Six years ago I became a “food allergy Mom.” Not a title I ever wanted, but one I take very seriously. I’ve written quite a bit about how we manage food allergies in our lives, house, school, etc. What I don’t ever talk about is how other families do it. Because each food allergy family is different. And each one has a different comfort level with risk when it comes to the potential of a food allergy reaction.
And from what I suspect stems from fear, and confusion about the way we all act differently, there can be a lot of judging of people with food allergies. Non-allergy families judging “food allergy parents” for being too dramatic or asking too much, children judging their peers with food allergies for being different, family members feeling burdened or resentful about having to change family traditions or being asked not to serve favorite-recipes at family gatherings. Oh, and families with food allergies judging other families with food allergies because they don’t follow the same “rules” as they do.
It’s very confusing to “non-allergy” people to understand why some families ban food their child is allergic to from their houses (such as peanut butter) while others don’t. Some families allow their children to eat food that has “may contain” warnings on it, while others do not. Some parents are okay with EpiPens being in a nurses office across school while others have their child self-carry (wearing a belt, or keeping in a purse or backpack at all times). Some families might go to a baseball game without hesitation, while others will only attend peanut-free games. So many differences.
Why don’t all families with food allergies adopt the same practices – wouldn’t it be great if there were a “best practice guide for managing food allergies?” Well, there are plenty of books on the subject, but not everyone reads them! One reason I suspect families learn different things about their diagnoses and how to manage them is because there are differences among doctors. For example, if a family was diagnosed in the ER following a severe reaction and never follows up with an allergist, they may only have a small amount of information and base their practices based on that. They are not getting the same level of specialized care and instructions that an allergist could provide. Some people see a pediatrician or family doctor for food allergy management, and while they may have good general medical knowledge of food allergies, they will definitely not have the same specialized education and experience as a board certified allergist.
Families also have different interest levels in how much to research food allergies and how much change they are willing to make in their family to reduce risk. Some people are more comfortable with risk. Some people think “this works for me and I’m allergic so why would I approach it any differently with my child?”
My experience has been that the most conservative food allergy families I know are under the care of an allergist, have done a lot of research and try to stay on top of the latest food allergy news. They have a lot of fear and worries about their children having a reaction, based on having been through a serious, possibly life-threatening reaction. They have NO desire to ever go through that again.
I also believe that the length of time since the last reaction happened and the severity makes a difference in how much we try to protect our children. For example, after my daughter had a severe reaction to shellfish, I had to give her an EpiPen and call 911. It was pretty traumatic for all of us. I was on “allergy lock-down” for at least 6 months after that, not willing to risk any chance that the same thing could happen again.
After being a part of the food allergy community for so long, advocating for my daughter and watching many of us judge each other and feeling judged by those we are asking to help keep our child safe… here are a few things I’d like you to consider:
We do the best we can with what we have. Dealing with food allergies is overwhelming, and can be physically and emotionally exhausting. It can take months, even years, to learn everything you need to know about managing food allergies. I truly believe that most parents make the best decisions they can at the time for the children. Of course, there are some neglectful, abusive parents out there, so this isn’t all-inclusive. But generally speaking, we want our children to be happy, healthy and safe. And we make the best decisions we can to make that happen.
We are protective of our own. Sometimes parents attack each other in this world, and food allergies are no exception. I’ve seen non-food allergy parents get really upset that their children have to limit what snacks they can bring to class or what kind of food they can bring to lunch (peanut free schools are becoming more popular now). I’ve also seen food allergy parents verbally attack each other out of frustration. Even though I’d personally love to see everyone think about the greater good and safety of all of the children, at the end of the day, I believe most people are out to protect their own first. And therefore, in my opinion, it is up to each parent of children with food allergies to focus as much as they can on what they can personally do to educate and empower their children to take care of themselves, rather than rely on the world around them to take care of them. This may be nearly impossible to do when they are babies, but as soon as those kiddos start walking and talking, we can start teaching them.
It gets easier. Like all challenges in life, managing food allergies does get better. I remember feeling terrified to leave my daughter at pre-school the first few months because I couldn’t shake my fear that something would happen to her (it never did). I was equally nervous about sending her off to Kindergarten. Now we’re finishing up first grade and she has a solid understanding of her food allergies (as much as a seven year old can) and it is very manageable. Yes, we still struggle with going out to eat for the whole family because there are few truly safe places we trust – however, generally speaking, dealing with food allergies today is 200x easier than the first year, second year, even the third year. It gets easier. So if you think a family with food allergies is acting in bizarre ways and you wish they would just relax… try to be supportive and know that they will find it gets much easier the longer they are managing it. But for now, be willing to work with them and help them feel comfortable that their child is safe.
I hope you feel support and encouragement on your family’s food allergy journey. One of the things that has been amazingly helpful for me was finding a local parent group that helps families with food allergies. It’s the Food Allergy Support Group of MN and it’s free to attend monthly seminars to learn more about food allergies and ask parents and experts questions. We also have a few social/fundraising events throughout the year that are great fun! You can find a group near you on the FARE web site. There are many online groups and forums you can join in order to get advice as well, however I’ve seen a lot of attitude on some of the larger groups – most likely because people have less of a filter behind their computer screens than they do in person with people face-to-face, so please use a bit of caution there.
Thanks for sticking with me through this post. Let’s all try to be a bit more patient and kind to each other and offer support and kind words where we can. xo
Images in this post are slides from a speech I gave on food allergies. You can watch a video of the presentation online here. You can find more of my food allergy posts, tips & recipes on my Food Allergy page. I’d also love to connect with you on my Marketing Mama facebook page and twitter. This post, and all posts on this blog, are written from my experiences as a parent of a child with food allergies. I am not a medical expert and encourage you to consult with a doctor on your personal medical situation.
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