When Safety Creates Distance: Isolation, Connection, and Boundaries in Food Allergy Life

Transcript Disclaimer:
This transcript was generated using AI software from the original podcast audio and may contain errors, omissions, or minor inaccuracies. It has been lightly edited for readability. Please refer to the full podcast episode for the most accurate representation of the conversation.

Amanda Whitehouse, PhD: 0:00

Isolation doesn't usually begin as a choice. We experience separation from the group and then begin to use it as a strategy ourselves. A missed invitation because it felt too complicated to explain. A relationship that slowly quieted because you were tired of being misunderstood. A moment when you realized you just didn't have the energy to advocate, and so it was easier to stay home. For many families and individuals managing food allergies, isolation, often disguises itself as safety, as protection. And in the short term, that can sometimes work, but over time the shrinking of our world can come at a real cost. Right now there's a lot of cultural messaging that encourages cutting people off, cancel culture, letting relationships go, the let them theory. That framing might feel empowering in moments that are painful or frustrating. It's not healthy for anyone if it's the go-to strategy and doesn't balance other factors with that cutting off energy. In particular, it doesn't reflect the lived reality of people with chronic illness, food allergies, celiac, or anything that's affecting us on a daily basis, and that's not usually very well understood by others. If we truly let everyone misunderstand us, ignore us, opt out of learning what we need, many of us would be left with no one at all.

So in today's episode, I'm talking about isolation and social connection in the context of food allergies and celiac. Not from a place of judgment, but from a place of deep understanding. Please remember that I have lived this myself. We will explore why isolation feels safer, why it often isn't, particularly in the long run, and why most relationships don't belong at the extremes of full access or no contact. We'll talk about the gray space in between and how to establish that so that boundaries, influence, and connection can all coexist so that safety doesn't require disappearance. And where staying connected doesn't mean tolerating harm.

Welcome to the Don't Feed the Fear podcast, where we dive into the complex world of food allergy anxiety. I'm your host, Dr. Amanda Whitehouse, food allergy anxiety psychologist and food allergy mom. Whether you're dealing with allergies yourself or supporting someone who is, join us for an empathetic and informative journey toward food allergy calm and confidence.

Amanda Whitehouse, PhD: 2:25

I want to acknowledge that this conversation will probably feel uncomfortable. And if it feels uncomfortable, it's probably because you see yourself in it. I want you to know that if it does, you're not alone. I have been there myself and worked through this. It is not coming from a place of judgment. You are not wrong for feeling that way, and I genuinely am just here to help you consider it with this conversation. Most of all, I want you to know that I'm not placing the blame on you. We are excluded constantly, repeatedly, intentionally, and unintentionally, systemically, socially, emotionally. That part is real, and there's also something else happening alongside that reality. If we don't talk about it honestly, we risk shrinking our lives in ways that only hurt us. So this is another one of those, “What would I tell you if I wasn't afraid to hurt your feelings?” conversations that I don't do on social media, because it's literally my job to say hard things in ways that don't hurt you, but actually help you to better hear them. I hope I can accomplish that. Let's take a deep breath together and walk through this with a lot of compassion.

To start, let's get back to the pattern of how this often gets established that I see all the time. We are so used to being excluded, that we start to expect it. We are burned out from advocating, we're tired of educating and we don't want to fight anymore, all of which makes complete sense. Sometimes it is in our best interests to decide not to go, not to ask questions or to explain or engage with certain things that we know could be unsafe for us or that we just don't have the resources for. At that point, that is a choice and is sometimes a very wise one. The problem here comes when we call that choice "exclusion." We are excluded and there are times when we make a choice to remove ourselves from a situation. When we call our own choices "exclusion," we unintentionally take away our own agency. It registers really differently if you think and say to yourself, "They excluded me," versus, "I'm choosing to sit this one out" because either it's been a long week or that place doesn't work great for me. One of those leaves you feeling powerless. The other one acknowledges that you still have a choice even inside very real limitations. It's okay to opt out to rest and to say no, but when it is your choice, calling it "exclusion" reinforces the narrative that you have no control, which erodes your sense of safety over time.

More specifically what we can call those choices is boundaries. And I want to remind you that boundaries aren't walls that we put up to keep people out. They're doors. They are the way that we show people how it can be safely let in, safe for them and for us, in a way that allows us to be connected with them without you being completely exposed or unprotected. Right now we're living in a culture where boundaries have been oversimplified and hyperbolized. So we see words everywhere we look, especially on social media, like toxic gaslighting, narcissistic, cut them off, let them, no contact. They have no nuance, there's no context, and certainly no clinical meaning. Cancel culture and pop psychology have deeply impacted our ability to tolerate discomfort in our relationships. We're losing the skills that we need to build and maintain long-term connections. Without those long-term connections, we feel less and less safe. Not because the world is more dangerous than it was before, but because biologically disconnection increases nervous system threat.

We are wired for connection as humans because we need it to survive, so our nervous systems equate connection with safety. Think about the difference between animals that are hatched and begin life independently, and humans who are born. We require proximity to our caregivers to literally survive. And even once we have grown up and we are independent, that doesn't leave our systems.

I do want to acknowledge that many people, for a variety of reasons, don't desire or need less connection than some other people. And they may experience it differently. This is not a judgment of that, and I don't want to over generalize. But generally speaking, avoiding connection brings relief in the short term, and then in the long term, it increases our anxiety. It erodes our social skills, amplifies our fear of engagement, and reinforces the hypervigilance.

In food allergy life, this is extra complicated because social interactions require constant monitoring. We have to pay close attention to the people, the food, the environments, the cues, and so social interactions can tax us in a way that isn't the case for other people. We need more time leading up to something and invest more emotional energy preparing. And then of course, afterward we need more time to recover. But when that recovery turns into avoidance, the nervous system doesn't relearn the safety.

Unfortunately, what it has learned is that sometimes it hurts to try to engage and be included and involved. We are often dismissed, minimized, and ignored, and it can feel safer to push people away and not give them the opportunity to do it to us. We've been there before. A lot of times we know what's coming and that instinct is real. That makes sense. But it also means that your new relationships or new interactions start being filtered through old wounds. Some of that's protective, but it is one skill that should be balanced with others in order to navigate and heal those wounds.

Not everyone is unsafe. Not every person you come across will be careless or won't understand if you make an effort to explain. When they are, it isn't about you, but it does still hurt. Their response reflects their values, priorities, and their capacity. I'm not saying this to excuse the harm, but if we remind ourselves of that, it can soften the internal story that we are invisible or unworthy. If avoiding is your go-to way to feel safe, and if it feels really uncomfortable for you to set a boundary in a relationship or a situation, it might not be because it's unsafe right now. It's very possible that it's because it was unsafe or at least very uncomfortable in the past. So exploring that can mean asking ourselves questions like, am I afraid that they'll be mad? What's it been like in the past when people were mad at me? Am I avoiding conflict? Where have the sources of conflict been in my life and what was I shown or taught to do about that? Am I afraid of being rejected? Who have I felt rejected by and how did I respond in that situation? It might not have to do with food allergies.

Many people who aren't living with chronic illnesses have those same fears and those same wounds. And for all of us repairing that means learning to tolerate someone's irritation with you. And if someone would be mad or reject you or cut you out for setting a reasonable boundary that is needed for your safety, or your full enjoyment and participation, then setting the boundary gives them the opportunity to make that choice rather than you always making that choice in advance and living in self abandonment to avoid it. If that happens and we feel angry or resentful, that's also information that's valuable for us to explore and to use. When we feel angry and resentful, it usually means that our boundary has been crossed or maybe that it wasn't clearly expressed, and we assumed that someone understood what we wanted or needed. An uncommunicated expectation is a premeditated resentment. If you want good relationships, you have to practice repair. And your nervous system doesn't need perfection, it needs you to practice repair too, so that it can learn to trust that that is possible and you won't feel so afraid or anxious or worried about upsetting someone or irritating them or making them mad at you because you learn to trust that when relationships are important to you, and the people that you care about deeply also care about you, we can learn to work through it even though it's uncomfortable.

Our children are learning this too by watching what we do, so it benefits them to see us modeling real apologies, making repair after mistakes and taking accountability. It's important for us to do it in our relationships with them. Admitting mistakes as parents is complicated, but so important. That becomes the blueprint or the expectation that they carry forward. This is also relevant in our relationships with our doctors and our healthcare teams. Appointments are stressful. If they're time consuming, they're emotionally draining. But it's important to keep up these regular relationships because our doctors can track changes, share new tools, tell us about new treatments that might become available during this really exciting time in food allergy. They can support transitions and anticipate things that we might not know are coming and help to navigate things we don't think to address If it helps, think of the medical system as separate from the individual clinicians whenever you can.

I hope that you have a good relationship with your doctors, and I've had the privilege over the last couple of years since I started the podcast to meet more and more providers who are out there caring for clients, doing research, writing articles, trying to spread the word about things because they really do deeply care. One of the things that they say to me over and over again is that they really need us to tell them as patients, what is not going right in our care. And I can attest to that as a psychologist too. In my therapy sessions with clients, I'll often invite them to check in. It's absolutely appropriate for them to tell me when something didn't sit right, if anything bothers them, something that doesn't work about the way we are completing our sessions. And that can be really healing to be welcomed to express discomfort. It's still uncomfortable if and when it happens, but it helps me to provide better care to you. And I know that that's the case with our doctors too. So rather than avoid because something doesn't go right or just switch practices again, having difficult repair conversations with your providers is another layer of connecting instead of isolating.

It's important to know that this isn't just about our current state of mind or wellbeing. There is a Harvard study that followed hundreds of people for 85 years. The number one predictor of health and longevity was not diet, money, exercise, or genetics. It was the quality of relationships. And certainly for relationships to be quality, they're not going to be easy. It means meaningful repaired, invested relationships. Which is quite literally the opposite of what I was mentioning before and this trend societally to just write people off, cut them off, go no contact.

A lot of that has been spurred by the popular book, The Let Them Theory. I'm not claiming that I'm the first one to say this, but I've been saying it since I first read the book last January. Many other mental health professionals are feeling the same way and expressing their criticism of how this idea is being used because it can justify avoidance instead of resolution. Essentially the Let Them theory proposes a mindset shift that's focusing on releasing the need to control others' actions or words or choices. So by embracing those words, "let them," individuals reduce their stress or stop wasting their energy on uncontrollable situations are relationships that might not be healthy for them.

But there are well-documented concerns raised about the origins of the message. Similar language and concepts appeared earlier than this book in the work of a poet and proper credit and acknowledgement have not been clearly or publicly given. Alongside that, the person who wrote this book is not a mental health professional, yet the message is often received and applied as if it were psychological guidance.

Context matters, especially when people are taking these ideas and really using them to guide how they navigate their relationships or boundaries or losses. Let them is not a healthy or realistic approach for most people, particularly people who have food allergies, celiac, chronic illnesses, or anything else, that means that their safety depends on other people. If you live with food allergies, you already know it. You can't simply let them ignore the allergy. You could either get very sick or not eat. You can't let them decide that the accommodations that you need are inconvenient. You can't let them be misinformed about epinephrine and then walk away unaffected. As many points of contact where this happens, we would have nobody left. We would be removing ourself from every space and every relationship where we want and need to be to have healthy full lives.

Food allergy boundaries are relational by necessity. They require participation from other people. This is where this framework is harmful to our community. If we followed this to its logical conclusion, we would have no one left, no family, no school relationships, no social world. It would affect our professions, our health, absolutely everything about our lives. And the truth is, many people in this community already feel dangerously close to that. It's one of the things I hear most frequently with the people that I work with and telling them to just cut everybody out who doesn't get it or who made a mistake or who hasn't made an effort to listen, would leave them completely alone and would be so unethical of me and so harmful.

Isolation is not a theoretical risk for our community. It's already happening. What people with food allergies and celiac need is not permission to disengage from everyone who doesn't get it. We need support in discerning when to educate, when to advocate, how and when to hold and set boundaries and what the most helpful and supportive boundaries would be, and when to grieve what can't be fixed. Let them or cancel culture or go in no contact places the burden entirely on the individual to just detach and to keep detaching from every spot in life where things are not ideal. Rather than acknowledging and calling out the systemic failures, the misinformation, the lack of education, and the emotional toll and labor that we're already carrying. It compounds our loneliness. It doesn't heal it.

Healthy boundaries are not about emotional numbing or relational withdrawal. They are about clarity, communication, and choice, and sometimes absolutely yes, about walking away and protecting yourself from harm and other times staying in hard conversations because safety and wellness and health depend on it. I think that's the reframe that I want you to get out of this conversation the most, and you are not failing if you can't just walk away and detach. You're not weak for wanting connection. You're not wrong for needing people to learn to adapt and show up differently for you, and you do in fact need that. For the food allergy community and the Celiac community, the work is rarely about letting go. It's about figuring out how to stay connected without sacrificing your safety or your self trust.

We could do a whole other episode on all of the systemic and societal level changes that need to be done, and huge applause to those of you who are out there investing extra time and energy in healing those. But that's not what I'm talking about today. I just mean doing the work that deserves more care, intentionality and nuance than a quick slogan. We're going to end by talking about that nuance.

But first, I'm not here to criticize you if you have had to walk away from relationships because of this. I think that a much healthier alternative to approaching that when it's necessary is something called radical acceptance. It comes from a therapeutic approach called dialectical behavior therapy. There's also an author I love who talks about this from a Buddhist perspective, whose name is Tara Brach, and this concept does not mean approval or resignation, and it definitely doesn't mean giving up. Radical acceptance means fully acknowledging reality as it is without fighting it internally, even when that reality is painful, unfair, infuriating.

Instead of this mindset of, “This shouldn't be happening, they should get it. They should do better. I'm outta here. This relationship's done,” radical acceptance internally sounds more like, “This is what's happening right now. I don't like it. I didn't choose it, and this is the situation that I'm actually working with.” It might sound the same to you if it does, I hope that you'll look into this concept more and see if it can help you, because suffering increases when we're locked in a constant internal battle with reality.

It might sound like, “Why do I always have to explain this? Why is it my job to educate everyone? Why don't people take this seriously?” Those questions make sense. They are human. They're very valid, but radical acceptance helps us to separate two things: the pain of the situation itself, and then the additional suffering that comes from resisting the fact that this is the reality. When we radically accept, we stop pouring energy into wishing that the reality were different.

Radical acceptance doesn't mean. “I'm not okay with this. I'm walking away.” It means consideration of what matters to us, what we need to stay safe, what we're willing to engage in, and what we're not in full acceptance of the reality that we have been shown or that we've experienced. So for us in the food allergy and Celiac communities, it means accepting that not everyone will get it and perhaps still choosing to advocate. It means accepting that fear might show up without letting fear make the decisions, and it means accepting that our medical needs require ongoing communication and lots of other management skills without seeing that as a personal failure. This is very different from any catchphrase that encourages you to disengage.

Radical acceptance supports intentional engagement, grounded in reality instead of hope that people will magically change. Acceptance doesn't mean you stop caring. It means you stop fighting reality and start working with it.

And how do you work with it? There's this concept of the locus of control. This was developed in the 1950s and sixties as a personality construct within social learning theory, exploring whether we can look at individuals in terms of whether they attribute life events to their own actions. That's an internal locus of control. “I made this mistake. I am not worthy of close relationships,” et cetera. Or to external forces, “That was someone else's fault. That was bad luck. It's just fate.”

So, the theory is that these generalized expectancies, which are shaped by our past, and what has reinforced these beliefs, then dictate our futures, our motivation, our behaviors, and our life outcomes. So you can hear even in the description that they're quite extreme, and most people probably experience some combination of both of them.

A way that this is utilized a lot in common mental health and self-help activities is to draw a little circle and we talk about what's in our control and what's out of our control. The external things are almost all out of our control. Right? And then the very small circle of what we can control is internal. How do I respond? What do I say? What choices do I make? It can be very healthy to recognize what we don't control.

But looking at things in the black and white like this, turns things into a false binary. Either you can control it or it's outside of your control and you can let it go completely. And that misses the most important category of all, which is our influence. We can't control hardly anything, but we can influence many, many things in our lives. So, for example, I can't control what my son's teacher does in the classroom. And I can certainly have influence over what happens in the classroom by building a positive relationship, being proactive and reaching out, communicating in a positive and constructive way, sharing clear, direct, accurate information, staying involved, making sure that the 504 plan is in place and is being implemented, trying to prevent problems, but also touching base afterward and making repair and plan for the future with that teacher.

Here's another example. You can't control whether an extended family member understands food allergies. But you can influence what information they're given, how expectations are communicated to them, how much access they have to you or to your child or your space, your home, and what happens if safety isn't respected.

Influence is where most of the actual real world changes happen, and influence requires connection to other people, not withdrawal, not cutting off. It requires discernment. It's very situational and very personal, and it requires flexibility and gray area, not black and white thinking. What I want to do is help you to dive into that gray area. I want to give you support and knowing how to navigate that.

Try to let go of using the word control and think about influence. Try to let go of that black and white thinking because no relationships are black and white. No relationships are at either of those extremes. Certainly you don't have control in any relationships, but you do have influence on almost every relationship and every person that you encounter. And I'm sure there's almost no one in your life who exists at either extreme of what relationships can look like. Very few people know everything about you, have access to every part of your life, are with you all the time, and have unlimited emotional and physical access to you.

Most of our relationships already live on this spectrum of contact and access. Most people get limited information about us. There are very few people that we tell all of our deepest secrets to. Almost all people have boundaries. No, you can't call me at two o'clock in the morning. No, you can't have all my money. Almost everyone in our lives has specific roles and is interacted with only in those specific roles. Some of those might be very narrow. That might be very situational, but in reality, our relationships already have this whole range of boundaries. Some of them are implied. Some of those are things that we've set very specifically.

I want you to recognize that you get to choose the level of access in every relationship to every person in your life. When you think of it that way, boundary setting becomes much more doable. You might not go no contact with someone, but you might limit what decision they're involved in, how you communicate with them.

With your child's school, depending on your experiences, you might decide to shift communication to writing or bring in formal protection in the form of something like a 504 instead of informal requests that haven't been honored.

With family, you might stop attending food centered events with specific people. You might set specific safety rules. You might decide what conversations you will and won't engage in, and that's not avoidance. That is a way to not isolate yourself and cut yourself off from important connections in your life if it's not necessary. That is intentional boundary setting within reality, with acceptance of what the reality is.

When we understand that most relationships live in this gray area, it becomes easier to let go of the all or nothing thinking to protect safety without isolating and to stay connected without sacrificing our nervous system's sense of safety. Going no contact sometimes is absolutely necessary for safety, for health, whether it's physical or mental. And I want to say that very clearly.

Here are some alternatives that might work for you that exist in the gray area:

Event only contact. You show up for specific events like birthdays and important holidays, but not necessarily everyday life.

Location based boundaries. You only see someone in neutral places. We can meet you at a safe restaurant. You can come to our house, we can go to the park.

Topic based boundaries. There are certain people that we just don't talk to about certain subjects. Sometimes we can use that more intentionally to create some safety.

Sometimes the change is internal and we can set internal boundaries. We can stay in the relationship, but change how much emotional energy we invest. Be more realistic about what we're expecting from this person, and that can protect us emotionally.

Another thing that many of us do is deprioritize relationships. You might have a close friend who just didn't get it, who was in your inner circle, and you might not want to cut them off entirely, but they might not remain one of the people whose relationship is a priority in your life at that point in time.

You can have boundaried contact with someone. You can go into an interaction knowing I'll engage or we'll stay unless this happens. And then if this thing happens, here's what we're going to do, we will leave, we'll leave the room and not interact with that individual anymore. Obviously that can vary widely.

Another aspect of this can be recognizing which people or situations or systems might require you to intentionally regulate before you connect. So I know that every time I'm making a phone call with this person, I might need to sit and take some deep breaths and ground my feet on the floor, or be moving and take a walk when I talk to them so that I can move energy through my body as we're speaking. Get in touch with who taxes your nervous system and what might support you in interacting with them when you need to.

As I'm going through these, I know that you can recognize you're already doing many versions of this in many of your relationships, maybe without having any language for it, but naming it matters because when you name it, you're choosing it. You are realizing that you have this whole menu of options you can choose from in this relationship instead of feeling trapped. The urge to escape, to flee, to get out of this relationship goes back to our fight or flight response. So please consider when you have that urge to just cut someone out of your life, whether it feels logical, whether it feels truly grounded.

Because you can't heal in isolation. Avoidance is a temporary way to find safety, it can be a fight or flight response and pattern, and it's not a long-term way to live. If you are walled off, you're protected, but not connected. If you're boundaryless, you're connected, but exposed. Wellness lives in the middle.

You're allowed to protect yourself and stay connected.

Here are three action steps to support you after listening to this episode.

Number one, choose one relationship where you're struggling, and gently name the gray area. This might be a relationship that feels tense, draining, or confusing. Instead of asking yourself if you keep them around or cut them off, ask yourself healthier questions like, what level of contact feels sustainable right now? What information or access do they need versus what feels optional? You don't have to change anything immediately. Just notice and consider where you are on the spectrum between full contact and no contact, and that might help to reduce the pressure and create more of a sense of choice.

Number two, practice shifting from thinking about control to influence in one situation in your life. So again, pick a scenario that's tricky for you where food allergy management intersects with other people. A school setting, a family gathering, holidays are notorious, maybe it's a workplace or social event. Notice what you cannot control, and then name a small way that you might be able to exert influence if you choose. It's not about convincing everyone, it's just using your energy where it can actually have impact.

And number three, nurture connection in your life. You do need to be connected to other people even if some of those connections are in small or in imperfect ways. So if this episode stirred up feelings of loneliness, grief over the losses of relationships, or just pure exhaustion of how you've been navigating it all, you're not alone. Consider reaching out to one person who does get it. Join a support and advocacy or community space, whether it's virtual or online, even quietly, or allowing yourself to name without judgment, just how hard this can be, what your needs are or what's missing.

As always, thank you for listening. I hope that I was able to approach this in a way that hits home for you, and I would really love to hear your feedback about this one, because I know it's a sensitive issue. This is true for all episodes, but if you want to reach out to me, I would love to hear your thoughts, how this impacted you. If you're exploring these concepts or trying out some of the strategies that I'm trying to share with you, it's really helpful to me to shape the podcast, to know what will be the most helpful for you as an audience.

And as always, sharing with people who might also enjoy it, liking, subscribing, all of that helps me to keep growing the show and I appreciate it so very much. Thank you for spending your time with me and listening.

32:51

The content of this podcast is for informational and educational purposes only, and is not a substitute for professional medical or mental health advice, diagnosis, or treatment. If you have any questions about your own medical experience or mental health needs, please consult a professional. I'm Dr. Amanda Whitehouse. Thanks for joining me. And until we chat again, remember don't feed the fear.