Food Allergy PTSD

Parents of kids with food allergies tend to have a form of PTSD. It’s a commonality that ties us together. We get it. We know when we’ve run into another parent who understands us. Most parents empathize, but only we can truly understand.

At least that’s how we feel.

Food allergy PTSD leads to a lifetime of sensing threats around corners, threats both real and imagined. We have intimate knowledge. We have the knowledge you can only get when you are holding your baby and running for help while he is dying in your arms. The one job we are tasked with above all others, to keep this child alive until he can do so on his own, is slipping away and every second counts and you know, KNOW that were this a hundred years ago you’d be burying your baby. Having survived it you are changed. Broken. You are facing a changed landscape and a changed job. It’s unfair but it’s pointless to dwell on it.

I remember thinking terrible things about the parents of young kids at Target or Wegman’s or any of the other places one finds themselves mixing with young families before having kids of one’s own. I remember thinking, ‘Wow. How can they talk to their kid like that? It’s just mean. I’ll never be like those people.’ I remember thinking of friends that had a kid, ‘I’m tired. I’m always tired. Who are these people that think they’ve cornered the market on tired.’ These were reasonable thoughts to have. I had no freakin clue what the hell I was talking about. Having no clue was my perspective. Still is in many areas of life, to be honest. The fact that it was completely uninformed and laughably ignorant doesn’t invalidate that perspective.

The only thing that could revoke the validity of my perspective was having kids. Since then I have caught myself scaring my three year old into compliance during a short trip to Target. I like to think that my terrifying, clenched-jaw frustration was less upsetting to the ecosystem of the store than the screeching of others. Of the parent of three trying to get the grocery shopping done without a full meltdown, but to anyone that saw me around a corner, grasping the scared little boy’s biceps and staring him in the eye with the insane focus of a cartoon villain I’m certain mine would be the one more deserving of a call to CPS. Dad scary can be truly scary. I remember this from my dad, who I knew all along was the most gentle and loving and thoughtful father the world has ever seen. But toddlers require different. My mother once caught me at 5 or so playing with matches inside a camper and when she told me ‘Just wait til your father gets home.’ I knew enough to be terrified. Since it is required to scare kids early on to make the point, we change. We have to. And when we do we feel shame around other parents who might be having a good day while I’m staring at my little boy and doing my best impersonation of DeNiro in Cape Fear.

When it comes to other people and our kids food allergies it’s insane to think they can have our intimate knowledge even after they’ve heard our harrowing tale. Only we have that. That’s why we are each other’s best support. We can speak shorthand. We can elaborate on our stories, on our near misses with one another and know that we are understood. Regardless of how compassionate, empathic, caring and sensitive we are, for most of us, we’d be lying if we said that we didn’t change when it happened to us.
For many of us there’s residual shell shock and we find ourselves frantically unloading on kindly people that will listen and simply increasing our volume because why shouldn’t everyone share my perspective and this fight. At least all parents. My god, your hummus and carrots are a literal loaded gun free to be played with in any room where my little boy is. Don’t you get that? Is hummus really that important to you? ARGH!! You’re awful!!

Intimate knowledge can be like that. It can seem so true to you, so elemental that you forget there was a time before you had acquired that knowledge. Acquiring it leaves you changed. When I became a dad I was surprised by a few things. Certainly the amount of time there is in 24 hours. I thought I had that concept down, but I was way off. I was surprised by how aware of my own mortality I became. That’s how the responsibility hit me I suppose, that and the love. Also, I was surprised by the instant sense of connection and empathy I felt for parents everywhere. We can get as modern as we want but the primal nature of holding your newborn baby, however he or she got to your arms, is universal. Nothing was the same ever again. Almost immediately I was sliding away from my former perspective and a new life was stretching out before me. As it unraveled it revealed understandings of my life and its meaning. Now that I was here, on this side with the other folks that had had this beautiful and magic epiphany, I knew it was where I wanted to be. I proceeded on this path and began to find less and less in common with the people who hadn’t had kids. I was fully a parent.

Then I was born into a smaller family of parents. The rare club that was more exclusive and less desirable. I became a food allergy PTSD dad. I became a husband that had to relearn how to relate to his family and the world with this terrible new knowledge. Our son had an anaphylactic reaction to a single bite of a sandwich with a small amount of dressing on it that contained a small amount of sesame and it nearly killed him. It would have had a seed fallen to the floor from our bagels or our Chinese food that we had eaten regularly that first year and he had gotten to it while we were in the other room. Its traumatic information to live with. As hard a time as I had relating to parents before having kids, and as hard as it became to relate to people without kids after having them, it is now equally hard to relate to parents that don’t worry about their kid’s immediate environment every minute of every day. I just don’t get them. I can’t. What’s worse now, I somehow feel like they should all be able to relate to me. The childless, the parents of kids without life threatening food allergies, everyone needs to be in this thing with me. Right?

It’s easy and understandable to lose perspective. Sometimes it’s even advisable. And since it’s our kid’s lives I’m all for erring on the side of crazy if there’s any question of safety. But from time to time we have to poke our heads out of the bubble and remember that it’s a great big scary world out there for a lot of people. For a lot of reasons.

In my son’s classroom, where they will see me and confront me and Charlie every day, I may need to ramp up the nutty. Perhaps it will cause that extra attention when it’s called for, which it may never be, to save my son’s life. But if I want my message to be heard by the people that don’t have reason to understand my plight intimately, it’s my job to learn what invisible realities they are facing and try to share in those struggles. To not be so blinded by the dangers of the world as to forget that others have children suffering even worse, more assured tragedies. That while there are loaded guns ready to end my child, there are others whose children have bullets headed there way. That there are many parents in the exact same situation as me that couldn’t stop the grip of the unknown entity that ruined their lives forever. That it is a great gift I’ve been given to be able to know for sure what I need to do to assure my child safe passage and that I shouldn’t ever take for granted how lucky I am. That if I want empathy and understanding I have to remember that the world is full of parents facing innumerable struggles, challenges and threats and it’s my responsibility to support others and seek out ways to help, just as I ask them to do for me. Compassion is not a finite resource, it is infinite and needs to be fed constantly in order for it to grow.

Sometimes the PTSD and the eminent dangers make me rude. Make me insufferable even. Sometimes I’ll need others to forgive me for that. Sometimes I have to forgive myself for that. Sometimes I have to learn from it.

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2 thoughts on “Food Allergy PTSD

  1. Life With Teens and Other Wild Things

    I live with PTSD. It means you’re constantly in high-alert mode. 24/7 survival. The threat is always there, even when it’s not. It colors everything.

    I think it’s fair to say that families who deal with severe allergies can develop real PTSD, especially following a traumatic episode. Nightmares, paranoia, anxiety, depression, anger… All of those things go along with knowing that a threat exists to your child.

    (hugs) Papa. I can’t understand food allergies on the level you live with. For me, an allergy means latex gives me a red, itchy, bumpy rash. Not a frantic trip to the ER fighting a closing throat. I can’t understand how it feels to be that close to losing a child, and I pray I never do.

    I can understand your day to day. The fear. The hyper awareness. You have my sympathy. It sucks.

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    1. joejmedler Post author

      Thank you so much for your thoughtfulness, your empathy and your compassion. Its hard, but you lnow that. Thankfully im still able to be grateful for the multitude of wonderfulness that has come with it. Grattitude when things are good make it worth enduring the reat for me. I’m sorry to hear about your challenges and will be sending you hugs and compassion from a distance! Thank you for your caring!

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