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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 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 is key during this phase, not only to gather evidence-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; and 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 who 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!