As I was sitting in my unusually warm sunroom on this beautiful December morning, a couple of my fellow food allergy advocate friends were engaged in a conversation via social media that got my mind thinking and my heart feeling.
The conversation was about filling unmet needs within the food allergy community, with mental health being one of them (a topic I am clearly passionate about). But that got me thinking about the overall evolution of food allergy support, for both the individuals and families, as well as those that serve as advocates. Is there a common path people take to become a food allergy advocate? How does one evolve from a newly diagnosed individual or parent into a food allergy advocate? Here are my thoughts on these questions.
Initial Period - The Self-Care and Foundation Building Phase
When the initial food allergy diagnosis comes your way, it can bring along a variety of overwhelming thoughts, feelings, and questions. You may feel like you can't get information quickly enough! However, during this phase, it's important to pace yourself. Think of this phase as building the foundation of your food allergy house - literally adding blocks of information, support, and resources.
If we build a house too quickly, or jump to working on the second floor before the foundation is secure, the strength of the house is compromised. Write down the most important facts you feel you need to learn in order to navigate day-to-day. Stay focused on the here and now, or near future - don't jump to five years down the line. Finding reputable resources and support groups are key during this phase, not only to gather evidenced-based information, but also so you can connect with a network that will help you build confidence and resilience.
This time is about you and your family - setting new routines, gaining increased comfort with the guidelines, and building confidence. It's okay to lean on the more experienced members and advocates within this community - they've been there and understand!
Middle Period - The Confidence Building and Broader Thinking Phase
Somewhere along the way, maybe without even realizing it, you start to gain confidence in navigating life with food allergies. There's no specific time frame for any of these phases. Rather, people move through them at their own pace based on a variety of factors: how they handle change; their vision of life with food allergies; access to reputable information, resources and support.
It's often during this phase when some in the food allergy community start to shift their thinking from simply helping themselves/their family, to helping a broader community. Maybe they want to help within their local community or school. Perhaps they feel they have a specific expertise or niche they can impact. Or maybe, through navigating food allergies themselves, they identify an unmet need within the community and set out to remedy it. Whatever the platform, the evolution of a food allergy advocate is a process that is amazing to watch.
While food allergy advocates are still walking the walk, managing their own food allergies or parenting a child with them, their food allergy house has reached a stage where they feel that it has the strength to allow them to help others. But remember, they took the time to build a solid foundation first - and it didn't happen overnight!
Late Period - Paving the Way to Pass the Torch Phase
This phase represents the time when you've been in the food allergy community for many years - long enough to see how it's changed over the years. You've seen how the research has impacted and changed food allergy guidelines. You've watched the support networks grow and offer more resources for the community as a whole. You are known as a mentor member of this village!
Often by this point, if you've chosen to become a food allergy advocate in some way, you've helped people build their own food allergy houses with strong foundations, including your own child or family. You have sage advice to share and because you can remember what it was like when you first received the diagnosis, you're happy to offer it. You are what inspires others to consider becoming food allergy advocates themselves. Maybe you even decide it's time to step back and pass the torch, as you know you've helped pave the way for new food allergy advocates to use their own voices to impact the community.
But here is the real message of this post.....
WE ARE ALL FOOD ALLERGY ADVOCATES!
.......The parent who teaches their child about their food allergy and how to keep themselves safe is an advocate.
.......The sibling that helps their brother or sister safely read labels at the grocery store is an advocate.
.......The child who says "I can't have that because I have a food allergy" is an advocate.
.......The non-food allergic individual who seeks information on how to accommodate someone with a food allergy is an advocate.
The fact that we are all food allergy advocates in some way, whether big or small, means that there will always be a constant source of food allergy education and awareness, and we should all be proud of that. So on the days when living with a food allergy seems too trying, just remember:
You are making a difference. You too are a food allergy advocate.
Decide what your food allergy journey is - your story - and live it!
(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.
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
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.
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.
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:
When we enter into a relationship with someone, many of us envision a fun-loving and exciting bond with a companion exhibiting qualities that bring value to the relationship.
So when a food allergy enters the picture, we are forced to unwillingly enter into a relationship - one that doesn't fit our typical healthy relationship model. Simply stated, we end up in a relationship with a potentially emotionally and physically abusive companion.
Given that we typically don't have the choice to break up with our food allergy, we have to learn how to turn a bad relationship into a healthy one. So how can we accomplish this seemingly impossible task?
Accept the Not-So-Good Qualities & Identify the Good Ones
Think about your significant other, or even a close friendship. I bet you can identify both good and not-so-good qualities associated with that person. In relationships, since there is no such thing as perfect, we find ways to live with the characteristics that we find less than desirable in our mate or friend.
Try this thought on for size - your food allergy is just another relationship in your life. This "person" comes with positive and negative qualities. However, unlike other relationships, where you have a choice to engage or disengage, that's not an option with this one. You're forced to accept your food allergy as it is - it's the ultimate test of acceptance.
If you're going to have this relationship in your life for the long-haul, it can be useful to focus on ways that it may actually enhance your life, rather than only cause problems. You're probably well-versed with the not-so-good, and even downright bad qualities, but can you identify some positive aspects of living with your food allergy?
Identify and Be Firm With Your Boundaries
With relationships, whether it's with a family member, friend, or significant other, we typically set boundaries that help us maintain healthy connections. Those boundaries may relate to how much time is spent together, expectations, division of responsibilities, etc.
As your food allergy is an additional relationship in your life, you'll need to set clear boundaries with it as well. Some examples of boundaries you might want to set with this relationship are:
Being forced into a relationship with someone, or in this case, something that we don't like is a tough pill to swallow. But when we can't exercise the right to break up with it, we're better off finding a way to live cohesively with it. Otherwise, we find ourselves in an emotionally draining relationship pattern with our food allergy, giving it ALL of the control rather than finding ways to live harmoniously. What relationship rules do you have with your food allergy?
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