I'd like to address something that is not usually discussed within food allergy clinics, but I think is an important topic that affects families. It is Post Traumatic Stress and anxiety in caregivers, who manage food allergies. Since my daughter's worst reaction, over two years ago, I realized how scary life can be with a young child with food allergies. Watching your baby experience anaphylaxis can be traumatic. The stress of managing avoidance after a severe reaction can be overwhelming. Compounding this stress is the lack of support and validation from a society that often doubts the severity, importance, or even existence of food allergies. This can create the perfect storm of stress, anxiety, and isolation that can make it difficult to cope. I think it is extremely important that we address this issue, so we can destigmatize it and support food allergy families in a more holistic way.
As an allergy mom and psychotherapist, who has worked a great deal with trauma survivors and anxiety disorders, I have been on both sides of this issue. For those of you who are not familiar with the term, Post Traumatic Stress Disorder is an anxiety disorder, which can occur after a person experiences a traumatic event, like watching your child nearly die. Some symptoms include nightmares, flashbacks, re-experiencing emotions when thinking about the event, panic symptoms, avoiding discussing the event or triggers of the event, emotional numbing, hyper-vigilance and an overall increase in anxiety. These symptoms, can impact sleep, appetite, attention, focus, memory, patience, and problem solving abilities. There can be an overall feeling of isolation, loss of interest, and at times depression/grief can also be complicating factors after trauma. These symptoms can impair one's ability to manage life stressors in general. Sometimes, these symptoms are short-lived, lasting less than a month, in which case it is called Acute Stress Disorder. In other cases, a person will not meet full clinical criteria, but will have sub-clinical symptoms of anxiety. Nevertheless, all of these conditions are treatable and important to acknowledge and destigmatize.
I remember how I felt after my daughter's first episode of anaphylaxis. After watching her life flash before my eyes, I had a revelation: My child could die in many everyday situations with my slightest mistake. I could serve her the wrong food, forget to reread a label, look away for a minute at a family party, and that is all it takes. That's it! It. Is. Terrifying. My anxiety was through the roof. I felt as if a certain focused hypervigilence was necessary, at all times. There was no longer room for the normal mom-multitasking mistakes, no zoning out, or autopilot if I didn't sleep the night before, because the baby was sick. It is exhausting and impossible. The amount of stress this creates, especially at first and with a young toddler, can be OVERWHELMING. The stress wore me down at times. I found myself feeling burnt out, exhausted, and unmotivated.
To add insult to injury, we had a very scary incident earlier this year, when my daughter mistakenly drank a cup full of milk and subsequently went into anaphylactic shock. It was a simple mistake, something that could happen to anyone: a mixing up of sippy cups. But it nearly killed her and she required two Epi Pens, steroids, IV antihistamines, and an overnight stay in the hospital, in order to recover. Emotionally, she bounced back like a champ; she is such a strong girl; stronger than me. But I could not get over the incident in my mind. I would have nightmares that this was happening all over again, sometimes I would wake up thinking that it did happened again and double check to make sure she was asleep and safe in her bed. I would give her a sippy cup of soy milk in the morning and be filled with fear and dread and be forced to check, recheck, and check, yet again, to make sure it was soy milk, even though I had gotten rid of the all of the milk in my home. It was as if my mind was sort of stuck and thought the event was still happening. As a clinician I knew what this was; but I still struggled through it.
Healing from experiences like mine, takes support. Clinicians who work with trauma survivors know that when people are heard, believed, validated, and emotionally supported, they have a better chance at healing from trauma. This is the reasoning behind therapy and group therapy. However, in the case of food allergies, being believed, validated, and supported by one's community is often NOT the case. As a food allergy mom, I have encountered countless reports from other parents who have had many negative interactions with family, friends, neighbors, and acquaintances who have questioned the seriousness of their child's food allergies, their parenting practices, or even their sanity. This lack of validation from a system can make healing and coping more difficult. That is the uniqueness of food allergies. It is an isolating, scary, and possibly traumatic thing; essentially the perfect storm for complicated trauma and anxiety.
So what can we do? In my opinion, peer support is necessary. Surround yourself with people who understand food allergies and who support you in your efforts. If it feels helpful, talk about it. I did get through the worst of my experience largely due to the support of fellow moms and allergy moms, who "get it". Telling my story to my nonjudgmental friends, who understand the seriousness of the situation and also provided support for me, seemed to help me move past it. Also, self care is a MUST! Take time away from the food allergy grind. Do things you love, are passionate about, and enjoy. Make time to laugh, exercise, do yoga. Find meaning in other parts of your life. Lastly, please seek treatment if needed. I, myself, sought professional help to cope with this issue at one point. Anxiety is treatable, many times with short-term interventions, like cognitive behavioral therapy or medicines. There is no shame in seeing a mental health professional; it can be part of self care. I try to remember that as a mom; if I am well, I will be better able to care for my children. I am modeling self-care and self-love for them as well.
I hope this post will provide some support to other moms and allergy moms out there going through these challenges of anxiety, stress, and possibly Post Traumatic Stress. Please know that you are not alone. Help is available and healing is possible with a strong community, self care, and treatment. We are all fighting an uphill battle but we can help each other through it and support each other in being well. Sending love and thanks to my community as well for helping me muscle through! You know who you are! xoxo