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)
Feel like you could benefit from additional support
from a food allergy-knowledgeable
behavioral health or counseling professional?
Visit the Food Allergy Counselor Directory
to locate one in your area.
The food allergy community continues to express a need to focus more on the mental/behavioral health needs of individuals and families managing food allergies. Some may find this path relatively easy to navigate, while others share that they wished they had more support, including access to food allergy-knowledgeable clinical behavioral health professionals.
To gain a better understanding of these needs, Tamara Hubbard, LCPC recently created a short survey to obtain basic data on the desire for food allergy behavioral health services and gaining access to them.
Below are the results from a two-question survey titled "Access to Food Allergy-Knowledgeable Behavioral Health Professionals Connected w/Allergy Practices".
(This survey was circulated on social media and throughout food allergy support groups. At the time this was published, there were 116 participants who had taken the survey).
Yes = 70.7%; Maybe = 22.4%; No = 6.9%
Yes = 73.1%; Maybe = 19.1%; No = 7.8%
In addition to answering the two questions, participants were able to leave comments on this topic. Below are many of the responses:
The results of this survey show that more than 70% of the respondents would like access to food allergy-knowledgeable clinical behavioral health professionals. Many also are in favor of the counseling professional and their allergist collaborating in some manner to offer services that positively impact body AND mind.
Based on these results, it suggests that allergists have an opportunity to differentiate themselves from their peers by offering a holistic approach, which addresses the medical and psychosocial/mental health needs of their food allergic patients.
What You Can Do:
---What are your thoughts on these results,
and the general need for food allergy mental health services? ---
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.”
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