An extremely important topic related to food allergies is trauma. The more families I meet, the more I am convinced trauma plays a big part in the daily lives of people in our community and not only for the food allergic person, but for the caregivers, the siblings, and the extended family, as well. As a food allergy mom and clinician myself, I firmly believe that healing from food allergy trauma after anaphylaxis is different than managing typical anxiety. Moreover, food allergy trauma, is unique in many ways, from other trauma, while many clinicians are simply not trained to recognize or treat it at all. It is important to frame the aftermath of anaphylaxis through the lens of trauma, as it will inform how clinicians approach it and how we as families work toward recovery.
What is trauma? It is when one experiences something so terrifying and possibly life threatening that it is overwhelming, such as watching your child nearly die from anaphylaxis. Judy Herman in her landmark book Trauma and Recovery writes, “Traumatic events overwhelm the ordinary systems of care that give people a sense of control, connection, and meaning” (1992, 1997). Trauma can change the brain and cause a variety of symptoms, impacting our everyday lives. For many people who have experienced trauma, it is something they relive, repeatedly, unconsciously or consciously. According to leading expert, Bessel Van der Kolk, “Trauma is not the story of something that happened back then….It's the current imprint of that pain, horror, and fear living inside people.” (In Terror’s Grip: Healing the Ravages of Trauma 2002). And unlike other traumas, food allergies are a continuous threat, that can never truly be “in the past”. We must live with this fear, knowing it can happen again with a simple mistake, while others around us may be completely oblivious to this threat.
How trauma can change us: For many people who experience trauma, you may go on to have nightmares and flashbacks of the event. You may experience extreme fear around triggers of the event, outburst of anger and emotional dysregulation can occur. You may go to great lengths to avoid the trigger or reminders of the event. Your body may experience fight, flight or freeze responses when triggered, you may feel hypervigilant or “on edge” often, and you may reexperience the emotions you felt at the time. Parts of your brain needed for reasoning, planning, and normal functioning may not be accessible to you when you are triggered. These symptoms are involuntary, one may not even be fully aware of them. This may make advocating very difficult, emotional or draining. It may make responding during a potentially dangerous situation challenging. It may make it difficult to gage the level of threat in a present situation. This is NOT the traumatized person’s fault. It is a constellation of symptoms as a result of a traumatic event.
Helpful guidelines to healing from food allergy trauma:
Validation and psychoeducation: We know that acknowledging that the danger is REAL is very important. This is the idea behind the “Believe Survivors” campaign. It is essential that we work to acknowledge that the threat is REAL. Your child lives in a world that is dangerous for them. You have experienced the worst situation in regards to food allergies and that is rightfully terrifying! And, yes, it is possible it can happen again with a simple mistake! Unlike normal anxiety, the threat is real and nearly omnipresent. This is a VERY hard thing to have to cope with every day, but when we acknowledge it, we can better manage it. Have compassion for yourself and for others in your community. Your feelings are valid. But know, your body and mind may be responding in the aftermath in a way because you may be traumatized. You can feel better.
Establishing safety as best you can. It is VERY important to have a plan for safety in the aftermath of trauma WITH choices. Feeling helpless is a BIG piece of the destabilization of trauma and having choices helps to combat the feeling of helplessness, both Judy Herman and Bessel Van Der Kolk discuss this at length. How can we do that with food allergy families? 1. Having an emergency action plan from your allergist with access to at least two epinephrine autoinjectors is key. 2. Identify a short list of simple and safe foods. You may want a referral to a trained nutritionist or support group that will discuss safe food options 3. Perhaps the family takes a step back from activities or eating out for a while. This is a NORMAL response to a traumatic event. Slowing things down, cancelling things, or sitting out of higher risk events temporarily is OKAY, when you are establishing safety.
Look for cognitive distortions and challenge them: Feelings are valid, but thoughts are often not. Cognitive distortions are common during and after a traumatic event. This means, our brain creates an interpretation or an assumption, that may not be true and may be causing more feelings of distress and keeping us from healing. For example: “I am a horrible mother because I made a mistake.” “My child can never try new foods again.” “The event was completely my fault.” “I can’t ever go to any event ever again, because this will happen every time.” These are cognitive distortions, and these thoughts, cause feelings that contribute to hopelessness and disconnection and behaviors that may be maladaptive, rather than helpful. Every time you have these thoughts, ask yourself to weigh the evidence for and against these thoughts to check if they are based on reality.
Healing your mind/body: It is very important to help the nervous system calm and heal after a traumatic event. It is normal to avoid reminders of the trauma. (You may not want to see a word, a symbol, a sign, that reminds you of what happened. You are not being “crazy”. This is a normal response to trauma.) Learning ways to physically calm your system will be important. Yoga, deep belly breathing, grounding, repeating a word or phrase to yourself (We are safe), progressive muscle relaxation, squeezing a stress ball, exercise, meditation, psychotherapy, journaling, are all ways to help calm your body and combat the “flight, fight or freeze response”. If you feel you need a medication, see your doctor and discuss your symptoms.
Finding Connection. Judy Herman (1992) discusses at length how trauma can cause a person to be more isolated, especially if they are not believed or validated. She goes on to discuss how connection is a path toward healing trauma. Finding a group of supportive people who will understand your experience and validate you, is key, in my opinion. This is the idea behind support groups, many are online, but you may find some in your community, as well.
Exposure: Reintroduce yourself to life when feeling ready: It is important to not let the trauma make you retreat to a world where you basically live under a rock indefinitely. You will likely pull back immediately after the traumatic event, which is normal while establishing safety. However, as time moves on, and you get the support you and your family needs, it is important to take steps slowly to participate in life again. You may need to alter how you do this, based on your experience, but taking small steps toward living a normal life is very important. Calculating reasonable risk, with plans and choices for unforeseen situations can help, and bring your emergency medications. After my child’s anaphylaxis, we decided to go back to restaurants but bring her food everywhere. This helped us take a step toward a normal life, while maintaining our safety.
Giving back. I’m a big believer that using your experience to work toward a cause can be very healing, once you are ready. I put this as the last step, because I think it is important that you have done the other steps first before attempting this, or it could be destabilizing. Whether it’s advocating for a law, reaching out to a newly diagnosed person, starting a support group, or helping your school have better food allergy policy, this can help you have a purpose, to your experience, which can help heal trauma.
I hope this paper will help anyone who may be struggling with trauma due to food allergies. It is a general guideline and, obviously, my opinion, as a therapist and a food allergy mom. If you need additional supports I am a big believer in therapy as well. I also hope we as a community begin to look at the aftermath of anaphylaxis through this lens of trauma, as I firmly believe it will better help our community heal. Healing IS possible and we can support each other in the process!