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(If you're reading this, you've likely already read Part 1 and Part 2 of the "4 Things Counselors Should Know About Food Allergies" series. If not, I'd suggest you read those first). When people receive a food allergy diagnosis, it has the potential to turn their world upside-down. I shared some of my personal thoughts and feelings from when my youngest was diagnosed with a peanut allergy in my article, "Navigating the Emotional Seas of Food Allergies: One Parent's Journey Towards Resilience." ""In an instant, it feels as though your world has been turned upside down, and that everything you envisioned for your child’s future is no longer possible. While he had a moderate anaphylactic reaction after two bites of a peanut butter and jelly sandwich just days before, I was still living in denial. I didn't feel that I could handle the reality of what my gut knew was true. That all changed with one phone call. In that moment, it didn’t matter that I was a licensed clinical professional counselor, trained in helping others cope with their feelings; these emotions were too raw for me to process." Once past the initial shock of the diagnosis, people must immediately get to work on creating new guidelines and routines in order to ensure safety. That requires absorbing a lot of information, digesting it, and then putting it into practice. So it's no surprise then that this process is made easier if support is received, especially from family members and schools. In an ideal world, those managing food allergies would receive understanding, compassion, and support from all of their networks. Unfortunately, that's not always the case. #3 - Families Are Often Dealing With The Lack of Support From Somewhere - Usually Within the School or Family Systems  Photo Credit: Pixababy (JohnHain) Too often we hear of schools that aren't supportive, even with the least restrictive of safety precautions, or extended family members who believe that safety precautions are examples of over-reacting. It's crucial to know that while most can accept the fact that foods can be dangerous to those with food allergies, many people aren't as understanding or accepting when it comes to the specific details of living with food allergies or implementing food allergy safety plans. This lack of support can make those with food allergies feel like they're headed upstream without a paddle. Imagine if your child had diabetes and you had to convince others that it was a serious illness requiring specific protocols in order to keep your child safe. Those managing food allergies often find themselves needing to convince people just how serious in nature food allergies truly can be. Therefore, you can understand why it'd be frustrating and downright anger-producing for people whose support systems don't view food allergies as a serious condition, despite being able to accept protocols for other food-related medical conditions such as diabetes. When working with someone managing a food allergy, it's important to assess their support network in order to understand whether this is a source of relief or stress. To help with that assessment, here are some common areas where those managing food allergies may feel unsupported. SCHOOLS Food Allergy Guidelines - The CDC created a toolkit to help schools implement the Voluntary Guidelines for Managing Food Allergies. Therefore, in theory, schools that utilize these guidelines *should* have a decent understanding and use of food allergy protocols. Unfortunately, many food allergic families are still met with resistance and lack of understanding/adherence to their emergency action plans, even from schools with a food allergy policy in place. If that's the case with schools that have policies, can you imagine how difficult it must feel for those families that attend school districts *without* a food allergy policy? The daily uncertainty and fear associated with sending a child to a school that exhibits inconsistent or poor food allergy protocols would likely be insurmountable for many. Research about parent perspectives on school food allergy policies was published in 2018, and it supports many scenarios shared via online food allergy support groups. Some insights revealed from this research that may be helpful to know are:
504 Plans - Some families opt to have a 504 plan, which is a written document that outlines the accommodations the school will provide. This plan helps hold the school accountable by "guaranteeing that students with disabilities will receive the services necessary to get all the same benefits of an education as all other students." It typically addresses important information such as where the epi pen will be kept, and necessary accommodations for the classroom, lunchroom, and on field trips. However, for some, getting this 504 plan established is nothing short of a battle, as some schools use a variety of reasons to imply that those with food allergies aren't eligible for this plan. Therefore, some clients will need support and guidance through the 504 planning process, or at the very least, help coping with the emotions that arise when schools don't work with the family to accommodate food allergies in a reasonable manner. Bullying - There are many reports of bullying incidents against children with food allergies. A research study conducted in 2011 on this very topic revealed that "45.4% of the children and 36.3% of their parents indicated that the child had been bullied or harassed, and 31.5% of the children and 24.7% of the parents reported bullying specifically due to FA, frequently including threats with foods, primarily by classmates." Additionally, "parents knew about the child-reported bullying in only 52.1% of the cases." A longitudinal study on food allergy bullying was published in 2014, which concluded that any length of bullying was associated with lower quality of life for the child, and suggested that parental involvement was key in finding a solution to the problem. It might be assumed that all bullying that food allergic students experience comes from their peers. However, that's not always the case, as there are many reports of students being the recipient of negative comments and actions from adults, such as teachers or coaches. When these adults go out of their way to make comments that highlight a child's food allergy or single them out as the reason for changes to activities, it is humiliating and often interpreted by the child as bullying. Therefore, it's key to assess how food allergic child clients feel about navigating the social aspects of school, both relating to peers and adults. Be on the look out for other potential behaviors that might be masking how the child feels, especially if they're unable or unwilling to verbalize bullying or social exclusion incidents. FAMILY When family members offer understanding and are willing to adhere to food allergy safety guidelines to allow for inclusion, it can be as if a weight is lifted. But for those that are met with resistance or even disbelief from family members, that weight gets exponentially heavier since many are then faced with tough decisions, such as whether to miss holiday gatherings or even, in some cases, whether or not to sever relationships. Nicole Smith, the creator of the Allergic Child site, shared experiences where her own father suggested she was being over-dramatic about her son's allergies, even going so far as sending research studies suggesting she expose him to his allergens. It's not uncommon for the lack of support from family members to put additional strain on the marriage or relationships within the immediate family. Because emotions run high when it comes to food allergies and family conflict, it will be important to gain an understanding of the family dynamic as well as the conflict. Pay attention to generational divides and cultural upbringing within family systems, as these factors can impact how family members conceptualize food allergies. Families navigating these issues will benefit from guidance on how to educate their loved ones about food allergies, develop a united front to address conflicts, create a plan on how/when to address the conflicts with the family member(s), and what to do should the outcome not be ideal. FINAL THOUGHTS.... Food allergies are typically a lifelong condition, so it's key to understand that there will be chronic stress as well as episodes of acute stress. Just as with any medical condition, support is essential for those managing food allergies. For some, your understanding and willingness to learn about life with food allergies might represent the only source of support they receive. For others, you'll be an additional layer of support to help them through the episodic phases that require more guidance. Being aware of the fact that true food allergy support can often be inconsistent and spotty will only help you better understand your food allergic client and the challenges they may be currently facing or have previously faced. June 2020 Update: Due to COVID-19, many school districts in the U.S. are currently contemplating various plans to accommodate schooling for the 2020-2021 school year. One of the suggestions in the CDC's recent recommendations for returning to school includes students eating lunch in their classrooms. For some with food allergies, this may pose an additional layer of risk at school. The following resources may be helpful in understanding this factor in more depth:
If you're working with a client who has food allergies and feel you need more information to educate yourself, check out the following resources, in addition to the links within this post:
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(If you're reading this, you've likely already read Part 1 of the "4 Things Counselors Should Know About Food Allergies" series. If not, I'd suggest you read that one first). In Part 1, we explored some basic concepts about food allergy-related anxiety. We bridged the path between anxiety and its impact on quality of life. We touched on how the anxiety is different than generalized anxiety, as it's clearly connected to continual perceived and actual health threats. But wait! There's something else that tends to cause an additional layer of anxiety for those managing food allergies: reading (and trusting) food labels. #2 - Food Labeling Laws Often Create An Additional Layer of Fear  Photo Credit: Pixababy (Alexas_Fotos) It's often assumed that food products will have clear and consistent labeling, highlighting not only the ingredients, but also whether the food was manufactured on the same line or in the same facility as allergens. Unfortunately, it's not that cut and dry, which often adds an additional layer of fear and anxiety for those managing food allergies. Per this article on Kids With Food Allergies,
As stated, thanks to the Food Allergen Labeling and Consumer Protection Act of 2004, there are some guidelines for food labeling, but there's still lots of grey area for food allergic people to navigate. To begin with, in the US, only the top eight major allergens are required to be clearly listed if they're an ingredient, leaving those with allergies to other foods potentially unsure if it's in that food item. Additionally, given the fact that there's no requirement or standard language to use when a company *voluntarily chooses* to disclose that an allergen was used in or near the preparation of the item, that uncertainty continues to grow. Imagine if you already had fight-or-flight levels of stress due to day-to-day food allergy navigation, and then were tasked with trying to buy foods for your child that were deemed safe, despite the current labeling laws. It might feel like trying to solve a Rubix Cube without any directions - doable, but extremely challenging! With labeling laws that aren't required to be completely forthcoming, consistent and transparent, those uncertainties just get piled on top of the already high levels of anxiety, and that's where the work is needed. Here's what some people managing food allergies say on this topic:
Essentially, for those managing food allergies, buying food can feel a bit like playing Russian Roulette, especially for those that are newly diagnosed and may be feeling overwhelmed with most decisions. Most people don't know how much of their allergen their body can handle before reacting (this is also known as their allergen threshold). For some, reactions start by just touching the allergen (especially if they then touch their eyes, nose, or mouth), or by ingesting even trace amounts. It's important to know that all people with food allergies have varying degrees of comfort with their allergen. That comfort level is typically based on a combination of things - information from their allergist, any previous reaction experiences, and how much risk they're willing to take. Therefore, some of your clients may not pay much attention to the voluntary "may contain" labels and likely won't find food shopping as stressful. But for those that do avoid items with a "may contain" warning, expect the stress levels to be higher. It will be essential to help these clients assess potential risk levels when buying foods (or eating out), learn to navigate the intrusive fearful thoughts surrounding food choices, and establish their comfort zones with a variety of foods. Additionally, as is the case in working with anyone with a food allergy, it will be crucial to help them learn to accept that no matter what, there will be a degree of uncertainty in *all* choices, but that it doesn't always mean something is unsafe. FINAL THOUGHTS..... It's important to understand how current food labeling laws impact those managing food allergies, how it may present an increased risk of reaction, and how this combination of factors often adds an additional layer of anxiety. Without understanding this aspect of the food allergy puzzle, you'll be putting it together without all of the pieces in play. June 2020 Update: Due to the COVID-19 pandemic, the U.S. Food & Drug Administration (FDA) issued an announcement in May 2020 that they were allowing temporary flexibility in food labeling requirements to decrease supply chain disruptions. To learn more about these temporary changes and how they may impact those managing food allergies, the resources below may be helpful:
Subscribe, bookmark, or stay tuned for parts 3 & 4 of the "4 Things Counselors Should Know About Food Allergies" series! If you're working with a client who has food allergies and feel you need more information to educate yourself, check out the following resources, in addition to the links within this post:
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Facebook pages: Food Allergy Counselor blog & Tamara Hubbard, LCPC Twitter: @TamaraTweets As counseling professionals, we aren't supposed to know how to work with *every* kind of client. Rather, many of us have specific areas of focus or client populations with whom we work. As a food allergy mom and family therapist, one of my focuses is working with those trying to navigate the emotional aspects of living with food allergies. But even working within our focus areas, there are still times when clients come into our offices presenting with situations or conditions that we're not very familiar with. When that happens, it's up to us to either educate ourselves, or if necessary, refer out to someone skilled in that particular area. When you have a client managing food allergies, but you only know the basic information that you may have learned through a friend with allergies, your child's school, or the occasional article, it's necessary to gain more insight. In general, clients managing medical conditions have many layers added on top of the typical presenting problems list, and food allergic clients are no different. I've come across anecdotal stories of food allergy families seeking counseling from mental health professionals that don't know much about the condition. While many felt that the therapist was helpful, despite the lack of food allergy knowledge, there is unfortunately a large number of reported experiences where clients shared that they left counseling feeling very misunderstood, unheard, not helped, and in some cases, worse. Some reported scenarios I've come across are:
I admit - before I had a child with a food allergy, I may have viewed clients with food allergies very differently. My counseling goals would still have been to help them navigate the emotions and scenarios, but if I only knew the very basics about food allergies, I'm sure I would have missed some key pieces to the puzzle, which could likely result in my clients feeling that I was missing the mark. In an effort to help my fellow counseling peers understand some of the nuances their food allergic clients are dealing with, I'm outlining, in a four-part series, four crucial things to know about those living with food allergies. Additionally, these posts will contain resources to gain further education on each topic and on food allergies in general (these are linked within the article or at the end). After all, with 1 in 13 kids being diagnosed and around 15 million Americans presenting with food allergies, you're bound to have clients with food allergies at some point in time. #1 - The Anxiety is Real, Layered & Different Than Generalized Anxiety  Photo Credit: Pixababy (wokandapix) These days, most people know the basic facts about food allergies and typically think it's this simple: If a person is allergic to a food and they eat it, they will get very sick and could potentially even die. Therefore, they should just avoid it; simple as that. Unfortunately, the reality is that it's not that simplistic when you're actually living with food allergies. If you're working with clients managing food allergies, then it's important to know that the anxiety has layers of causes rather than just one simple "cause and effect" nature. The anxiety and fear begins at diagnosis and is woven through every experience for that child and the parents/caregivers. Understanding that those directly impacted by food allergies *will* have anxiety is key, because that anxiety will be a constant, even if its levels rise and fall. Food allergy-related anxiety isn't just about the fear of death. Rather, at its core, it has a whole host of causes, as Gia Rosenblum, PhD so eloquently wrote in her recent article "Food Allergy Death Is Not Our Only Fear". The anxiety and fear typically impacts each member of the core family and not just the allergic child, as they all witness and are active participants in the day-to-day management required to keep that family member safe. Parents/caregivers often have a constant feeling of fear, even if latent at times, which is frequently connected with the concerns of accidental exposure, as everyone has varying threshold levels with their allergen. Quality of life, especially for parents/caregivers, is often negatively effected, even if they feel empowered to navigate situations. The food allergic child may develop anxiety for a variety of reasons, such as: fear of a reaction or death; fear of eating around others in case of accidental exposure; anxiety about being different, being left out, or being bullied (outright or even covertly). Additionally, if a person has had an anaphylactic reaction, even if they had low levels of anxiety previously, the fear, anxiety, and PTSD-like feelings are typically high for an extended period of time afterwards, adding on additional layers. Of course, this is just a basic sampling of the food allergy-related anxiety layers, but it starts to paint a picture of just how much this condition potentially impacts the mental health of all of the family members. The primary counseling work needs to be focused on helping the family accept the anxiety, develop the ability to reality test in order to determine if anxiety levels are appropriate for each situation, and create a plan on how to navigate the developmental phases with the added layers of anxiety, fear, and food allergy guidelines. To help with these goals, in addition to utilizing counseling techniques grounded in CBT, Mindfulness, Solution-Focused, and Narrative theories, consider checking out FARE's list of food allergy books for all ages, or Allergic Child's books and magazine suggestions to assist. Additionally, look for a future post with further insights on working with food allergic clients with anxiety. Subscribe, bookmark, or stay tuned for parts 2-4 of the "4 Things Counselors Should Know About Working With Food Allergic Clients" series! If you're working with a client who has food allergies and feel you need more information to educate yourself, check out the following resources, in addition to the links within this post:
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