It is very normal to feel grief after you receive a food allergy diagnosis for a child. Grief can hurt profoundly, from the inside out.
It develops in different ways and moves at different speeds. It can embrace you gently, like a long lost friend arriving for a surprise visit. Or it can show up like a childhood bully and land a right hook right where you’re weakest.
Naturally, most of us want to reach out and share our concerns with another human that will validate us and comfort us.
However, grief is sometimes dismissed or treated as a taboo subject by some.
- “It’s not the end of the world.”
- “Stop crying. It won’t do you or anyone else any good.”
- “At least it’s not x, y, and z.”
- “It’ll be fine. It could be worse.”
- “You’re still going on about this? Time to move on.”
- “Why are you so upset? Are you going to be like this every time we get together?”
- “Stop acting like a victim and get busy.”
The message that many food allergy moms get (whether intentional or not) is that we are weak in feeling our emotions. We must just be overprotective, completely crazy, not working hard enough, or working too hard if we experience bouts of intense grief.
Unfortunately, those false statements are sometimes spoken to us by those that we are closest to; our families.
For many, the worst verbal or emotional damage wasn’t perpetrated by a stranger, a “well-meaning” friend, or a random medical professional.
It was done by a spouse, parent, sibling, or extended family member.
Unequivocally, those harsh words and disappointing exchanges can cause deep wounds; wounds that can only be healed by identifying the problem and naming the harm done.
This Is More Common Than You Know
Sadly, Lauren and I hear this sentiment over and over again from those of you that have reached out to share your personal stories. And it breaks our hearts.
It’s sometimes easier to accept the pain of your intense grief when you know it is tied to physical elements outside of your control, but what do you do if you realize that part of the grief you are feeling about food allergies is actually connected to your family relationships?
What do we do with that knowledge? How do we move forward? Furthermore, how do we address it?
First, Let’s Define Grief
If you are new to learning about grief, here is 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
Did you catch that first part? Grief is a reaction to a loss of some kind.
When your child is diagnosed with food allergies, you suddenly are thrust into a life-altering situation that you never thought you’d find yourself in.
You learn that there is no such thing as “mild” or “severe” food allergies. All IgE-diagnosed food allergies have the potential to be life-threatening.
Well, that can feel downright terrifying.
Next, you then have to figure out how to navigate the world of manufacturing, labeling laws, cross-contact concerns, and how to cook safely at home.
You’ve suddenly experienced a great loss. You’ve lost sense of all normalcy that you had before the diagnosis.
The freedom to choose what you eat, where you eat, and how to eat socially – that all changes. Daily habits, preconceived life expectations, your relationship with food, the definition of “safety”, and your peace of mind are attacked on all fronts.
And that’s only the beginning. There is so much more that can encompass loss since no two families are the same.
There Can Be Many Stages of Food Allergy Grief
You’ve probably heard someone talk about the five stages of grief at some point in your life. They are:
The website, PSYCOM, has a great article that gives an in-depth overview of the five stages of grief. Check it out HERE.
Lauren and I also dive into the 5 stages we experienced in our blog post, “Food Allergy Grief Is A Real Thing.”
Common examples of situations that trigger (or re-trigger) one of these 5 stages of grief in relation to food allergies are:
- Birthday parties
- Finding food at the playground
- Your child being left out
- Preparing for daycare or needing to leave your child with someone else
- 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
Conversely, one aspect of food allergy grief that might feel sharper than the examples listed above is the unexpected toll the diagnosis may take on your family relationships and dynamics.
A Sinking Boat
I was close to three years into our food allergy diagnosis for our daughter when my son was also diagnosed with a food allergy.
Devastated doesn’t even begin to cover how I felt.
My day-to-day life felt like a little rickety wooden boat. A boat with holes and cracks in it. Daily, I would frantically move from one crisis to the next, attempting to problem solve the leaks while simultaneously scooping out water to keep from completely going under.
As if I wasn’t already struggling enough, it felt like someone came along and drizzled gasoline over the boat and pulled a blow torch out of their back pocket.
How in the world would I ever keep the ship afloat?
Honestly, I think I cried for days after my second born was confirmed positive for an egg allergy. Were we really adding on a 3rd food allergen to manage? Both my kids were going to live with this disease?
I remember driving home from the allergist after his skin testing and blood work was done. The tears were so thick that I actually had to pull over.
I put on a show for my 10 month old son, volume at full blast, and proceeded to violently choke down sobs in the front seat, desperately trying not to upset him futher.
I Was Desperate
Shame was raging full force in my head and had taken control of my heart. If both my kids had food allergies, it had to be my fault, right?
It wasn’t my fault. But of course, I wasn’t in a place to think calmly or compassionately toward myself at that time.
Due to the chaos I felt within, I eventually called a family member that I thought might be able to give me more information or some advice in how to move forward.
What I ended up receiving was a torrid of questions about what I had eaten during pregnancy, what hormones I might have fed my child, and what medicines had I put inside of their little bodies. Because one of those 3 things must have caused my second born to also develop this disease.
So instead of comfort, I was accused.
Instead of moving forward toward hope for the future, I was asked to look back into my past actions in order to be condemned.
It was a blessing that I was already in counseling during that time. My therapist did an excellent job helping me sift through the grief resurgance that food allergies once again threw my way.
Moreover, she was able to help me identify that part of the reason I felt so much grief was because I felt incredibly isolated in our corner of the food allergy world.
I was surrounded by a huge extended family and tons of close friends. But I didn’t feel like I could rely on just anyone. It felt like I was all alone on my little boat and everyone else was watching me sink into oblivion from the shoreline.
Unmet Expectations About Family
For me, the most painful part of food allergies is that my children have to live with it daily until a cure or treatment is made available eventually.
Secondly, another painful part for me is having to come to terms with the fact that many family members will not meet the expectations I envisioned they would meet.
Realistically, not everyone will respond the way I thought they would or SHOULD respond. An outpouring of love and support from certain individuals will just never come.
What a hard pill that is to swallow.
Instead of acceptance, we were often met with rejection and dismissiveness. Rather than comfort, we continually heard statements of shame or blame. Instead of support, we received harsh arguments or a refusal to even look into our world.
And I realized that I had placed expectations on other people that they would never meet.
An entire lifetime could flash by, and I might not ever receive the emotional and verbal support I desired or desperately thought I needed from my extended family.
And oh, friend.
Sorrow rolled out of me in frigid waves after I realized that I was not going to get my needs met by certain key people in my life. Sadly, that also meant my children and husband probably would not have their needs met either.
Now, don’t get me wrong. We did have SO many people that showed up for us. But it didn’t look like what I thought it would look like. I had expected that everyone would be on board with learning and supporting us.
But some weren’t. Many still are not. And that is okay.
It’s shattering at first. The shock and pain can be overwhelming. It leaves a deep impression, with small individual wounds scattered about. But if we don’t take care of the those wounds and remove the small fragments of debris, then they will become infected and fester.
We cannot force people to support us or react in certain ways. That isn’t fair to them. Conversely though, if they choose not to treat us with respect or support us, then we can choose when and how we move forward without them.
Naming the Hurt
Eventually, I knew I needed to name the things that hurt me. I wanted to identify what expectations for others that I had secretly harbored in my heart that needed to be released.
Hence, I made a list.
These are the expectations that I expected close family and friends to do:
- We would be genuinely validated by our loved ones for what we were going through.
- Our family would listen with open minds and kind hearts to our fears and concerns.
- People would ask how they could learn more about food allergies and what resources they could turn to for more information.
- People would research manufacturing, food label laws, and cross-contact concerns just as much as I was.
- My children would experience their extended family genuinely wanting to accommodate their food needs at gatherings.
- My children would feel welcomed and included in the homes of all our loved ones.
- If I said “no” or asked someone to refrain from something, they would respectfully listen and not make me repeat myself over and over.
- They would reach out and ask how they could keep our children safe at get-togethers and holiday meals without me asking first.
- We would only have to state safety boundaries a few times and people would make authentic efforts to remember and follow them. I would not have to constantly remind them.
- People would be happy to wash their hands before touching our kids and would check food labels THROUGHOULY before offering food.
- Others would not make me feel like a burden when asking for safety accommodations concerning food.
- Everyone would be accepting of me asking questions about food and would be happy to answer me.
- My family and I would not experience harsh words or judgements spoken over us from close relatives.
It Wasn’t All Bad
Some people really did do these things for us, and we will forever be grateful. But it was truly shocking how many people didn’t do the things listed above or were even strangely hostile towards us about food allergies.
It took me a long time to work through each one of these unmet expectations. Each one left searing pain and deep disappointment inside of many wounds that had long gone unattended to.
Thankfully, I am now in a place where I can say that my most painful season of healing has finally subsided.
What about you, sweet momma?
For you own mental health, I would encourage you to examine your own pain and hurts that might be simmering because of how you were treated by others.
Additionally, I would encourage you to reach out to a licensed therapist that could help you in moving forward towards healing.
Remember: We are only sharing our experiences. Lauren and I are not licensed mental healthcare professionals. Please reach out to a licensed therapist if you feel that you are in need of more support. <3
My Final Thoughts on Food Allergy Grief Connected to Extended Family
Grief will always be associated with our close family and friend relationships in some format.
Relationships are hard. Whether it is a partner, our children, parents, extended family, or friends – it’s simply a lot of work.
It takes grace, forgiveness, boundaries, respect, compromise, and purposeful growth. If one of these key components is missing, then having a healthy and safe relationship becomes that much harder.
There will be relationships that change. Others will become stronger and closer. Some relationships will pause for a season and be mended in the future.
And then there are those relationships that you know in your heart might never be truly salvaged. That’s not our fault; we can only do our best and allow the other party to make their own choices.
We cannot expect people to know what we know or anticipate what we need. All we can do is set clear boundaries and ask directly for what we need when we are not getting it.
If people meet us in our need, then that is truly a blessing.
If people choose to not meet us in our need, harm us, dismiss us, humiliate us, or ignore us, then it’s okay to do what you need to do to move forward without them.
That doesn’t mean you never speak to them again or that the relationship is lost. It just means you are moving forward at a different pace than they are. You are not obligated to stop your journey for them or lay down to be trampled by their harm.
Your only obligation is to take care of your needs and your children’s needs first.
Moving Towards the Shoreline
Grief looks different for everyone.
If we imagine ourselves each being in our own little boat, what does it look like to finally reach the shoreline? How can we get to that place where we feel safe and loved?
No matter how it happens, I’m convinced that all that matters is that you move forward.
Maybe you need to lie down and cry for awhile. That’s okay. Perhaps all you can do right now is crawl to the side of the boat inch by inch. Go ahead and do that, beloved.
Someday you’ll feel a bit more rested and you’ll rise to your knees, preparing yourself for the journey ahead.
Eventually, you’ll regain enough strength to start rowing with both of your beautiful hands. Your body and soul will become stronger with every forward motion.
And we will be waiting for you, cheering you on with every fiber of our being.