Every single school year, without fail, I meet at least one other parent of a food allergic child who does NOT carry epinephrine and/or who has NOT had their child diagnosed by a board certified allergist. They give me the same statement over and over, “oh, my son does not like peanut and knows how to avoid it” or “he’s not all that allergic”. At that moment, I pause while an entire scene plays out in my head: I envision myself explaining anaphylaxis with the parent tearfully hugging me as she thanks me for potentially saving her child’s life. Then the reality of what will occur pops into my head: the parent looking at me as I grew a second head and am some sort of over protective freak. My food allergy moral dilemma remains. How does one educate the un-educated or the person lives in denial? Or…is it my business to butt in and attempt to tell this person how to take care of their child’s life threatening food allergy?
Note: top image is courtesy of Tiffany at Food Allergy Fun!
In my spirit to educate, advocate and save lives, am I crossing the line of not honoring someone’s privacy? It seems more often than not, that these parents have access to good medical care, they are floating in some sort of state of denial and lack of information. Even my family visits the land of denial from time to time. I feel that it might be easier to live believing that a teeny tiny sesame can not kill. The truth of the matter is, that those who aren’t prepared for an emergency are the ones at the center of a tragedy. My heart breaks when I read stories of a sobbing parent saying, “I didn’t know…”.
I usually end up suggesting a visit to a board certified allergist to confirm a diagnosis and a plan. I explain that the board certification and specialty is important since this type of doctor works with anaphylaxis daily and is usually able to give accurate up-to-date information. After I make my statement I walk away knowing that parent will now avoid me at all costs. This happens year after year, so I have a handful of parents who run when they see me. In an odd way, this makes me feel better since I know they paid attention to my comments and could that uncomfortable energy be a sign of listening?
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One of the hardest things I find about managing both life threatening food allergies and asthma is talking to others. I hate to be the one that might be perceived as demanding, pushing or for asking too much. What I now know, fourteen years later, is that honest, clear information presented with kindness works!..
I am in a place where, since I am not a food allergy parent but I have faced food allergies, that I can share, but sometimes the parents look at me like, “What do you know?” I can tell them my story. I can tell them about living with my brother’s food allergies, about watching my dad struggle with chronic hives (though now they have determined that they are not linked to a food allergy but rather a hormone thing) and about watching a little girl under 2 years old going from no food allergies to severe allergy overnight and watching her swell up like a balloon and the parent being clueless as to what was happening. I act the way I do because I’ve SEEN what happens when you are not prepared, and even some times when you are. I’ve SEEN it, I’ve LIVED it in a way, and that gives me a perspective that not all have.
People think that a 15 or even 5 minute drive to the hospital is close enough to warrant not carrying an EpiPen. They think that the Benedryl will stop it. They think that it won’t happen to them…Until it does. It’s no different than a house fire in that sense.
I prefer to be prepared, but that’s because I’ve seen how disaster can strike in a moment and I’m a preparer. If you aren’t that way, well, then you don’t plan for the worst and hope for the best, you expect the best and deny the worst. It is the way of life…and it really needs to change, in my opinion.
Also, denial is the safe way to not have to face your fears, and I think that is the main reason people don’t carry an EpiPen or get more education. It’s like that episode of Bugs Bunny where Elmer Fudd can walk on air until Bugs hands him a book on gravity, and then he falls. They think if they don’t know about it, it won’t happen to them. So far from the truth, but still the main line of thought, if people will be honest. So sad! Literally!
Excellent post, Caroline, and I am so with you on all levels!
Julie,
I love your example using Elmer Fudd and Bugs Bunny–that is the problem exactly. I was once told, by school staff–that they would simply make a child comfortable while they wait for the ambulance. I then asked them how exactly do you make someone who is dying comfortable. The conversation ended promptly. Okay, maybe that is why folks run from me?! Thankfully, our school district stepped it up and dealt with staff using out dated thinking! Thanks for contributing Julie!
That scares me, Caroline, about the school staff, and I’m so glad that things are beginning to change! I try to be tactful, but sometimes, you just gotta lay it all out, ya know? I hope that eventually people will realize that denial is a river in Egypt (forgive the pun) and has NO place in our thinking when it comes to allergies.
Amen Julie! I was very upset with the staff, but thankfully, I spoke to someone above the staff two levels, who quickly resolved their approach.
Amen Sister! Could not have summed up my experience any better!! I have more then a handful of parents who avoid me! It breaks my heart! I would add the parents who are medically adverse and take their anaphylactic child to the zen practitioner who does energy testing and validates a gentle avoidance of the allergen. Their denial has now been “medically sanctioned”. There is no where for me to begin to educate them in any way and I am seen as a bigger freak. Sob!
Oh Grace! You nailed it on those situations. There is no possible way to educate when that happens from a zen practitioner or even a Western medically trained MD! I’ve seen pediatricians tell a patient it’s mild, you really don’t need to carry epinephrine and then parents dig in their heels when they see an allergist so says, no–you need to carry. I think education of physicians is needed too!
I tell them that they are idiots and bad parents. No, I’m kidding of course. That’s all in my head. Kidding again…….. In reality, I tell those people that I used to be that person too. Before my child was diagnosed with life threatening food allergies. I used to think that allergies weren’t that bad. But then I tell them that had to watch as my son’s skin turned yellow and his eyes rolled to the back of his head because he ate a few bites of a piece of bread that was toasted on a pan that had PREVIOUSLY had butter on it. I tell them about how I had to shoot him with an epi pen and rush him to the ER. I tell him how his veins had collapsed and how after an hour of trying, the ER doctors could not administer an IV. I tell them how this wasn’t his first reaction to eating dairy. The first time, he threw up. The second time he went listless and then threw up. I tell them that the first reaction is rarely a serious reaction. I have to get graphic with these people, because their denial is dangerous.
Marla,
Thank you for sharing! Your story is incredible and scary. Thank goodness you were prepared. Your experience is very powerful since your child’s first reaction was fairly mild. You truly are the perfect example for why seeing an allergist and being prepared is a critical requirement–not optional.
I recently met a family from our elementary school who has a peanut allergic son. They did not have an epi-pen and seeing an allergist was on a to-do list, but nowhere near the top. The kicker? One of the parents was a cardiologist at a large hospital. Goes to show it doesn’t matter who it is, we can all share our experiences and help educate others. Thanks for reminding us to get over the fear and discomfort, and just say it!
Heather–good to hear from you! Isn’t there an old saying about the cobbler’s child has no shoes? I think that might be the case with your experience!
This is also something I struggle with. Sometimes I wonder whether a short elevator pitch might have more impact than explaining. Perhaps something like “Hmm.. you might want to check in with a board certified allergist because there are new guidelines for managing food allergies that a lot of folks don’t know about.” Or ” that’s kinda like driving around without seatbelts on. Maybe think about checking in with a board certified allergist..” Then smile, and walk away.
I watched with total disbelief when a local advocate who lost a child to food allergies was telling their story to a mom whose 2 year old son had a “mild” peanut allergy. The mom didn’t bat an eyelid – you could see she wasn’t really taking the time to think about whether it could really happen to their family. This really hit home how hard educating people is.
Ultimately, as people’s awareness grows, things will change. Hopefully it won’t take losing more people unnecessarily before that happens.
p.s. I really did find it very funny when you said people were avoiding you 😀 I can totally see that happening to a food allergy educator!
Connie,
Thanks for adding to the conversation. I do like the elevator pitch idea. Actually, I really like your pointing of mentioning new guidelines. That is a good lead in for the person whose child had a mild reaction years previously. I was concerned to hear about the person speaking to someone living with tragedy and not batting an eye. Let’s all hope that we don’t need any further tragedies!
Connie, Regarding the avoiding–I used to think it was just my personality–now I have another level of why folks run!
I have had many of these conversations with new friends who are poorly educated about food allergies. I had the benefit of friendship first before realizing how much they needed help to be more informed and equipped to handle life with food allergies. I have not tried to approach these topics with acquaintances yet, but I think the elevator pitch suggestion above is perfect for that!
Hi Dee,
Agreed, I think the elevator speech is a good one to have on hand. I am guessing your friends are truly good friends since they did not push back or question you. They are golden!