The emotional side of food allergy treatments

​Note:  I'm not an allergist, so this piece should not be taken as medical advice. However, I'm a licensed clinical professional counselor that often works with those managing food allergies, as well as a parent of a child with a food allergy that has taken part in a clinical trial and follow up treatment. I've experienced the feelings that many parents feel while pursuing treatments, but also have the clinical background to know it's important to explore any and all emotions while pursuing food allergy treatments. Please always be sure to communicate all thoughts and feelings with your allergist or treatment team. [Article Updated July 2021]

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 ......HOPE......

Photo Credit: Pixabay

When we think of pursuing food allergy treatments, hope tends to be the leading emotion. Hope for positive outcomes. Hope that pursuing the treatment will result in the ability to tolerate accidental, small or maybe even large amounts of the allergen. Hope that quality of life will improve once in maintenance. 

However, the reality is that food allergy treatments don't always go as planned. With oral immunotherapy (OIT) for instance, some can tolerate doses, while others can't. In cases where OIT doesn't go smoothly, working with your allergist on adjustments, such as changes in dosing amounts, dosing foods, or time of doses may help resolve potential roadblocks.

​But SOMETIMES, tweaks and changes don't resolve the issues. Whether it's for medical reasons or due to psychological barriers, sometimes food allergy treatments come to a screeching halt. Therefore, it's no surprise that some of the emotions that may follow this scenario are...

.....FEAR......FRUSTRATION......DESPERATION.......GUILT......​

It's these less popular emotions I'd like to explore. I'm fully aware that this piece may be encouraging you to visit thoughts and feelings that may feel better staying put, stuffed down deep inside. While exploring these emotions may make you feel vulnerable and uncomfortable, it's important to process them, as they themselves can create food allergy treatment roadblocks if left unchecked. Read through some of the thoughts and feelings below to help identify if any have been involved in your journey so that you can process them and move forward.

*NOTE: While the content below is helpful in exploring thoughts and feelings, please be sure to always discuss any treatment-related thoughts, feelings, decisions, or potential roadblocks you're experiencing with your allergist or treatment team.*

FEAR 

• Fear may be brought on by the idea of navigating anaphylaxis, or even minor reactions as part of the food allergy treatment journey.
  
  
• The fear may be due to the thought of returning to strict allergen avoidance. Sometimes the hope for food allergy treatment success changes your perception regarding the option of avoiding the allergen. Returning to this approach, one that you've likely employed for years before considering treatment, may suddenly become frightening and even unimaginable. 
  
  
• Perhaps the fear is about making the wrong choice. Deciding whether to push through treatment roadblocks, to pause, or even to stop treatment can be a tough choice. While your allergist needs to be a crucial part of this decision-making process, your thoughts may run wild, leading you down rabbit holes filled with worst-case scenarios and "what if" worries. In this case, it's important to check those worries with your allergist in order to get factual information that will help you make these decisions. 
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• Maybe the fear is driven by the loss of hope. Food allergy treatment involves lots of emotions, both positive and negative. Therefore, it can feel like falling off the cliff of hope if treatment doesn't pan out the way you envisioned. When food allergy treatment doesn't go as planned, or the decision is made to stop, you have to grieve that loss - for yourself and/or for what you had envisioned for your child. 

FRUSTRATION 

• With all of that hope, it's completely understandable to feel frustrated if your food allergy treatment isn't progressing smoothly, or if you need to stop treatment. Frustration may even give way to disappointment, annoyance, and anger. 
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• If your parental goal is to push through treatment roadblocks, but your child doesn't share that same goal, frustration may arise. While you might not want to admit it, you may even be feeling frustrated with your child for not seeing the bigger picture and wanting to continue treatment. But the truth is, if your child is the one receiving the treatment, they need to be on board, otherwise, treatment itself may become a downright battle of wills. If you find yourself in this scenario, it's best to have an open and honest conversation with your child, exploring pros/cons of treatment, why he/she is finding it difficult, and what he/she might find helpful. Approach it as a team, one that includes your allergist - together, you're going to attempt to find a solution that works, even if that solution means taking a break or stopping treatment. 

DESPERATION 

• ​Sometimes, when treatment has become difficult and/or you or your child wants to stop, the feeling inside of you is one of complete desperation. In the case of your child receiving treatment, the desperation may be about helping him/her to "get it" - to see the bigger picture and understand the gains and freedom continuing treatment might allow. The desperation may drive you to burn the midnight oil, researching foods to mask the taste, approaches you can utilize to encourage continued treatment - anything to just keep your child willing to take part in the treatment. While it's wonderful to problem-solve and look for solutions to help your child reconsider, the question becomes: How hard do you push, and at what emotional expense? The reality is, if you've discussed the roadblocks with your allergist, tried a variety of tweaks, and are still finding that your child isn't a willing participant, then it may be time to consider taking a break or stopping treatment all together....and that can be a hard pill to swallow. (Note: No treatment decisions should ever be made without discussing with your allergist first).

GUILT 
Guilt may come in two forms: Guilt for not pursuing a food allergy treatment, and guilt for pursuing a food allergy treatment. Let's explore both separately. 

• Guilt for NOT pursuing a food allergy treatment - With private practice food allergy treatments become more readily available, including the use of  Aimmune's Palforzia, there are options for people to consider besides just allergen avoidance. However, treatments may not be a fit for all, whether it's due to factors such as age, exclusionary conditions, or personal choice. With that said, even if someone chooses not to pursue a food allergy treatment, there may still be guilty feelings. Especially for parents who may read others' success stories, they may wonder if they're making a mistake by not pursuing treatments and opting to continue allergen avoidance. In addition to questioning their decision, they may feel treatment enthusiasts may even judge their decision not to pursue it. But at the end of the day, the decision whether or not to pursue food allergy treatment is a very personal one that should be made by the individual/family and their allergist. No one should feel they need to defend their reason for choosing not to pursue treatment. 
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• Guilt FOR pursuing a food allergy treatment - Just as some wrestle with guilt for deciding not to pursue food allergy treatments, some may find themselves feeling guilty if they do pursue treatments and the outcome isn't what they expected. When treatment results in developing medical complications or anxiety that begins to impact daily life, parents may feel guilty for having pursued treatments in the first place. However, hindsight is 20/20 and no one has a crystal ball.  It's important to remember that you likely researched the treatment option, discussed it at length with your allergist before beginning, and felt comfortable enough to pursue it. Beating yourself up about the decision or the outcome doesn't do any good, so focus on forgiving yourself, finding solutions, and on moving forward. 

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use this "F WORD" when pursuing
​or taking part in food allergy treatments

I can almost hear the gasps when reading this proposal! Don't worry - it's not the word you're thinking of. Instead, the "F word" when pursuing food allergy treatments is......

FLEXIBILITY!

But what exactly does it mean to apply flexibility while pursuing food allergy treatments? 

• Being flexible rather than rigid about food allergy treatments, which may include challenging initial assumptions about treatment, as treatments aren't one-size-fits all;
• Actively and consistently communicating with your allergist in order to allow for flexibility and change in  treatment approaches if deemed necessary;
• Challenging and shifting your mindset, whether it be your mindset about pursuing treatment, navigating the journey, working through potential roadblocks and outcomes, or the possibility of needing to stop treatment;
• Being compassionate with yourself and your child, understanding that there may be a variety of thoughts and emotions you may experience during the food allergy treatment journey (and not all will be warm and fuzzy);
• Allowing the flexibility to seek out emotional support via a licensed clinical behavioral healthcare provider if you feel like you and/or your child may need or benefit from the support; 
• Allowing others to navigate their own treatment journey without offering too much pressure or judgement.

Final thoughts....

Don't ever hesitate to explore thoughts or emotions with your allergist that may arise before, during, and after treatment. Feelings and thoughts don't always need to be acted upon, but especially if you're noticing that they're impacting your or your child's approach to treatment, it's important that you let your allergist know so it can be explored together. 

​For those that have read my previous pieces or have followed my work within the food allergy community, you know that a key component is focusing on empowerment and resilience. While this piece may force some to uncomfortably explore tough feelings, it is meant to offer "food for thought" to help people truly be honest with themselves - a necessary step in developing resilience. By recognizing/working through tough feelings, and utilizing a flexible rather than rigid approach to these emotions, you'll find your way back to hope again.

Below are helpful related resources to help during food allergy treatments: 

• Allergy-specific therapy worksheets: Focused on addressing allergy anxiety, fear, and worries, including for oral food challenges and treatment
  
  
• Exploring Food Allergy Families podcast episode: Episode 8 - FA Treatments: Tips to Navigate Emotions, Decisions & Power Struggles; also check out other helpful episodes focused on addressing allergy anxiety, challenging thoughts, and preparing for oral food challenges
  
  
• FAC blog post about oral food challenges: Helpful tips for OFCs, which are often part of food allergy treatments
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• Food Allergy Counselor Directory: Find an allergy-informed therapy provider near you. Providers now listed in the US, Canada, Australia and England!
  
  

UPDATE: ​
It may also be helpful to check out this post on a post-anaphylaxis tool known as T.R.A.C.E, which is a compass guiding you back to confidence after allergic reactions, as well as these Oral Food Challenge worksheets which help prepare before the appointment, offer helpful reminders for the day of, and prompts for processing after the food challenge. (There are separate worksheets for kids and teens/adults). Also check out 

You can find these worksheets on the Therapeutic Worksheets page here on the Food Allergy Counselor website. 

You may also want to read or check out the following: 

(Some research recommendations below may only be abstracts or summaries, which require purchasing to gain access to the full content.)

• Changing Patient Mindsets about Non–Life-Threatening Symptoms During Oral Immunotherapy: A Randomized Clinical Trial -  JACI In Practice, May-June 2019 
  
  
• The Effects of Food Allergy on Quality of Life (QOL) - Department of Paediatrics & Child Health, University College Cork, Cork, Ireland
  
  
• Food allergy: Children's symptom levels are associated with mothers' psycho-socio-economic variables - Journal of Psychosomatic Research, January 2018
  
  
• Quality of Life in Food Allergy Patients and Their Families - Pediatric Clinics of North America, December 2015
  
  
• The Current State of Oral Immunotherapy (OIT) for the Treatment of Food Allergy  - American Academy of Allergy, Asthma & Immunology (AAAAI), September 2019
  
  
• Peanut Sublingual Immunotherapy: An Alternative Approach to Peanut Allergy Treatment - American Academy of Allergy, Asthma & Immunology (AAAAI), September 2019
  
  
• FDA to Review Viaskin Peanut Patch for Possible Approval - Allergic Living Magazine website, October 2019
  
  
• Panel Backs FDA Approval for Aimmune's Peanut OIT Drug - Allergic Living Magazine website, September 2019​
  
  
• Food Allergy Thinking Traps worksheet - Tamara Hubbard, MA, LCPC
  
  
• Food Allergy Mindset Matters worksheet - Tamara Hubbard, MA, LCPC
  
  
• The Food Allergy Counselor Directory 

Connect with Tamara and the Food Allergy Counselor (FAC) via social media: