Another food allergy-related tragedy recently populated our social media feeds. This story involved a teenage boy, all set to graduate high school, but suffered an anaphylactic reaction to walnuts days before that led to his death.
Food allergy parents across the world feel these losses deeply. It can feel as if it's happening to someone in their own family, such as their own child. Inevitably it evokes intense emotions such as fear, panic, anxiety, and uncertainty, which may result in the loss of comfort with their own food allergy routines.
In short, these tragedies may make parents feel emotions often associated with trauma. These tragedies can potentially set parents back, boldly reminding them that food allergies can be unpredictable, even with evidence-based guidelines in place. It's a place of major discomfort, leaving many uncertain how to cope. It's very easy to fall into the rabbit hole of fear if you let yourself.
Given that these stories will unfortunately inevitably pop up on social media, what can parents, and food allergic individuals in general, do to navigate them and cope?
....Below are three tips to help empower yourself during these moments of raw emotion.....
1. Set Boundaries for Self-Preservation
While we may be drawn to reading these stories, it's important to evaluate whether it's a good idea to do so. Here are some questions to ask yourself to help you determine if you should immerse yourself in the details right now or not:
THIS MAY HELP: How to Set Boundaries - 10 Examples and PDF Worksheets from www.PositivePsychologyProgram.com
2. Reconnect With Evidence-Based Data
Our emotions have the incredible ability to disconnect us from logic. They're that powerful.... IF we let them take control. Sure, even with the best guidelines in place, tragedies can happen, but it's important to keep things in perspective as much as possible.
In times of tragedy, it is crucial that you reconnect with the established and evidence-based food allergy-related facts. In doing so, it not only helps to balance emotions, but also benefits you by:
THIS MAY HELP: The best sources for evidence-based information are reputable food allergy organizations, such as the American Academy of Allergy, Asthma and Immunology, the American College of Allergy, Asthma and Immunology, and the Journal of Allergy and Clinical Immunology. (Here is a study posted in JACI on Fatalities Due to Anaphylaxis to Foods)
3. Practice Self-Care
Practicing self-care is important, even when you're not navigating a recent food allergy-related tragedy.
Think of a car. If you aren't filling the tank with fuel, taking it in for routine checkups, and making sure to use it rather than letting it sit untouched for long periods of time, the car isn't going to run as effectively.
The same is absolutely true when it comes to our minds and bodies. Both need to be taken care of, which isn't easy to prioritize as a parent or busy adult. But in times of tragedy, self-care becomes crucial, as coping abilities are stronger when you're taking care of yourself. Here are a few questions to ask yourself in order to evaluate your own self-care lately:
Think about the things that make you feel a sense of calm, happiness, and connection to yourself, and work them in as often as possible, even if in very brief formats. Maybe it's reading an empowering passage each morning to start your day off right. Perhaps it's taking deep breaths and listening to the water falling while in the shower. Or even simply remembering to regularly eat meals and snacks so your body has enough fuel to get through the day.
Self-care is about quality, consistency, and ultimately prioritizing yourself so you are better able to navigate the daily ups and downs of life. It's never too late to make self-care part of your routine, and the time is never better when you're feeling heartbreak.
THIS MAY HELP: Check out 15 Grounding Exercises to Manage Stress from Anxiety or Trauma (post via The Mighty); Free Mindfulness Apps Worthy of Your Attention (via Mindful.org)
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When I think of Valentine’s Day growing up I think of the fantastic heart boxes filled with gooey chocolates my dad would get for me, my sister and my mom. The best part was not knowing what would be inside each one! Then at school I would get to fill my colorfully decorated shoe box with notes, lollipops, stickers and chocolates from my classmates. Valentine’s Day meant chocolate!
Now, as a mom with a child with severe food allergies, Valentine’s Day doesn’t bring up nostalgic feelings of joy as much as it brings up fear and anxiety. This is the same fear that comes up around Easter, Halloween and Thanksgiving. Holidays are focused around food. No matter how big or small the holiday is, kids look forward to celebrating with treats while nut allergy moms secretly begins to go into panic mode.
For kids with food allergies, most Valentine chocolates are off limits. What is also surprising is that many of the holiday lollipops and sugar candies are as well. People who don’t live with allergies can underestimate the cross-contamination risk that comes along with foods that are not filled with nuts.
Keeping your child safe is a priority for all parents, however for a child at risk for anaphylaxis from a trace of food that people eat every day, concern over safety requires a whole new level of diligence.
Beyond safety is the emotional toll on kids that comes from watching friends and classmates enjoying treats and not being able to be a part of it. Birthday parties, classroom celebrations and holidays all usually mean watching your child sit with his or her “safe” treat while everyone else is enjoying something else. Even if the “safe” treat is good one, it is still different. No matter how much kids enjoy a bag of Oreos, it does not compare when EVERYONE ELSE is eating colorful, sprinkle filled treats. When you are only six or seven years old it matters.
When treats are given out in class, most if not all of the treats wind up being tossed out because they are not safe.
It isn’t easy, so here are 5 tips to keep in mind for nut allergy parents approaching Valentine’s Day this year…
Keep an Open Dialogue, With Everyone!
Plan ahead. Talk to your child’s teacher and other parents about your concerns. Go into to the class ahead of time and discuss the plans for celebrating in the classroom. Ask to speak with other moms who may be bringing in treats or food and bring a list of items that are safe for everyone. Also keep the dialogue open with your child. Acknowledge that sometimes they will not be just like everyone else. Talk with your child about it. Ask them how they feel about celebrations and staying safe. Keep the conversation going, even if it is a difficult one. Show them empathy and let them know how you feel as well. Let your child know that it is ok to feel big feelings and sometimes it can be hard. Remind them that Valentine’s Day is about showing love and compassion and that they can do that even with different treats. Different treats can be special too.
Create New Rituals
Cover their door with red and pink hearts the night before or give them fluffy stuffed animal or heart shaped toy. Surprise them with balloons or a card on Valentine’s Day morning. Look for safe treats or non-food ways to make them feel special. If they are having food in school make sure to send a special safe treat to the classroom, something they chose ahead of time. When making Valentine’s for the class, do it together. Stickers, playdoh, bubbles and toy cars all make great Valentine’s gifts.
Educate on Self -Advocacy
Life is full of unexpected twists and turns and learning how to manage those is an important skill kids need to have. Know that your children will be in situations without you where they need to know how to handle their allergies in future years. Being able to say “no thank you” even when food is offered by an adult is a tough thing to do for little ones. Teaching them when they are young how to stay safe will help them (and you) feel confident that they will be more independent. Practice at home how to have conversations about allergies. Teach them what questions to ask and role play with them so they feel confident they can do it when with friends or at school. Ultimately, they will be their very best advocate.
Work with your doctor to fill out a detailed action plan. Keep it written down with your epi-pen and emergency medications. Don’t ever assume you can go anywhere without it. Practice your plan. Have drills and practice the action steps. You can even use your expired epi-pens on fruit to get a more realistic feel for having to use it. No matter how good your plan is, it won’t be useful if you aren’t able to follow it.
It is really easy to focus on what we can’t do or can’t have when faced with challenges like food allergies. We think that by focusing on all the things that could go wrong we are being prepared. The reality is, we will make ourselves a bundle of anxiety and stress if we constantly see allergies as an obstacle. There are always challenges in life, food allergies just happen to be one of them. There is so much more to parties and celebrations than food. Help your kids recognize and appreciate the time with friends, craft projects, games and fun that goes along with Valentine’s Day. See challenges as opportunities to grow and learn more about nutrition and health and a way to increase awareness, insight and empathy for others. For many of us moms with kids with food allergies we find ourselves so caught up feeling mommy guilt that we have trouble recognizing all we have to be grateful for. We wonder if we had done something different would he or she not have this allergy. Remind yourself that you did not cause this allergy. Let go of any guilt that holds you back from seeing the big picture.
“Your Child is not his or her food allergies. She or he is a wonderful, beautiful, kind and spectacular kid who happens to have food allergies. Just because it is a part of everyday life does not mean it needs to be your entire life.”
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!
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