Food Allergy Grief is a Real Thing

Give sorrow words. The grief that does not speak whispers the o’re-fraught heart, and bids it break. 

– William Shakespeare

Unlike the wise words of Shakespeare, I’m a master suppressor of emotions. I don’t usually use words to express my sorrow.

Instead, I suffocate them.

If anything feels uncomfortable, I bury it deep down inside of myself and keep moving forward like nothing is wrong. In the past, if I felt sad, I’d do my best to dismiss it or find a way to gain “control” over it.

My internal abuser (I’ve unaffectionately named her Kathrine) would say things like:

“Suck it up, buttercup.”

“Other people deal with worse.”

“You must be too sensitive, so stop feeling anything.”

That’s how I coped with loss, pain, and difficult situations or people. And that strategy would have totally kept working for me, except for one tiny problem.

My body is not an infinite vacuum of space. All the feelings and emotions that I buried alive eventually came crawling back out of the temporary graves I prepared for them.

One by one, they exhumed themselves and crept back into my life, each one bearing an unwelcome memory. Sometimes they would present as nightmares, other times as uncontrollable sobbing episodes.

But, more often than not, they’d manifest when I was triggered or irritated about something that happened to me or was said to me. Before I knew it, I would suddenly be overcome with an emotional explosion. It wasn’t healthy for me, or for the people in my life.

My Breaking Point

Around Christmas time of 2020, I had some pretty significant interactions with extended family. It definitely wasn’t anything new on the family drama front, but it literally broke me down from the inside out.

To family, they were just doing and saying what they normally did. Their behavior and words hadn’t changed, but during that particular time, something major shifted inside of me. I felt completely broken by interactions that really were not out of the “norm” for me to experience.

My typical coping mechanisms and emotional mental escape routes stopped working. Nothing helped to sooth the raging torrent of thoughts and feelings. One minute I was fine, and the next I was violently nauseous. I was constantly irritated, anxious, upset, and emotional.

I would cry for hours or have terrible anxiety attacks that left me struggling to breathe while clutching my chest as it tightened.

At first, I thought I was just really stressed. I had a 3-year-old daughter with severe food allergies and I had just given birth to our second child. I assumed it was a trifecta of food anxiety, postpartum, and demanding family members.

Later, with help from an amazing therapist, I came to realize that the mass grave of emotions I had buried inside myself was finally at capacity. There was no longer any empty space in my physical, emotional, mental, and spiritual being.

My body had had enough. It was just done.

The only option I had left was to start sifting through the emotional mess I desperately didn’t want to address.

Grief Can Be Hidden

When I first started therapy, I really thought I just needed better stress management skills to work on my anxiety concerning my child’s food allergies.

On top of that, I also wanted conflict resolution strategies to deal with the difficult people in my life, especially when I was confronted with their opinions on how to deal with my children’s medical issues or my parenting capabilities.

So I started meeting with a counselor once a week and we slowly started peeling the layers back. I opened up to her about my family dynamics and the stress I felt about food allergies.

Additionally, I also knew that I had a lot of anger concerning my daughter’s allergies. I hated that she would have to deal with managing life and death experiences her entire life.

Imagine my shock, when a few months into therapy, my counselor tells me the following:

“Katie, I think you are doing a great job. You’re a good mom and you have a lot on your plate.

We’ve processed through a lot of your anger in these different situations, but now I think it is time we address what is hidden behind the anger. Are you ready to talk about your grief?”

I was dumbfounded. Say what?! Grief?

To me, grief was an emotion you only felt with the death of a loved one. How could I be feeling grief when there was no loss of life?

A Clinical Definition

When I realized that my therapist was probably right, I felt exposed. Vulnerable. I thought I knew myself so well.

Was I really grieving? And if so, what was I grieving about? Frustrated, I dug deeper into what grieving actually meant.

Here’s a clear definition of grief from MedicineNet:

The normal process of reacting to a loss. The loss may be physical (such as a death), social (such as divorce), or occupational (such as a job). Emotional reactions of grief can include anger, guilt, anxiety, sadness, and despair. Physical reactions of grief can include sleeping problems, changes in appetite, physical problems, or illness.

-MedicineNet

That definition pretty much summed up all of the “symptoms” that I was experiencing day-in-and-day-out.

My grief was practically screaming to be acknowledged and validated. It so badly needed an escape from my body that it was PHYSICALLY forcing its way out.

So instead of continuing to run from it, or bury it, I started to gently embrace it. Despite all the fear I had in confronting my emotions, I recognized I needed to reimagine the “face” of my grief.

In the past, pain and sadness seemed like a dark, salivating monster just waiting to pounce and consume me.

But this time, I starting replacing that negative mental picture with an image of my own face. My face as a child, then my face as a mother. A wife. An educator and a good woman.

My grief became something understandable and worthy of attention. It was, after all, a significant and undeniably beautiful part of what makes me myself.

The 5 Stages of Grief

You’ve probably heard someone talk about the five stages of grief at some point in your life. They are:

  1. Denial
  2. Anger
  3. Bargaining
  4. Depression
  5. Acceptance

The website, PSYCOM, has a great article the gives an in-depth overview of the five stages of grief. Check it out HERE.

My Experience with Food Allergy Grief

I’ve learned a lot about these different stages of grief and how one might hit me when I least expect it. Furthermore, the stages of grief do not happen in any particular order, nor do people experience every single one.

For example, my grief typically presents itself as anger or denial. Occasionally, I experience deep seasons of depression, but it’s not constant. I hardly ever experience the bargaining stage, but I do eventually find myself in the stage of acceptance once I’ve processed through a triggering event.

When my daughter was first diagnosed, I was totally freaked out and overwhelmed. After a few months of adjusting to our new normal, I stopped wanting to talk about what we were going through with others.

There was even a point where I stopped reading information about food allergies because I just couldn’t handle any more information. I was in denial.

It was almost as if the food allergy didn’t exist as long as I managed it “correctly” and could keep it hidden and out of sight. I didn’t want our lives to change and I didn’t want anything to happen to my child. It was my body’s way of coping with the new reality of what we were living.

Grief Is Not A Linear Process

I also came to the understanding that these 5 stages of grief could resurface at any time, for any unprocessed pain, or after new traumatic events.

Often, we think of grief as a linear process to walk through. First we do stage 1, then stage 2, then stage 3.

That is not how it works.

Instead of a line, think of the grieving process as a spiral with the diagnosis at the center. As time goes on, the sprial begins to wind out until you get to the first dot.

This represents the first time you’re triggered after the diagnosis. For Lauren, this was the first time she went grocery shopping after her son’s diagnosis and she felt completely overwhelmed.

More time goes on, the line continues to curve, you start to regain your footing, and then another event happens.

Certain events can reopen your feelings of grief. They could be things like:

  • Birthday parties
  • Finding food at the playground
  • Your child being left out
  • Preparing for daycare or needing to leave your child with someone else
  • Family gatherings
  • Holidays
  • New allergies
  • Continued introduction of new foods
  • Allergy appointments
  • Bloodwork results
  • Seeing others post things about food (going to ice cream shops & bakeries)
  • And so many more

Spiral Diagram

Each of these events can have an emotional impact. As time goes on and you get farther away from the center of the spiral (the initial diagnosis), the impact is still present, however it may feel less crushing than it did in the beginning.

If you’re wondering why you were crying when you saw someone at an ice cream shop with their kids, this is likely why. The fact that the diagnosis may have been years ago doesn’t change the fact that it still hurts. It may be less intense, but it’s still there.

It’s a process. It takes time. And it may never fully be gone. But it does change. It does begin to feel different.

Confidence builds. You will see your child thriving in so many ways. The pain lessens.

Just a loving reminder: I am not a licensed doctor or therapist. I’m sharing my experience of what I have learned. I don’t profess to have any specialized training. If you think you are struggling with grief, give yourself permission to reach out to a licensed counselor that could assist you in your healing journey. <3

Examples of Food Allergy Grief

Through this journey of getting to know myself and understanding what causes me to feel grief, I’ve identified multiple situations that trigger sorrow.

Perhaps you have similar triggers, or maybe not. Everyone experiences, feels, and reacts to grief differently. Lauren and I have discussed grief in relation to managing food allergies many times.

Here are situations that we’ve identified as having caused us sorrow:

  • having to set food allergy safety boundaries with friends and family
  • recognizing that I permitted poor emotional/physical boundaries with family and suffered the consequences
  • feeling isolated and misunderstood by other people when navigating food allergies
  • feeling jealous of other moms on social media when we see them taking their children out to eat or to an ice cream shop and we know we cannot have that experience with our children
  • missing the presence of experiences/things we had before food allergies came into our lives
  • desiring “normalcy” for your child because you want your child to be like the other kids and not be singled out
  • watching your child be left out and possibly excluded
  • navigating food allergy bullying
  • creating new daily life habits for safety reasons (constant label reading/cooking more/calling companies/hand washing/etc.)
  • feeling overwhelming guilt when we forget a safety step in managing our children’s allergies
  • visually seeing our children’s allergen out somewhere that we least expected and then feeling blindsided with fear
  • aversion to social gatherings because we are afraid our children will come into contact with their allergen
  • navigating the medical trauma of watching your child react to their allergen
  • feeling judged for being a “helicopter mom” when you’re just trying to keep your child alive
  • managing people’s rude comments about food allergies (intentional or not)
Can you relate to any of these?

These are all situations that caused deep emotional responses in me, and most of the time I tried ignoring them.

Honestly, I didn’t want to recognize that I was in pain or have to actively feel it. Consequently, I ended up paying a steep physical and emotional price once it all caught up to me.

I now do my best to give myself more grace. There is no weakness in feeling an emotion and there is no shame in me working through my thoughts and reactions.

Make Small Changes to Address Grief

I’m not an expert by any means, but there are multiple things that I now do often in order to better take care of myself, and my heart.

With the assistance of my counselor, I’ve started making small changes in my life that have been life giving. Things such as:

  • finding time alone in the day to reflect on events and myself
  • identifying people in my life that do not uplift or support our family needs/decisions
  • creating better boundaries with toxic people and maintaining those boundaries for my own peace
  • recognizing my own unhealthy behavior or thought patterns that need to be addressed
  • “romancing” myself to build self-love and acceptance (a random shopping trip, treating myself to a pedicure, getting my hair done, taking myself out to a movie, soaking in the tub with a cheesy K-drama, etc)
  • investing in friendships and relationships that bring support and are life-giving
  • giving myself permission to feel things and actively choosing not to shame myself
  • normalizing telling people “no” and not explaining myself (because a mom should never have to explain her reason, especially a food allergy mom)

In summary, all of these small steps have taken me over a year to implement on a regular basis. It’s taken just as long for me to accept that it’s okay to take care of myself and not constantly cater to other people’s needs.

It’s Okay to Ask for Help

It really is okay, sweet friend. It is okay for you to not be in a good place right now. It’s not your fault.

I don’t want you to beat yourself up or shame yourself for feeling something that you are entitled to feel. But I also don’t want to see you continue to struggle alone in your pain. There is no shame in reaching out for professional help.

If you are ready, a licensed counselor might be the next best step for you or your family.

Food Allergy Counselor is a wonderful resource. These are counselors who specialize in working with families experiencing food allergies and all the emotions associated with major life changes. Check them out here.

If finances are a barrier for you to access counseling, maybe consider a few of these options:  

  • using your HSA or FSA card to pay for counseling
  • your health insurance might actually cover the cost
  • EAP (Employee Assistance Programs) might offer free or affordable counseling – reach out to your Human Resource Department
  • some counseling offices offer a rate on a sliding scale based on your income (ask about this when you call)

We care about you.

Lauren and I started this blog in order to comfort and validate other food allergy families. We are not hiking your exact journey, but we are all climbing the same mountain. The knowledge of how difficult it can be is not lost on us.

It is going to look and feel different for every person. But it doesn’t change the fact that your experience is valid and worthy of recognition. Reach out for support.

Keep pressing on, beloved. Just remember that it is okay to stop for a bit and gently embrace any inner grief that needs your attention for healing. <3

-Katie & Lauren

What to Read Next: The Food Allergy is Not Your Fault, Momma

8 responses to “Food Allergy Grief is a Real Thing”

  1. Thank you for this. In so many ways I cannot articulate.

    1. We’re so glad it’s helpful. Thank you so much for reading <3

  2. So glad I found your site! I can resonate with so many of your feelings! 2.5 year old son with food allergies and I am overwhelmed at times by it all!

    1. We’re so glad you’re here! I definitely feel that way sometimes too. It’s been such an encouragement to get to connect with other food allergy moms. Thanks for being here <3

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