Ep. 249: Experiencing Food Allergy through Different Lenses

FAACT’s Vice President of Inclusion Initiatives, Aleasa Word, recently wrote a powerful piece reminding us that no two people experience food allergies the same way. We’re honored to have Aleasa with us to explore a fresh perspective—one that not only captures the lived experience of food allergies, but also sparks greater empathy, awareness, and understanding in the communities around us.

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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 FAACTS 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 the FAACT Roundtable podcast.

I am a food allergy parent and advocate and the founder of the Grateful Foodie Blog. And I am FAACTS Vice President of Community Relations.

Before we start today's podcast, I just want to say thank you to ARS Pharma for their kind sponsorship of FAACT's Roundtable podcast.

FAACT's Vice President of Inclusion Initiatives, Aleasa Word, recently wrote a powerful piece reminding us that no two people experience food allergies in the same way. Today we're honored to have Aleasa with us to explore a fresh perspective,

one that that not only captures the lived experiences of food allergies, but also sparks greater empathy, awareness and understanding in the communities around us.

Welcome back Aleasa to FAACT's Roundtable Podcast. You are definitely a favorite and today's topic is outstanding and I can't wait to dive right in. So welcome.

Aleasa: Well, thanks Caroline. It's always great to be back on and to chat with folks about a lot of the things that we probably could stand to think about to make the world a better place.

Caroline: I think after our discussion today, we're all going to walk away better. For our listeners who may be meeting you for the first time, can you share a bit about both your professional journey and then your personal connection to food allergies and then how the two have shaped your perspective?

Aleasa: Oh, absolutely.

So I have many different hats that I wear, but they all fall under the umbrella of emotional intelligence and inclusivity and working with people to understand the need for both of those things.

Right. If we have emotional intelligence, we're aware, we're aware of other people, but we also have the opportunity to be able to embrace that everyone's just simply not the same.

So I do some work in that space working with fac, making sure that we're helping people in our community to be able to feel like they're seen and they're heard and they're valued.

So I do that and do some other coaching and things along that nature.

And the reason why that is so relevant to my own personal journey is I remember years ago starting out trying to teach food allergy safety to childcare providers in my home state of Delaware.

I live in Atlanta now.

And I remember thinking as I was dealing with families that they needed so much more. And with that I started getting into more of like the kind of coaching space and understanding that sometimes even with this diagnosis, there's a sense or feeling of loss and, or trauma with that.

And so in that,

finding better ways to be able to be more of a resource for communities based on our own family story and providing a solution that at the time just simply wasn't there.

So another part to that is thinking about how that aligned with making sure that I was getting the information and the knowledge that I needed. Because I have a daughter who at the time had multiple food allergies.

And at that time, to be very transparent, there weren't a lot of people that look like me who were speaking about this in communities openly.

And there were certain things, nuances that we all have in our own communities that might be different than other communities and equally different. Right. But not that different. Equally different.

And I needed to be able to find out what I needed to know to be able to make sure that my daughter was safe and to make sure that people understood the severity of life threatening food allergies, but also being able to notice how we weren't even being included in food spaces in the grocery store.

And so my journey and my work with that with my daughter started before the Food Allergy Labeling and Consumer Protection act was actually even put on the books as something that we see now when people have the benefit of working with old timers like myself and others and you and everybody who helped to be really instrumental in pushing that to say we need labels to tell us what's in the food.

And so I can honestly say that my daughter, along with so many of our children and even ourselves from then, were great catalysts to where we are today as far as the forward movement that we have.

Caroline: Well, I'm personally grateful that you're in this community. I've known you for years and just appreciate your wisdom and your knowledge and how you take your talents and your skills and then your food allergy experience.

And you just are so passionate and so dedicated to moving all of us forward. So I appreciate all of this.

Aleasa: Absolutely.

Caroline: So now diving into our topic,

you recently wrote a powerful piece about the many ways people experience food allergies.

What inspired this perspective?

And then tell us about how do you hope it shifts the way we think about living with food allergies?

Aleasa: Oh, absolutely. So what really inspired. It is what we're living right now,

the society we're in, the country we're in, the world we are in.

There's so much polarization amongst people and so much division.

Some of it, you know, without getting too much in the weeds. Some of it's political, some of it's just economic. There are a lot of different things, but at the end of the day,

we all have the same needs,

the same desires, the same wants. We want to be heard, we want to be seen, we want to be healthy. We. We want to be, you know, financially viable.

And those things are getting really mixed up in a way that it's continuing to provide division. And people are just ready to pounce on people about every single little thing.

And I think the lack of respect for the differences that we have,

not only the differences when it comes to the food allergies themselves, but the lens to which we see them,

the way that we see them, the way that we experience them. It's about our own personal worldviews. It's about our own systems of things that are available to us in our communities and in our cultures.

And that goes beyond race and ethnicity and gender and orientation, all of those things. That is just simply what human nature is. No two people have the same size brain, right?

The brain is different. So guess what? We're going to see things differently. We're going to have things at a different level of understanding. So this piece was really to try to continue to push the cohesiveness that this community has always had to say that,

yes, we may have a milk allergy in this house, and you may have a milk allergy in your house, but the lens through which we look at that might be differently.

And it doesn't mean that the lens is wrong because we're both wearing glasses,

and in some families, they may have multiple allergies. And the way that they manage that might be different than the way that you or I manage it. But when we're getting to the point that people are having arguments,

we're losing the focus of what is important. And what is important,

ultimately, is the safety and the lives of everyone who is impacted by this and our ability to purge forward and find solutions that are going to make our lives safer and to help us to be able to be more included in every part of the world.

All right, so when you think about what I'm saying, when I mean the lens, right? Let's think about a person who has a milk allergy, for instance.

When a person who has a milk Allergy sees something like pizza. There's a different lens, there's a different conversation, there's a different set of questions that that person has to ask versus someone else.

Now, if this person, you know, is there a dairy alternative? Is this gluten free? Do I also have a complex, you know, allergy with a gluten sensitivity or celiac disease or whatever that is?

So their lens to which they see that slice of pizza is so vastly different than someone else who does not experience any of those other things.

Cross contamination is going to be an issue. And some people might think, well, then just don't eat it, or, this person's being over the top or, why can't you eat this or you can't eat that?

It's because there is a different lens that each person has to have in order for them to be able to have the right vision for their safety.

Caroline: Thank you so much for sharing that perspective. It's so eye opening and the lenses is such a great metaphor that we can all relate to. I really appreciate that information.

So now on the topic of the lens. So many of us see our food allergies through our own lenses, like you were saying.

But now how can people begin to shift that perspective to better understand the experience of others? Like, what steps truly could help spark that change?

Aleasa: You know, it's interesting. So I wrote a book a few years ago,

and in my book, it's like 30 days of affirmations and like, good thoughts and stuff like that.

And one of the things that I say in the book for one of those days is to just be.

And what I mean by being able to just be is to just be in that moment and accept that things sometimes just are.

Even when you don't understand the differences with someone else's lens of perspective in this food allergy space, again, it doesn't mean that their lens is wrong. It just means that it is different.

Take a look at yourself and say, when I look at my siblings or my parents or my community,

what's different about me?

Is my hair a different color?

Do my eyebrows grow differently?

Are my lashes thicker or thinner than the next person? Am I shorter? Am I taller?

Does my body metabolize food differently?

We tend to accept those things and embrace those things because we say, well, they're outside of our scope of control.

Well, no one has asked for food allergies. That's also outside of our scope of control.

So it is about learning to just be and to know that 2 things, 3 things, 4 things, 20 things can be True at the same time.

And that doesn't mean that it's wrong.

That means that we just have simply different experiences. And that is okay. So it's all about acceptance.

And we don't have to fight,

we don't have to always be right. Because in this case, no one's wrong.

The right is keeping us safe. But we have this linear thinking where it's right or it's wrong, it's up or it's down, it's pass or it's failing. That's not where we are.

And when we get out of that pass, fail mindset,

that up, down, left, right, 15 mindset,

that's when we start to see there's room for all the numbers,

there's room for all the grades on the test,

and there's room for everyone who has a different lens of managing their food allergies.

Caroline: You are just so powerful. That is the only word I can think of as you're speaking right now.

This is just so profound. And you're right, there is no right or wrong. And I think as humans, we just try to go there.

Yeah, we just want everything very simple. And there's just one simple answer. And it's a yes or a no or I'm right or you're wrong, but you're right, we're not.

Being safe is at the heart and center of everything.

Aleasa: And the other part to add to that, even when you see, for instance, in some of the groups that we're in online and things like that, and maybe you see a parent that is handling a situation that that may not have been the most safe at that moment or the best at that moment.

This parent is doing the best that they can with the knowledge and or ability they have.

Attacking them is not the answer.

Helping to support them, see them, validate them, and enlighten them in a caring and compassionate and empathetic way, that's the answer. Because that's when you learn to just be,

be kind,

be understanding, be curious, be empathetic and realize we're all in the same thing, hoping for a cure one day.

Caroline: That is absolutely true. Sanaa, what do you hope people listening in today will take away from this conversation?

Aleasa: I hope that people will begin to allow themselves to give themselves permission to not always have to be on the winning side of a fight,

that they realize that everybody wants to be on the same winning side of the fight.

And the fight is not against one another.

The fight is against the impact of life threatening food allergies on ourselves,

on our families. On our communities, on our healthcare systems,

Fight the right thing and stop fighting people.

Because that's not the answer.

Thinking might be different. You might fight a thought process,

but fighting the people is not going to help us to get to where we need to be. And time is of the essence when it comes to us dealing with this.

I don't have time to fight with somebody who's putting something on, you know, some group online,

you know, and they're asking, well, what should I do? And people are more focused on why are you posting this? As opposed to saying,

hey, let's get you some help really quickly. Let's get you, you know, get to a doctor, do what you need to do with your board certified allergist, stop fighting people and fight the problem,

which is that we don't have a cure and we don't have a lot of the treatments that we are actively trying to get, but we're working towards.

Caroline: Again, beautiful words of wisdom. Before we say goodbye today, is there anything else you want our listeners to hear from you?

Aleasa: I will say that the one thing that people can do is if you find that you're that person who was on the other side of the fight,

give yourself some grace and just be different today,

right now, in this moment,

give yourself permission and flexibility to change your thinking.

And I say this often,

if you're thinking about countries that get into conflict,

as they get new intel,

they change the strategy for which they give to their troops.

So we are the troops. And the more information you get,

don't be afraid to change your strategy because that's going to continue to help us to be cohesive and help us to continue in the good fight.

Caroline: Aleasa, again,

another phenomenal discussion with you.

Thank you so much for your time. We appreciate your work, your intelligence, your wisdom, your kindness. So thank you so much for being here with us today.

Aleasa: Thank you so much. It's my pleasure. As always.

Caroline: Before we say goodbye today, I just want to say thank you one more time to ARS Pharma for their kind sponsorship of FAACT's Roundtable podcast.

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