Three Thriving On- Three Ages and Three Views on Living with Food Allergies

We started our food allergy journey six years ago when our daughter was diagnosed with multiple life-threatening allergies.  In that time, we have learned how to stay safe, developed strategies for living in our new normal, had good days, had bad days, realized the positive side of food allergies in the form of healthier eating and struggled as our bubble of control continues to shrink as she has more and more opportunities to be on her own and away from the allergen free home we have created.  I often wonder what it will be like as she gets older- what does and will she think about her allergies?  What will her challenges and successes be as she navigates life with food allergies?  What will she worry about when it comes to her food allergies? What path will her food allergy journey take her down. So, I decided to interview a few people at different stages of life with food allergies about their journey. 

I asked the same questions of three people.  My daughter, who is seven.  She is allergic to all nuts, sesame, chickpea and sunflower.  Cameron, an active high school student, who is living with allergies to peanuts, tree nuts and legumes since he was three.  He was also allergic to chocolate but has recently outgrown this allergy (yay!).  Sarah, a twenty nine year old working adult, who was diagnosed with fish and shellfish allergies when she was in her mid-twenties. 

It was interesting to see what strikes each person as important and meaningful in their own food allergy journey.  We all forge our own paths and make our own decisions about what is right and how to stay safe, but I hope you will enjoy reading this look at food allergies across three different ages and stages of life.  And, a special thanks to my daughter, Cameron and Sarah for sharing their stories and how they thrive on with food allergies!

  

What are two things you wish that people without food allergies
understood about food allergies?

• My Daughter: That you should always carry an EpiPen® if you are near a person with a food allergy.  There should be an allergy free table at every school to keep everyone safe.

• Cameron: The first would be that allergens can be very well hidden inside of food. Just because the allergens aren't obvious, such as nuts being sprinkled on food, doesn't mean they aren't there. I've found nuts in packaged shredded cheese, pasta sauce, and many bread products. You can never really tell what's in a food item until you read the label, which is a valuable skill you have to master for living with food allergies. The second thing that should be understood by those without food allergies is understanding why a person with food allergies may be uncomfortable eating your food. We don't mean to be rude when we turn down offered food. On the other side, people with food allergies need to communicate their concerns well, to ensure safety and explain why we can't eat certain things.

• Sarah: I wish people without food allergies understood that having food allergies is not a choice or a trend, that we're not making it up or exaggerating how serious it is.

 What is the most challenging thing about having food allergies?

• My Daughter: To have ask about food before grabbing it in a public place.

• Cameron:  The most challenging part of having a food allergy is its way of acting as a social barrier. When I was in grade school I was subject to bullying because my parents chose to have me sit at a designated peanut free table, which alienated me from the rest of my class. I also wore my EpiPen® on my belt a big bulky flashlight holster. While the younger kids were in awe at what they perceived to be a light saber, some of the kids in my own class gave me endless torment for my differences. As I grew older, I lost my fear of my food allergies, and instead developed a wary respect for them. This development came through becoming comfortable with my ability to control what I eat and successfully avoiding my allergens for so long. This transition took place around eighth grade, when I stopped eating at the peanut free table at lunch. I started sitting with my friends, who understood my food allergies and tried to sit away from me if they ate food that I couldn't eat. Currently, my food allergies don't set me apart socially any more, but if something comes up that could lead to exclusion, I've gotten very good at explaining what was going on to foster understanding. One particular situation where food allergies have been difficult in high school is dating. It's pretty awkward to try to explain why you can't kiss someone because you don't know what they have eaten recently. But as with all of my other food allergy related obstacles, I've been able overcome this issue through good communication.

• Sarah: The most challenging thing about having food allergies is the lack of freedom to eat whatever and wherever I want. There is a lot of planning involved: reading labels, calling companies to ask questions about their ingredients and policies, checking online allergen information if it's available, etc. If my go-to safe foods become unsafe for me or if they're out of stock, it can be a real setback and letdown.

What is the best thing about having food allergies?  

• My Daughter: I get to sit at the peanut free table.  I like that I get to sit next to the hallway window and watch people walk by.

• Cameron: I've been able to grow as a communicator because of my food allergies. People with food allergies have to be able to voice their concerns for their safety, and learn to talk to people. My experience with communicating about food allergies has transferred itself into strong public speaking skills, which have been very helpful. I also was able to go to Washington D.C. to lobby for the Food Allergy and Anaphylaxis Management Act. This gave me the opportunity to sit down with Senators, the Speaker of the House, and Representatives to discuss food allergies and how we can pass legislation to make life with food allergies safer. That was one of the most profound experiences I've had in my life, but it wouldn't have been possible if I didn't have food allergies.

• Sarah: The best thing about having food allergies is that I make healthier choices when I eat. I can't rely on processed convenience foods, so I mostly cook homemade meals. Bonus: I've learned to love cooking and get creative in the kitchen!

 What have people done (or not done) related to your
food allergies that has impacted you?

• My Daughter: My mom makes treats for birthday parties that I go to so I have a dessert if I can’t have the dessert there.

• Cameron: Cameron chose not to answer this question.

• Sarah: My husband hasn't eaten seafood since I became allergic to it. I didn't ask him to avoid it, but the solidarity means a lot to me and makes me feel less alone when it comes to food. My mom has spent hours cooking allergen-friendly meals for me, and my dad has gone out of his way to find the specific foods that I use. I also have a friend who never complains about eating at the same restaurant when we go out. I could tell you dozens of other ways that people have supported me with my food allergies, and I'm grateful for every single one. They make the burden of having food allergies easier to bear.

 

 What do you worry about most as it relates to your food allergies?

• My Daughter: I worry about not knowing when I might have a reaction.

• Cameron: I worry about improper labeling and poor transparency within restaurants. While labeling is required by law, contamination and recalls are fairly common and worrisome. Restaurants can assure you that something will be safe, but you can never really know what goes on in the kitchen when your food is being prepared. But with all things in life, there is an element of risk, and you have to learn how to balance risk management with living you life.

• Sarah: I worry that foods I eat will be mislabeled and cause me to have a reaction via cross-contact.

 Do you carry your epinephrine with you at all times? 
Why or why not?

• My Daughter: I don’t carry it, but my mom or teacher carries it for me.  They do it so  I can carry other things and so in case I have a reaction my medicine is right there.

• Cameron: Yes I do. It's the only way to reverse an anaphylactic reaction. To not carry one with my severity of food allergies would simply be foolhardy.

• Sarah: I carry my epinephrine with me at all times because you never know when you might be exposed to your food allergens or develop new ones. Better safe than sorry!

If someone you knew were to be diagnosed with food allergies what
advice would you share with them? 

• My Daughter: Read labels, ask before eating, and stay away from things that might have your allergens in them.

• Cameron: I would tell them to research their condition, and practice how to communicate your needs and concerns in restaurants. Learning what food to avoid and how to read food labels is also extremely important. Also, they need to understand that they shouldn't try to put themselves in a bubble. They have to learn how to have a full life without being overly burdened by their allergies.

• Sarah: If someone I knew were to be diagnosed with food allergies, this would be my advice: Research and learn everything you can about food allergies, especially yours. Sign up for newsletters and subscribe to magazines about food allergies. Follow people, companies, and organizations in the food allergy community online. Join a support group for people who have food allergies or who care for someone with food allergies. Get involved in the food allergy community in other ways, like the FARE Walk. Always carry your epinephrine with you. Never compromise when it comes to your food allergies! Right after I developed my food allergies, the best advice I got came from a message board, and I've followed it ever since: "If I don't know, I don't eat it."

I love all of their advice and hope you will share it with others too!  Thrive On!

If you find this post helpful learn more about Tami and her company, Thrive On Consulting, which helps families and individuals dealing with food allergies, and follow her on Facebook 

Food Allergies and Luck

It is March- shamrocks, leprechauns and wishes for good luck are everywhere.  But what does this have to do with food allergies?  I think it is a lesson in luck.  Luck is defined as, “success or failure apparently brought by chance rather than through one's own actions”.  One thing is certain, when it comes to food allergies you cannot leave your safety to luck.  Being thoughtful, prepared and taking intentional action will help you Thrive On.  This week my Thrive On 3 is all about steps you need to take to stay safe- don’t leave it to luck!

Carry 2 EpiPens® at All Times
No matter where you are going or what you are doing, if you have a food allergy you have to have your EpiPen® with you.  Severe reactions can escalate in minutes and being without your epinephrine could have dire consequences.  Don’t risk it- keep your emergency medications with you.

Last year, there were multiple times that I was scrolling through my Facebook feed and learned of yet another food allergy related death. As I read these stories with tears streaming down my face from sorrow for the families to fear about my own daughter’s safety, one thing frequently struck me in these stories- often the person did not have their epinephrine with them.

Yes, there are challenges to carrying around medicines, but at the end of the day I would rather have an inconvenience than an irreversible outcome.  There are a number of great carriers out there.  We use the AllerMates Allergy Medicine Case.  It fits two EpiPens®, our antihistamine and includes an ID card with contact information.  We have had the case for two years and it is still in great condition despite the fact that it is transported everywhere and passed off multiple times throughout the day at school to teachers, cafeteria staff, and car pool monitors.  Frio offers a great insulated bag for summer time heat when it is essential to keep your epinephrine temperature controlled.  Some other great carrier options are offered by Allergy Apparel and Epi Essentials (check these out for older girls- so stylish and functional!).  Also, if you register for the My EpiPen® Program through Mylan they will send you a free carrying case.

These are just a few of the many options available.  No matter how you choose to carry your emergency medications, a fancy carrier or a simple bag or pocket, the important thing is that you carry two EpiPens® – everywhere, all of the time.

Be Your Own Advocate
One of my favorite songs is Brave by Sarah Bereilles.  In it she sings, “Say what you wanna say, And let the words fall out, Honestly I wanna see you be brave.”  I love these lines and think this is so true when you have food allergies.  Sometimes you have to be brave to speak up and make a situation safe.  It can be uncomfortable, but you have to advocate for yourself or your child.  No one else will do it, or do it in the way that you can armed with information about your allergens, medicines and strategies for keeping you safe.

Don’t apologize for your allergies, speak the truth and inform people about what needs to happen, or not happen, to keep you safe.  Do it in a way that promotes collaboration and partnership.  Going in defensive, which admittedly is extremely difficult not to do sometimes, will ultimately work against you.  Yes, you may be frustrated, scared, and sometimes even mad that things are the way they are, but take the time to advocate in a positive and productive way.

Come prepared to discuss facts, offer alternative solutions and go in with the attitude that a positive outcome is possible.  Most importantly, do it- advocate for yourself or your child.  Say what you need to say- I want to see you be brave!

Educate and Build Your Village
We have all heard the African proverb “It takes a village to raise a child”.  I have found this to be true time and time again, and especially since our food allergy diagnosis.  As much as I like to think of myself as a “superwoman”, I have learned you cannot manage your food allergies in isolation.  You need support from your village!

I have also learned that people just don’t know what they don’t know.  I think back to before our diagnosis- I am sure I took unsafe foods to the park and didn’t wash my daughter’s hands after eating all of the time.  All things that are unthinkable to me now.  I do the right thing now because I am aware, because I am educated.  Part of building your village is making sure that people know what they need to know- about your allergies and how to keep you safe.

It has often been my experience that when I take the time to educate on food allergies people are more than willing to help make accommodations or be thoughtful about what foods they serve.  It can be as simple as a call to someone before an event to training your caregivers on how to keep your child safe while you are away (Need help with that? Check out my blog post for FAACT on Food Allergies and Caregivers).

Brainstorm who is in your village- family, friends, school personnel, babysitters, neighbors, restaurant staff, camp counselors….develop your list.  Once this list is defined make sure your village is aware and prepared to help you and your child Thrive On!

Luck is great, but your safety is not a game of chance.  To Thrive On with food allergies, you need to be prepared and have people around you who are also educated and ready to assist in managing your food allergies.  If you need help educating your village or developing ways to advocate for yourself let me know- I am here to help you Thrive On!

Product Disclaimer:
Thrive On Consulting does not sponsor or endorse the products listed.  Nor has Thrive On Consulting been paid to include these products.  Products mentioned here are provided as ideas and suggestions to help you Thrive On with food allergies.

If you find this post helpful learn more about Tami and her company, Thrive On Consulting, which helps families and individuals dealing with food allergies, and follow her on Facebook and Twitter