcast. We are not only delighted to host you, but we're thrilled to talk about the emotional side of living with food allergies. It's such an important part of our life and we're just absolutely thrilled to have you here.

Dr. Elizabeth: Thank you for having me. I'm so excited to be here and to have this conversation with you today.

Caroline: Wonderful. Well, we're going to jump right in here. So from a professional perspective, you have a unique position as a psychologist and a parent of a child with food allergies. So can you share your background and why you created the Food Allergy Hive, which we'll be exploring very soon?

Dr. Elizabeth: Absolutely. So I guess if we go back in time, I started as a psychologist. I have a PhD in child and Adolescent Psychology from the University of Washington in Seattle.

And so I was a licensed psychologist and then my two kids came along and my younger daughter had, from the time she was born, had issues and was eventually diagnosed with multiple complex food allergies, plus eczema and asthma.

And she has environmental allergies and cold induced Anaphylaxis and solar urticaria. So there's all these different things, you know, going on that we were teasing out, especially during those early years.

And because of all that, we were spending quite a bit of time in our allergist's office.

And one day we were there for an extended appointment, and both parents were there. But he came in and he asked us, he said, I'm having, you know, I have a family down the hall that's having a really hard time.

Would you come talk to them? So I said, okay. So I went down, I talked to this, to this family, and following that, his office just started referring patients to me.

So, you know, I get a phone call from them saying, could you please work with this family or this child? And so I started seeing food allergy children and adults and parents in my private practice, where I was specializing already in anxiety and parenting.

And so slowly, word got out among local allergists and support groups, and more and more people started coming to me. So I had started without even really intending to do it.

I had started this subspecialty around food allergies, and I was offering individual therapy, and then I started doing groups. So I was doing groups for parents, I was doing groups for kids.

So that was kind of moving along. Okay. And then the pandemic came, and we all went online.

And one of the things that came out of that, that I think is a very positive thing in the field of psychology, is it really sparked more and more states getting involved in this inter jurisdictional compact we have called psypact, which allows, if you're in one of the psypact states, it allows you to practice across state lines.

So what that means on a practical level is almost overnight I was going from just being in the couple of states where I was licensed to being able to practice in 43 different states and territories.

So I started getting so many calls and emails and referrals from across the country and actually across the world. You know, people were reaching out to me from Asia and from Africa, mostly Americans that were living abroad wanting help, and I could not see them all.

So my waitlist was getting longer. I was turning people away, and I was confronting this reality, which is therapy is a really intensive model, and there's a limit to how many people any therapist can see in a week, because it's one on one.

And I was hearing from people this same story that either they had gone to see a more general therapist, and it either didn't help or is even actually hurtful.

And Set them back in terms of dealing with their anxiety or trauma or whatever was happening because that therapist didn't understand the context and the realities of living with allergies and probably even more had not been able to find someone.

So I couldn't keep up with the demand. I was frustrated, increasingly frustrated with our mental health system and how much privilege it takes to access high quality specialty care, how few allergy informed therapists were available.

And I'll mention this just because I think it's relevant. A whole nother branch of my career which is completely separate from this is I work with American Indian and Alaska Native communities to develop and evaluate behavioral health programs and to develop prevention and treatment curricula.

So all these different threads were starting to come together and merge in my head and I had the idea of trying to take the psychoeducation and the skills that I provide to therapy clients and to put them in more of this generalized on demand format, sort of like a prevention program or an early intervention program.

And that's really the why for the Food Allergy Hive. And how it came to be is an effort to demolish, democratize mental health care and make evidence based resources more widely available to anyone, anywhere in the world, at any time of the day or night.

And all at an affordable price point because so many people cannot afford therapy. So my goal was to make this membership, to make a full year of membership in this community, in this program less than the cost of one therapy session with me.

Caroline: It is amazing listeners. We're going to go into detail in just a couple minutes on this, this food allergy high. But I have to tell you, I've poked through it myself and all I could think of is where were you 24 years ago?

But I am happy you are here now. And yeah, that does date and age me as well. But, but thank you for sharing your background. It's really interesting to hear how people get from one spot to the other and how problem solving becomes such an element in our, our lives.

And it's really wonderful. But before we start talking about Food Allergy Hive, let's first discuss the emotional side of food allergies and what emotional learning is is. You use that term emotional learning on the Food Allergy Hive website.

So I just want to make sure we all understand what you're talking about so we have this baseline and then we'll dig into the hive.

Dr. Elizabeth: That's a great question. And at a, at a basic level, emotional learning really means education around developing awareness and skills for regulating emot and managing the tricky situations people with food allergies find themselves in.

And I guess if you think of our current mental health system as a pyramid, the base of the pyramid, the majority of the pyramid are people who are struggling with some kind of emotional concern and they're unable to access services for a variety of reasons.

Those might be availability, provider availability, time, cost, insurance constraints, geography, among other reasons.

And then one level up, you have people who have been able to access some sort of general mental health care. And then the very top, the smallest little amount of the pyramid are those who are able to see an allergy informed therapist, which is highly specialized and in demand.

And we know from both research and anecdotal evidence that there is a very high need for emotional and mental health support in the food allergy community and that the majority are not getting the help that they need.

So all of that's the background for food allergy Hive. It's not therapy, it's not a clinical healthcare service.

And you know, as part of that, I'm not developing a doctor patient relationship with members and I'm not offering individual medical advice. So it's not aiming to be the tip top of that pyramid, but instead it's really focusing on what I'm calling emotional learning and skill building that's really addressing the rest of the pyramid with emotional resources around the experiences of living with food allergies.

And for many, that might be the only support they're able to access or that they need. And for others, it might be a supplement to the work that they're doing with a general therapist or content that they can explore and work on while they're waiting, while they're on a waiting list for an allergy informed therapist.

Or it could still be resources after you finish therapy and you want to just keep some of those new skills and habits and routines going. So that's really what I mean by emotional learning.

You know, it's this education and skill building around emotions and how to regulate them.

Caroline: Wonderful. And thank you so much. I mean, again, we all know how important this is. And so now let's dive deep and explore the food allergy hive. You already talked about how you're, you know, filling this gap, but if you could let people know, like when they go to your website, what are they going to see?

I know you do have a few free guides on there and so that would be kind of fun to discuss and go through those. And then also I did notice too on your website you had a food allergy anxiety action plan.

I'd Never heard of that. I thought that's pretty amazing. So if you don't mind, you know, touching on that and then just kind of lastly, as you talk about the Hive, you know, you mentioned how you use science based research and information.

How does that play into the work and what should people be looking for? But please, let's dive right into the Food Allergy Hive and what you do. This is just absolutely fascinating and to me very groundbreaking and very different.

Dr. Elizabeth: Thanks for saying that. There's a number of different questions you had in there, so hopefully I'll touch upon them. If I don't, you can redirect me.

So, as we've already said, Food Allergy Hive, it's a membership community and so when you join, you get access to all the existing content, plus any new content as it's developed, plus access to our live events and a community space.

And you know, when someone logs into their account, so they go there, they're going to see the Hive library and it's set up so that every resource that is there, it's tagged with keywords.

So you can search by type of content, whether it's video workshop tips, scripts, articles, things like that. And then we also have it organized by topic, like anxiety or parenting or communication, or you can search by keyword.

So we have these workshops which are usually about an hour, sometimes they're a little bit longer.

And some of the workshops are things like managing food allergy anxiety or coaching your child to manage anxiety, or navigating food allergy independence as our kids and young adults are moving into the world and learning how to do some of these things on their own.

I have those workshops and then there is a bunch of video clips and those are usually more like three to six minutes. They're short and they are very action based and they're focused on one specific topic or skill or question.

And then we have downloadable tip sheets like how to emotionally prepare for an oral food challenge, or how to manage the emotional impacts of anaphylaxis. And we have scripts which you had mentioned to me, I think earlier, before we started recording, you know, which are really word tracks for different situations, like how do you communicate your food allergy boundaries in different situations?

Or a restaurant script, or what are things you might say to an anxious child or how to validate yourself or your child. So all of those things are on demand and they're in the library.

And then we also have live events like drop in support sessions and Q and A sessions.

We had a Hive book club event last month. With a really dynamic panel discussion and we're planning another one in early 2025.

And then last we have a community space where members can connect with each other to ask questions, share tips, offer support or encouragement. So that's really what the experience of the hive is like.

And I think you asked, so you asked about the food allergy or. Yeah, food allergy anxiety action plan. I always mess this up.

The reason I developed that and I actually had developed that as part of a group I was doing with food allergic kids who were managing their anxiety, food allergy anxiety.

And I thought we all in the physiology community, we all have experience with those emergency care plans where it describes what is anaphylaxis and these are the signs and here's what you do.

And so I thought, huh, I wonder if I could just make something similar. Which is an anxiety action plan where, you know, it's mapped onto a three step process. I take people through in that managing Food Allergy anxiety workshop I call the three R's of Anxiety Management.

You have to recognize anxiety, you have to be able to allow it to be there and really reflect on what, why it's there, what's its job, what is it trying to tell you and then we can make choices on how to resp.

So the three R's recognize, reflect and respond. And so the anxiety action plan has those three R's so it helps people understand what does anxiety look like and then has some questions to help that second step of reflecting.

And then the third, responding is a place for people to fill in certain skills. And we have a ton of skills in the hive library that help them in terms of them self soothing and coping with anxiety.

So it's just a thing you can have in paper form. It's one sheet, you can take a picture of it and have it on your camera, but it's there to help you when you're in that situation, when you or your child is really anxious and you need something right then and there.

Oh, you asked the why. So why is science based research and education so important?

And the why is really just the food allergy community deserves a safe and trustworthy source of information and resources on how to navigate the emotional side of food allergies. And I'm in this unique position as you pointed out at the beginning, where I am a licensed psychologist.

I have this background in child adolescent psychology. I'm a food allergy parent of someone who has a lot of, you know, like more than 20, 25 different allergies that we've navigated and we've gone through a lot of different treatments over the years.

And I've been working with food allergy families for almost 15 years. So I feel like, you know, I kind of get it and I have the experience and the clinical expertise to be able to translate from the science based psychological literature and adapt those concepts for food allergy families to be able to use.

Caroline: Thank you for that. Really great explanation because there's a lot in there and so I think it's so important that our listeners understand.

And so on that note though, what is the kind of person like, what type of person would find the food allergy hive important? Is there an age limit? Are there any specific criteria?

But what kind of person should come check you out?

Dr. Elizabeth: Well, it's designed to be helpful for anyone who is living with food allergies, whether that's their own or they're a parent or a caregiver, family member, friend of someone with allergies.

You do have to be 18 years or older to join. And we have content for adults with food allergies and also content for parents and caregivers who are both parents and caregivers of younger children and also for teens.

And I do have some worksheets and some content in there for directly for kids that parents can use. They can download and then print things off to help their child if they're struggling.

But you do have to be 18 or older to join. You know, for now, we're directing, you know, the content is all directly related to the person, so either the adult or the parent who's managing food allergies.

My goal as we grow and expand, I really would love to work with allergists and explore ways to integrate this platform and our content into their practices to support their patients and their staff in managing the emotional issues that arise because they really are on the front lines of seeing and dealing with many of the challenges that come up around diagnosis of allergies, oral food challenges, trauma following allergic reactions, things that come up around treatment.

They're having to manage that on the fly in the office on any given day. And so I would love to be able to also see these resources get integrated into to allergy practices so patients can have a little bit more of a holistic and integrated approach to their medical care and their emotional mental health care.

Caroline: That would be an excellent resource.

Now, looping back around to the website and this platform and program, I keep calling it Program. What are your favorite elements of it? I mean, I'm hoping you have maybe one or Two things that you just love, you know, like I like to bake and there's so certain elements.

And baking, I love, I love the decorating part and then the eating. So what would be your maybe most favorite parts or elements in the hive that you think are just so critical?

Dr. Elizabeth: Oh, that's such a hard one to answer. I, I think the, the ones that immediately come to mind.

I think I do like the workshop we have on managing food allergy anxiety, because I think that's a foundation and I think it sets the stage for a lot of the other things that are in there.

So I have to mention that, and that really is, it's really targeting adults. So whether you're an adult with your own allergies and managing anxiety, or whether you're a parent managing your anxiety.

But if you're asking kind of what my passion or what I really love, I think there's two others. So there's a workshop on coaching your child to manage anxiety. And I love parenting.

It's one of my favorite things to do is to help parents understand their children and what their children are going through and help them both learn to take care of themselves and regulate their own emotions so they can show up and then be able to help their child learn how to do that.

So I love the parenting based resources we have. And then the other one which might not seem like it fits directly is we have a workshop that, on what I call the foundations of emotional health.

And we get into the things that I talk about with all my clients, you know, around sleep and healthy diet and the gut microbiome and movement and social connections. All these things are really the pillars of good emotional health for anybody.

And I think, you know, addressing that. We, we know that food allergies can affect our mental and emotional health, but our mental and emotional health also affects our food allergies.

And both of those are impacted by these things like sleep and diet and exercise and how connected we feel to other people. And so I feel like it's a really important part of this work that I'm trying to do, which is trying to prevent the more serious mental health issues from arising in the first place, you know, by helping people learn how to better take care of themselves.

Caroline: That was a hard question. That was basically saying, which is your favorite child?

Dr. Elizabeth: Right. It's hard to pick just one baby.

Caroline: Exactly. But you did a great job because I think you really gave us a really fascinating glimpse into some of the elements and then what they do. So thank you.

So now tell me, do you Think. Is it safe to say that maybe over the last few decades, as the medical community has worked feverishly to learn more about food allergies, you know, and the importance of emotional health care, do you think those areas of emotional health care actually could have been a little neglected?

You know, we've been so focused on getting diagnosis and treatment and so forth. And just. And on that same note, how do you think listeners can gauge if their child or themselves would benefit from support in this area?

Like, how would a listener say, hmm, maybe I should check out this program. Maybe I should check out, you know, seeing a therapist or a different type of mental health care professional.

But I was just wondering your thoughts on, again, has this area been, like, underserved? And then how do we know when we need to get help? Mm.

Dr. Elizabeth: Mm. Great questions.

In general, I think it's safe to say, it's fairly safe to say that the medical community often leaves out mental and emotional health and overlooks the mind body connection, which we were just kind of talking about with that workshop, in terms of how these things impact each other.

My bias is that almost everyone, anyone and everyone living with food allergies could benefit from some kind of support.

It's a challenging diagnosis and a challenging life, and no one is handing out a guidebook on how to handle either your specific issues or your child's.

And so it's challenging, it's hard. And I think a lot of us just don't know what to do. We find ourselves in these situations and there's a lot of confusion and doubt and uncertainty.

And in general, as a society, we don't really teach emotional awareness and regulation skills. We're not taught how to handle hard things and to do it in ways that align with our values and our identity.

So I have the belief that good skills are just good skills. And the kinds of things we talk about in the food allergy hive are transferable to a wide variety of challenges in life.

So you might learn them specifically related to food allergies, but then those things can be transferred and generalized to so many other situations. So, you know, once again, unfortunately, I think we have this mental health care system and more general healthcare system where you only access expert care once you already have a problem, not proactively to prevent one from happening in the first place.

And there is no preventative care and mental health like there is in other areas of medicine. It does not exist.

So you have to have a problem to even be able to qualify, to have insurance pay for something, there has to be a diagnosis There has to be a treatment plan.

And even once there is an issue that would meet that criteria, so many people are not able to access care for all the reasons we talked about earlier.

So with that in mind and that kind of perspective, I think most anyone would benefit from some help managing, learning how to manage their emotions and navigate tricky situations that tend to go along with food allergies.

Then we have the smaller subset of people who could use more targeted clinical interventions like therapy.

And some of the signs that that might be indicated are when the issue is impacting a person's functioning in one or more areas, or it's keeping them from living a full and meaningful life, or they're living their life but with so much distress and suffering that they're not able to enjoy it.

Which, you know, I often call white knuckling. You're, you know, you're doing it, but you're just white knuckling through it, and you're not enjoying it. You're not really there and present.

And so, you know, some of that might be signs that a higher level of care like therapy is indicated. But again, you know, going back to that pyramid, you know, that's the top.

Most people probably, you know, could just benefit from some more general information and education and support.

Caroline: Thank you very much for that explanation, and I'm just so glad you said the word prevention.

Before each of my children went off to college, I actually had them work for the therapist for a little bit just to get coping skills, just to understand how to manage stress and so forth.

And of course, it never dawned on me to do that with food allergies until just right now, when you're talking about prevention. But I think that's so key, right? We wait until there's a problem.

And even when I asked, you know, my children to go to therapy, they were like, why? Everything's fine, right?

Dr. Elizabeth: And that's the. That's the view we have. And unfortunately, mental health care is still very stigmatized in a lot of this country and other countries around the world. And so there is like a what's wrong?

You know, if you, if you're seeking that kind of care, there must be something wrong with you. Not just, I'm struggling with this thing because I'm human, but there's something wrong with me.

And it's more shameful and embarrassing here.

Caroline: We're just trying to stay ahead of the game. And especially with food allergies, we know it's going to be stressful, and we know there are those milestones, right? When you hit high school and you start handling things yourself or like my children, they're in college.

My son's about to enter the workforce. That's another transition. And so I can see how this is so important, not just when they're little, but all the way through as adults.

Maybe you have a new diagnosis as an adult, or even as an adult with food allergies, you start having children, and that's a whole new layer of stress in your life.

Dr. Elizabeth: Yeah, absolutely. And I think that's, you know, that's the demographic shift I'm seeing in my private practice is, you know, that. That wave of food allergies that really, you know, started in the late 90s and into the early 2000s.

Those kids, your kids in my kids, they're growing up and they're becoming adults, and they are managing these things on their own. They're getting married, they're having their own kids.

And, you know, so I. It's a whole new. It's a whole new bunch of issues that I hearing from people very different from five years or 10 years ago, where mostly the only people who are reaching out to me were food allergy parents.

And now I'm hearing from food allergy adults, and they're struggling with, you know, things like, I have these allergies, and I know it's so important to introduce them to my baby so they, you know, develop that protection, but I'm terrified to do that.

And what if they have allergies and how do I protect myself from those foods while I'm introducing them to my baby? You know, things like that, which are, you know, new and I think really important to talk about and address.

Caroline: Absolutely agree with that. You're right. That is such an issue. How do you keep yourself safe but feed this little person the. That smears everything that they have? And you're right, there are some challenges there.

Boy, it's a whole new day, isn't it? It is.

Dr. Elizabeth: And that's exciting. And, you know, I. I don't know if I mentioned this earlier, but one of my goals with Food Allergy Hive is, you know, there's. There's a lot that's already in there, but I want it to keep growing and it to be a really dynamic, helpful community for people.

And so as people have questions or concerns or issues, developing new resources for them, whether that's these videos or tip sheets or scripts, but, you know, as people bring these.

These real world issues that they're living to the hive to be able to then take my knowledge and my expertise as a psychologist to be able to then again do that translation and bring the skills and the education for how to do those things.

Caroline: Thank you for adding it. That was really good. Well, unfortunately, and I do say unfortunately, we are at the end of our time together, because I could just keep going. This is such an amazing topic.

So before we wrap up today, is there anything you want to say to listeners that maybe we missed or any parting words of wisdom?

Dr. Elizabeth: I think I would emphasize or reemphasize something that we already talked about, which is to find support and resources before you need them and to get familiar with what's available. Because we all know that difficult moments or crises rarely come at a convenient time.

And so far too often people are struggling and they try to find help only to run up against all those barriers that we've talked about in terms of therapy. I hear from clients all the time that they have reached out to 20, 30, 40 different therapists, and first of all, they're not even getting any response from the vast majority of those.

And then when they do hear back from someone, they're usually full or they don't take their insurance or they're not going to work out. And so that person who's struggling is left with nothing.

And they're either, you know, on a waiting list for a very long time, or they're just kind of back to where they were dealing with this issue and dealing with these emotions.

So I think if you already have some of those tools and the resources in your toolbox, then you have something to go to when you have that moment of need.

We practice administering epinephrine before we need it so that we can handle an emergency situation more calmly and capably. And I think the same principle applies for emotional situations. We don't often think of it that way, but we can equip ourselves with helpful knowledge and skills and have those ready to go for when we need them.

And on a related last note, I would just, I think, ask or suggest that we all shift our mindset away from the more traditional medical model of waiting for a problem or a diagnosis to exist and to think more flexibly about how we can nurture our emotional and our mental health and proactively build habits and routines to help support it.

Like you mentioned, you know, proactively building coping skills for things in our life, you know, as we're able to go upstream to create that emotional learning and the connection and community that empowers adults living with food allergies and parents and caregivers raising a child with feed allergies to be more confident and resilient in managing the emotional side of this condition.

Caroline: Just amazing, amazing, amazing words of wisdom. Thank you so much for spending the time with us today and giving us this great information.

Thank you again for your time. I know you're super busy and we just really appreciate you being here.

Dr. Elizabeth: Thank you Caroline. This has been delightful and I can't wait to meet you in person.

Caroline: Thank you.

Before we say goodbye today, I just want to take one more moment to say thank you to Genentech for their kind sponsorship of FAACT's Roundtable podcast. Also, I want to note that today's guest was not paid by or sponsored by Genentech to participate in this specific podcast.

Thank you for listening to FAACT'sroundtable podcast. Stay tuned for future episodes coming soon. Please subscribe, leave a review and listen to our podcast on Pandora, Apple Podcasts, Spotify, Podbay, iHeartRadio and Stitcher.

Have a great day and always be kind to one another.