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!
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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Written By Guest Blogger: Lori Moussapour, MA, LMSW
(Originally posted on www.ToEmpowerU.com; republished with author permission)
Mistakes are Opportunities to Learn
We all learn from our errors. After reading somewhere that “mistakes are opportunities to learn,” I used the mantra repeatedly with my own kids, suffering for years the subsequent eye roll, hoping that I drilled patience, risk taking and resilience into them, with such overt and subliminal messaging. But could I walk that talk? Could I tolerate my own parenting errors with self-compassion? Parenting mistakes are the hardest to endure, because the work matters more than any other. And what happens when the mistakes involve exposing your child to her food allergen accidentally?
I need more than one hand to count the times I made critical errors, exposing my daughter to her allergens. Even though my errors stemmed from inadequate education, as opposed to irresponsibility, the guilt and fear I felt after each mistake was profound. Nonetheless, I started to realize that every error taught me invaluable lessons, ones that actually helped me in my efforts to keep her safe.
Hidden Ingredients and Age Appropriate Expression of an Allergic Reaction
My youngest was diagnosed as allergic to eggs somewhere around nine months. Within 6 to 8 months of that day, I served her a turkey sandwich with mayonnaise. Can you imagine my guilt and panic as she tried to place her entire fist into her mouth? This mistake taught me the importance of identifying hidden allergens, and really reading labels. It also taught me about how preverbal infants and toddlers might express distress while undergoing an allergic reaction and led me to read up on the myriad ways that kids verbalize or indicate allergic distress.
Tether your Toddler!
A few months later, while traveling in Turkey, my husband and daughter went to a cafe for breakfast. Our little one toddled around the cafe interacting with a few other customers and the waiter, who found her particularly adorable, offered her a cookie. My husband, who feared an egg exposure, raced over and only arrived in time to scoop it out of her mouth. After a horrific reaction, that we later learned was anaphylaxis, we discovered that she also was severely allergic to hazelnut (and a host of other tree nuts.) This error taught us the importance of navigating your child’s independence (and in some cases even her measured distance from you) in healthy cultural and age appropriate contexts. For us this meant that we would be by her side until she understood and could be relied upon to never take food from strangers. Because we travel so much, it also meant that when in a country whose staple flour is an allergen, whose citizenry adores babies and toddlers and whose loving fingers seek cheeks to pinch and mouths to feed, toddlers needed to be tethered!
Beauty Products Beware!
Once after a long day’s work out of state I enjoyed a one hour debrief with colleagues, having coffee and eating snacks (mixed nuts) at a picnic bench near our work site. So far from home I relished the freedom to indulge in a treat I rarely ate, as we are a tree nut free home. I made the drive home in under 3 hours, without stops, trying to get there in time for a good night’s kiss. When I got home, my daughter asked me to help apply her lotion, as her eczema was flaring up. Without thinking (or washing my hands), I lathered her up - the entirety of her legs. To my horror, hives and welts grew at an alarming rate across her tiny limbs, and we had another sleepless and stress filled evening. I learned that I had to either be allergen free myself, or practice unequivocal handwashing after eating them. Two years later, on a dry spring evening, I shared my lip balm with my daughter, a brand she had used many times over. Soon thereafter her lips turned red, and began to swell. She was reacting to residue of something I had eaten presumably the last time I used the lip balm. This error taught me about the importance of vetting and not sharing makeup, especially lip or eye products. I carry two lip balms now - one for her and one for me.
Knowing when to use epinephrine is as important as how to use it!
One mistake could have been grievous. Following an accidental exposure to pistachio, while visiting family for a holiday card/craft writing activity, my daughter experienced two symptoms of reaction- an impending sense of doom and an odd sensation of dryness and fullness in her throat. I undervalued her panic and counted only one symptom, the physical one. I reached my doctor, luckily, who told me that we had a known exposure (pulverized baklava likely resulted in cross-contact on the shared markers), and she had two symptoms. She needed epinephrine!!! I always knew how to use an epinephrine auto-injector, but this mistake taught me the importance of being skilled at first recognizing when to use it (anaphylaxis.)
Degree of blame and responsibility… are all accidents equal?
I tip my hat to those of you who ask, “are all accidents equal?” I suspect they aren’t. The skeptics amongst you ask if trusting a waiter about a dessert’s ingredients is the same error as not bothering to read a label at all or not carrying epinephrine daily. While a small segment of our community may simply not treat food allergies with the seriousness it merits, research suggests that a large portion of accidental exposure nationwide results from barriers to needed financial and educational resources. A study conducted by Dr. Julie Wang of the Jaffe Food Allergy Institute of Mount Sinai looked at parental behaviors and food allergy risks, and found that almost half of the parents surveyed reported at least one risky behavior, such as not reading food labels or not carrying epinephrine. The authors hypothesized that these behaviors were likely a results of knowledge gaps, misconceptions and financial burdens. More research needs to be done on where accidental exposures take place, under whose care, when and most importantly, why.
Your best teacher is your last mistake
But even with a clearer understanding of exemplary behaviors, based on ideal education, global access to resources and medication, and reduced financial barriers to healthcare, parents are human! We will err, indeed with the best of intentions. Parenthood is the hardest job we ever have and yet there is no description or play book to help you through it. And those of us whose kids have food allergies live every day with added vigilance. The stakes are higher and so we must understand our allergens, read labels carefully, wash our hands when needed, not share food or skin products, and readily recognize and respond to allergic reactions. One famous quote, attributed to Ralph Nader, resonates strongly with me. “Your best teacher is your last mistake.” I submit that when we err, we let enough guilt in to refocus on needed vigilance, but we offer ourselves enough compassion and care to embrace the teachers in our life, mistakes included! I know I have had my share!
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