Handle With Care: The Grieving Process of a Food Allergy Diagnosis

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I remember my son’s first allergic reaction. I was confused, concerned, and unsure. I’m pretty sure that’s the understatement of the year.

I didn’t understand what was happening – to the point that I called my doctor’s nurse line and said, “Hi, ummm … I think my son might be having an allergic reaction to something he ate; what should I do?”

After that first reaction, we went through the appropriate diagnostic testing. I’ll never forget how I felt after they poked his back 26 times with little medical devices that looked like thumbtacks. And I’ll never forget how I felt when the nurse came in and took one look at his back and said, “Wow! Look at his peanut – I’ll be right back with an EpiPen trainer because you’ll definitely need to carry one from now on.”

She left the room quickly and I blinked, trying to keep the tears from falling. Trying desperately not to let Zachary see how this news hit me. I felt alone. I felt like we had been handed a death sentence. I felt like my son would never be able to live a full life.

I grieved.

The grieving process for a parent whose child has been diagnosed with life threatening food allergies may not seem at all logical for those looking from the outside in. But I can guarantee you, it is real.

Handle With Care The Grieving Process of a Food Allergy Diagnosis

In the midst of learning how to live a full life in spite of severe food allergies, I’ve encountered situations that have shown me how easy it is for us as humans to prescribe a response and a solution to others in their time of need. And I’ve also learned that sometimes prescribing solutions doesn’t allow others to work through the feelings they must feel if they are going to work through the grief and find their way to a healthy, strong place.

For parents receiving a diagnosis of severe food allergies, the grieving process comes in waves. We battle sadness, anger, and anxiety. We feel overwhelmed and paralyzed by it all.

It’s not just about the steep learning curve we face in keeping our child safe at home, at school, at restaurants, and out there – wherever. It’s also that sometimes we feel isolated, and some of us even lose relationships (for the short-term or long) because friends or family members we love and trust don’t fully understand – or don’t try to understand – our “new normal” and why we are so careful.

While we adjust and learn, we are called Helicopter Parents; we are accused of hovering, coddling, catering, spoiling and overprotecting. We are admonished to “loosen up” or to “just feed him a little bit to help him over it.” Instead of understanding and support, we encounter resistance and judgment.

All the while, we are grieving the loss of freedom in a life we anticipated for our child, praying his life is still a long and productive one, and learning how to navigate the ins and outs of our new normal.

What I’ve learned through the years since Zachary’s diagnosis is this: educating myself, surrounding myself with a tribe willing to walk the road with me, and the passage of time all lighten the load and the grief becomes less overwhelming and more an occasional heart-tug.

The grieving process is real, but it’s not forever. Learning to navigate life after a severe food allergy diagnosis is possible. It’s a new road, but it doesn’t have to be ridden with anxiety, and it most definitely does not have to be lonely.

In the midst of it all, I’ve found strength and a desire to learn that I didn’t know I had. I’ve seen how resilient my son is in less than ideal situations, and I’ve had opportunities to use those moments to remind him that understanding how to exhibit both kindness and compassion toward others go a much longer way than knowing long division in third grade.

We’ve found our own way. It took a while, but we did. It’s not always an easy path, but it’s not as overwhelming as it once was.

In the meantime, though, I learned a lot about treating others in hardship and it can be summed up in one small saying: “Handle With Care.” And that’s just what I intend to do with others, every day. Because who knows the difficulty they face?

It’s a little thing, but it makes all the difference in the world to one in need.

Tiffany Self

Tiffany Self is a wife, mom to "Z", and a lover of words. In an ironic twist, she is an English class dropout who now writes for a living. Tiffany is a freelancer in the Chicago suburbs by way of Seattle and Southern Oregon. She writes about her journey of parenting a child with multiple severe food allergies, asthma, and environmental allergies. You can follow her on Twitter or Instagram.

8 Comments to Handle With Care: The Grieving Process of a Food Allergy Diagnosis

  1. My youngest son has a severe cashew allergy, and last month we went in for more testing and found out that he is severely allergic to multiple nuts and also sesame. The way you described your feelings is just right – that’s exactly how I felt after his new diagnosis. And then I was also really questioning myself – like, why am I so sad? I already knew he had food allergies, why am I feeling this way now? But you’re right, it does come in waves. Thanks for this post, it really helped to read someone else describe how I am feeling right now.

    • Tiffany

      Thanks Kelly! I’m sorry to hear you added a food to the list. You’re not alone in the feelings or the work – keep it up, Mama!

  2. Kristin

    I have a Zachary, too. And it’s been six years now since his first anaphylactic reaction, and the waves of grief still find me. I was also on the phone with the nurse’s line, and wound up in the pediatrician’s office for blood work. Unfortunately, it was not protocol to test for tree nuts, and I was told everything was fine. We found out the hard way six months later that it was walnuts. Yes, I am a helicopter parent, but I think I’ve come to terms with that finally. I’m thankful when I read posts like yours because I feel less crazy, less alone. Thank you <3

    • Tiffany

      Oh Kristin! Your neither crazy nor alone! We’re all in this together. Thanks for stopping by <3.

  3. We have been dealing with food allergies for 13 years now. My son was diagnosed with the deadly peanut allergy, plus egg and garlic when he was one. Over the years, he has added many other foods and allergens to his list. I have heard that I should be less controlling; I’ve had family members complain when I’ve asked for temporary accommodations in order for us to visit for holidays; etc. It’s gotten to the point where we just prefer to stay home for holidays because it’s easier; but then I get accused of being anti-social. it’s tough, but I just have to do what’s best for my son and ignore the haters. Just last week, we had another skin prick test where he was pricked 64 times. With two being controls, that’s 62 allergens. We expected a high number of positives, but we were surprised with reactions to 52 of the 62!!! Even with being ready for high numbers, this was more than expected and felt devastating all over again. The allergist’s reaction didn’t help. He recommended more medication and just said that the human body wasn’t designed to be allergic to more than 2-3 foods. I went home and got on the schedule of one of the top allergists in the country. When you add this to the fact that my son is also on the autism spectrum, has asthma, and a few other related diagnoses; it’s very challenging and scary. But what I think makes it worse is the lack of family support. It’s hard not going to family get-togethers, but it’s more important that I keep my son healthy than being concerned about what they think of me. One day at a time…

    • Hang in there, Heather – you’ve totally got this! Even on the days you’re not sure you do. <3

  4. Donna Kulasxa

    Tiffany, it is a great gift to be able to articulate so vividly what others think & feel. As a great grandmother to a severe allergy child, it is often difficult for people in my generation to comprehend all that is involved in these families. Please continue to educate us because often the parenrs are so overwhelmed & discouraged that they lack the time, energy or will to continue to help some of us better understand. It’s to easy (but heartless) for us to say “back in my day” or “just let them get a Little dirty & have a little fun” while, in reality it encopasses EVERY aspect of your life. Again, thank you.

  5. Stephanie

    Aw, another to add to the list of must for the newly diagnosed! I wish I could have read this when my daughter was 7 months old and I was totally bawling about the egg, milk, nuts dx. It’s been a long road, just 6 yrs with so much of the battles you wrote, but then today, out of the blue I was amazed and touched by the empathy of the first graders and their parents, the willingness to do “whatever needed to keep a kid safe attitude” that I so longed to experience. Once in a while the kindness of the uninitiated will floor you. So stay strong!

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