How Living With FPIES is like Living With Domestic Violence

How Living With FPIES is like Living With Domestic Violence cradlerockingmama

Please click over and read THIS before you continue to read this post. It will help clarify a lot of what I say in the following analogy. Thank you.

If you are or have been the victim of domestic abuse and violence, this post may upset you.

If you are currently in a domestic violence situation, GET OUT. There are links for help at the bottom of this post. You do NOT have to live like that. Start to believe this: people do care about you!


Last week during a conversation about FPIES and food trials with a friend, I commented that “FPIES is like an abusive husband”.

Later on I thought a bit more about it and realized: I may have hit on something with that analogy.

Now, of course living with FPIES is not the same as living with domestic violence, not at all; but the psychological similarities were shocking to me when I thought about it. For me, the similarities served as a way to convey the emotional stress of living with FPIES to family and friends in a way they might understand. 

Here is a list of four general characteristics of battered woman syndrome:

  1. The woman believes that the violence was or is her fault.

  2. The woman has an inability to place responsibility for the violence elsewhere.

  3. The woman fears for her life and/or her children’s lives.

  4. The woman has an irrational belief that the abuser is omnipresent and omniscient.

Further, a battered woman is described as a woman who has been through two “battering cycles”. A battering cycle has three phases and is defined by the law as:

  1. tension building phase

  2. explosive battering incident

  3. honeymoon phase

How is FPIES like this?

On a daily basis for FPIES families, FPIES is everywhere (point 4). FPIES parents rearrange their lives to accommodate the often bizarre demands of FPIES. We change our habits, our diets, our routines, our “rituals”, our parenting styles.

We avoid play dates, social activities, interactions with people and places that were once meaningful because they are too risky with FPIES.

If we do go out in public, we’re on high alert at all times, knowing that the smallest thing could trigger FPIES (phase 1).

No matter where you go or what you do, FPIES is lurking…just waiting for you to let down your guard and “mess up”, triggering a physical attack on your child (phase 2).

And you do, indeed, fear for your child’s life (point 3). While there are no documented cases of FPIES children dying from the disease (that I know of, anyway), FPIES parents know this disease and understand that an FPIES reaction – left untreated – could potentially lead to death.

I’ve heard many FPIES Mama’s wonder how many cases of SIDS are actually undiagnosed FPIES babies who didn’t vomit and instead went straight to shock in their crib.

Even though FPIES parents know that FPIES is the reason our children are sick, we are the ones who feed our children.

So when we feed them a food that triggers FPIES, we feel guilty. It was OUR fault…WE did that to our child…I made my child sick (point 1).

We know , intellectually, that FPIES is the reason; because we are the parents, though, the people who are supposed to protect our children from everything and anything that could hurt them, we take the blame on ourselves. We internalize the blame and guilt and make ourselves feel worse.

Even more, there’s the nagging wonder many FPIES parents have that they, in fact, gave their child FPIES.

Some wonder if it was their genetics. Others wonder if it was what they ate during pregnancy, or some necessary medicine they took while carrying their child.

FPIES parents will feel guilty for triggering a reaction in their child even if they were following doctors orders! If the doctor insists on a food challenge, or tells the parent to push through symptoms or trial a new food, and that advice leads to an FPIES reaction in the child…well, we may  be upset or even angry at the doctor (especially if they didn’t listen to us) but in the end, we will be most likely to blame ourselves  for making our child sick (point 2).

After all, we’re the ones that put the food on their tray table. 

During food trials, FPIES even operates on a cycle that is strangely similar to the phases of domestic violence: 

  1. Tension building – first ingestion of the food, wait 2 hours (or longer) on pins and needles, watch every tiny action or sign from your child with your stomach in knots until the food trial persists long enough through that tension to prove the food safe OR…
  2. Explosive Incident – profuse vomiting, shock, diarrhea, dehydration, and possible hospitalization, followed by…
  3. Honeymoon period – once recovered from the FPIES reaction, your child will behave perfectly normal and happy and you’ll feel a weight lifted from your shoulders and a lightness in your belly…

until the next food trial begins.

Women (and men) who suffer from domestic violence are often later diagnosed with PTSD (Post Traumatic Stress Disorder)

PTSD shows up in many different symptoms, generally grouped into three categories:

1. Re-experiencing symptoms:

  • Flashbacks
  • Bad dreams
  • Frightening thoughts

2. Avoidance symptoms:

  • Staying away from places, things or events that are reminders of the experience
  • Feeling emotionally numb
  • Feeling strong guilt, depression, or worry
  • Losing interest in activities that were enjoyable in the past
  • Having trouble remembering the dangerous event

3. Hyperarousal symptoms:

  • Being easily startled
  • Feeling tense or “on edge”
  • Having difficulty sleeping, and/or having angry outbursts

I wonder how many FPIES parents would or will be diagnosed with PTSD as time goes on? 

I may be completely wrong about all of this.

These are just some analogies I recognized and was startled enough by that I wanted to share, in case someone else might find this to be a way to explain to any family or friends who downplay your stress levels what life as an FPIES parent sometimes resembles. It might show them that you are, in fact, dealing with a highly stressful situation.

After all, after thinking this through a bit, I’m of the opinion that if we could somehow create a physical, human form of FPIES…we’d be able to have it arrested for abuse.

Or at least get a restraining order against it. 

If you found this post because you are in an abusive relationship, I give you my sincere empathy and love. This post is meant in no way to diminish what you are experiencing or have experienced. This was written purely to express my thoughts about the seriousness of the disease my child (and many of my readers children) live with every day. Comparing FPIES to Domestic Violence is a striking analogy to convey the seriousness of FPIES; we all know how deadly and dangerous Domestic Violence is for its victims.

If you are in an abusive relationship, PLEASE GET OUT. Get help.

In the US: call the National Domestic Violence Hotline at 1-800-799-7233 (SAFE).

UK: call Women’s Aid at 0808 2000 247.

Australia: call 1800RESPECT at 1800 737 732.

Worldwide: visit International Directory of Domestic Violence Agencies for a global list of helplines, shelters, and crisis centers.

Tagged , . Bookmark the permalink.

17 Responses to How Living With FPIES is like Living With Domestic Violence

  1. Marsha Evans says:

    I TOTALLY agree with this analogy… If you have lived it, you know…

  2. Katrina Pelters says:

    Carrie, Its kind of funny (not laugh funny, but cry funny) that you wrote this today. This morning, Nicca decided that her milk tasted funny. I thought maybe it’s the container, so I made her a small amount of new milk, still tastes funny. This is a new batch we just received. We’ve received other orders from this place so that’s not new, its not a new form, etc, same stuff as always. So on the train, begin to have some of the thoughts you explain above.. guilt, sadness, more guilt, oh did I mention the guilt.. I told her to let it sit and see how it tasted at lunch time. So now I’ve sent my 9yo to school with milk she thinks tastes funny. We’ve taught her if it tastes funny to not eat it. This is often her body’s way of saying ‘this is bad for you’.

    So now I am 3(+) hours away from home due to my commute, and I am worried that there is something wrong with the milk/can, etc. I keep telling myself it’s just her cold and her taste buds are acting weird.

    However, I still sit here completely consumed with worry, those crazy thoughts that I’ve just managed to poison my child..

    Anyway, thank you for writing this, especially today!

  3. Cyndi says:

    I am sorry there is no comparison. These are loving children that we are caring for… Loving hurting children, fighting to survive. The love us moms give to them is beyond this world… FPIES is a brutal beast of burden, but not and abuser. Maybe if you learn to embrace FPIES itself it would not feel so victimish? We and our children do not have to be victims to FPIES and I refuse to accept a victim persona in this… I accept a survivor persona and FPIES will not win. <3

  4. bdu says:

    I agree with Cyndi above – My child and I are not victims, and FPIES is not out to get us. It’s a condition we live with and manage, but it does not define us.

  5. Rae says:

    This was an interesting concept, and spelled-out well!

    I hope you’ll delete comments like jessiemae’s without giving any credence to their spiteful, judgmental, trollish babbling. You (and Darrel) are doing fantastic, life-saving, SUPER jobs as parents.

    And by sharing what is learned, both sweet and bitter, with the readers … the boys aren’t the ONLY ones benefitting from your research, persistence, and care!

    Thank you.

  6. TwinMommy76 says:

    I have to agree with Cyndi and Jessie. There really is no comparison. Trauma yes, DV no. I find it fascinating that because someone has a differing opinion it’s “trollish babbling.” I’d check yourself Rae unless you have an FPIES child AND have experienced DV. Dissenting opinions are good things.

  7. Carrie says:

    Thank you, everyone, for sharing your thoughts! As you can tell, I support discussion and differing opinions in the comments. Not all of these comments agree with this analogy, after all, and they are still here.

    What I will not allow on my blog is personal attacks and insults towards me, my husband, or my children. So any comments that cross the line will be removed. Let’s all stay cordial in our disagreements. Thank you!

  8. Jenn says:

    I have lived with both (verbal/emotional abuse) and FPIES and I thought your analogy was spot on. 🙂

  9. Hello i come from France , so sorry if my english is bad.
    I’m 24 years old,young mum and my son has a fpies syndrom,in France we call it SEIPA.
    At the beggining,after 3 hospitalisations of my son. for vomit,dehydration,strong diarrhea. I knew something was wrong with the food ans milk…
    At the hospital , the doctors though i was crazy,they were jocking on me,and saying that i was young and have no experience With children. I was sad,depressive.
    One day after the 5th hospitalisation i met the professor Étienne Bidat,he is the specialist of fpies in France and heard about my story,told me i was couragous and a great mum to discover alone the allergie of my son.
    You’re right living with fpies is violent and horrible and after a crise i always feel guilty. I became maniac at home and outside. I dont see my parents ans familly because they dont trust that the allergie of liam is real…
    Its very hard every day but i feel like a warrior to give courage to my son.
    Good lux koto every Child and parents fighting against fpies…

    • Carrie says:

      Hello! I’m so happy to hear from you. What a story! I’m so sorry the doctors gave you such a hard time. It’s infuriating when they won’t take you seriously. I’m incredibly grateful you found a doctor who believes and is helping you! Good for you, for pushing and being a fabulous advocate for your son!

      I hope your family comes around and starts helping you. Don’t give up! Keep being a warrior for your son! God bless you. 🙂

  10. Aviva says:

    Thank You carrie ,CAN i ask you what your child eats? Cause mine this is a special potatoe milk, carrots,potatoes,apple,pear,zucchini… Thats all. I dont know what i CAN try and affraid to do…
    Thanks for your help

    • Carrie says:

      Hi Aviva! Right at the moment, Zac can only eat my breastmilk on an elimination diet, quinoa, and specially raised pork. We’re temporarily halting a sunflower product trial to get an egg trial out of the way, then we’ll resume sunflower oil in about a month. Zac seems to be a little bit of an extreme case of FPIES, though; I’ve met other FPIES mama’s whose children only have a hand full of triggers and can eat anything else they like.

      What are your sons trigger foods right now?

  11. Hayat says:

    My son triggers are rice,soya,cow milk,oats,carub,gluten,eggs for the moment. Next week i Will try squash…

    • Carrie says:

      Be careful, Aviva. Squash is listed as a top FPIES trigger food. It would be awesome if it is safe for your son, though, so please try it! Just be aware and go slowly. 🙂

  12. Pingback: 2014 Wrap-Up! - Cradle Rocking Mama

Comments are love! Tell me what you're thinking!