Supporting clients through the anxiety and exhaustion of food allergies

The diagnosis of a food allergy is life-changing, not just for the individual but for those who love and live with that person. In addition to avoiding exposure to certain foods, the condition requires that these families and individuals explain, over and over again, the seriousness of the allergy at schools, restaurants, social gatherings, workplaces, daycare facilities and countless other places.

It can all be exhausting, says Tamara Hubbard, a licensed clinical professional counselor whose son was diagnosed with a peanut allergy six years ago. Families receiving a new allergy diagnosis face steep learning curves that can cause them to worry and to overthink every detail of what their child or other loved one eats or might be exposed to.

“It’s almost like Russian roulette. You don’t know when an [allergic] reaction will happen, even when you take precautions,” Hubbard explains. “There’s a constant level of fear and anxiety at all times in the background that parents and caregivers need help managing.”

Food allergies affect an estimated 4 to 6 percent of children in the United States, according to the U.S. Centers for Disease Control and Prevention. Between 1997 and 2007, food allergies increased 18 percent among American children and adolescents younger than 18.

A food allergy reaction sends someone in the United States to the emergency room every three minutes, reports the nonprofit organization Food Allergy Research & Education (FARE).

Counselors can help clients work through the anxiety and other mental health issues that food allergies sometimes exacerbate, but they can also be a source of support simply by serving as a listening ear. Clients may come to a counselor’s office worn out from the self-advocacy and constant vigilance that a food allergy requires, explains Hubbard, who has a private practice in the suburbs of Chicago that specializes in supporting clients (and their families) with food allergies.

With food allergies, there is sometimes “a constant feeling of having to fight in every conversation to get your point across,” she says. “Just being an empathic, listening ear [as a counselor] and wanting to learn, that makes a huge difference in their anxiety level and ability to release tension.”

At the same time, counselors should research and learn about food allergies to become a competent support to clients, Hubbard emphasizes. For example, they should know that an intolerance or sensitivity to a food is very different from a diagnosed allergy.

With a food allergy, the immune system views the allergen — for example, wheat, shellfish or peanuts — as an invader and overreacts whenever it enters the body. Someone who ingests a food that he or she has an intolerance or sensitivity to will experience discomfort but not the potentially life-threatening reaction that comes with an allergy, Hubbard explains.

Counselors who understand the biological and mental health implications of food allergies can help these clients to live fuller lives, Hubbard says. Although the most important thing counselors can do is learn about and understand food allergies, exercising compassion is also essential, she says.

“Sometimes, even medical professionals aren’t good at that part. They send [people] off with an EpiPen and say, ‘Come back in six months.’ In a perfect world, they would send them off with a list of resources for mental health and wellness,” says Hubbard, an American Counseling Association member. “Counselors can play a very important part to fill in that gap, even if it’s just an empathic ear. That is incredibly therapeutic in itself.”

 

Tempering the uncertainty

The anxiety that families and individuals with food allergies often experience is more complex than simply worrying about possible exposure to an allergen, Hubbard says. Anxiety can spike over everything from sending a child to school and worrying that the staff won’t follow allergy-safe protocols to second-guessing whether a food product might contain nuts, even when the label says it doesn’t.

In the United States, companies are required to note on food labeling whether a product contains one or more of the eight most common allergens. These potential allergens are:

• Milk/dairy
• Eggs
• Fin fish (e.g., salmon, flounder, cod)
• Shellfish (e.g., crab, lobster, shrimp)
• Tree nuts (e.g., almonds, walnuts, pecans)
• Peanuts
• Wheat
• Soybeans

However, U.S. companies are not required to disclose whether a product is made in a facility or on equipment that is or was exposed to those eight allergens, Hubbard notes.

With that in mind, navigating grocery stores, restaurants and social gatherings involving food can be anxiety-provoking for those with food allergies — and especially for newly diagnosed families, Hubbard says. Some parents react by restricting their child’s activity to reduce the risk of exposure.

Allergy diagnoses are sometimes given after a person has experienced one initial anaphylactic reaction. This can create uncertainty concerning how much of the allergen is too much. For example, is it OK to be near someone else who is eating the food to which the person is allergic?

“There is fear of the unknown: ‘How much of the allergen will it take for my child to react?’ There are different layers to the anxiety, and it’s important [for counselors] to understand each layer,” Hubbard says. “Also, the anxiety affects each member of the family; they will all feel it. There’s a lot to unpack when you are assessing a client who is dealing with food allergies.”

Counselors who understand the complexity of the issue can help clients find balance and equip them with tools to manage the anxiety, Hubbard notes.

“Ultimately, the goal is to help the client — whether it’s the allergic person themselves or a caregiver — assess the risk for every situation they’re going to be in. Is their anxiety based on fact or emotion? We can tell ourselves that everything is unsafe, or we can navigate [the risk] and take precautions,” she says.

 

Finding balance

There is a balance between living in fear and frustration because of food allergies and still enjoying a good quality of life, Hubbard stresses. “Understand that in many cases, when someone is newly diagnosed, especially if it’s a young child, the person or family may be very overwhelmed initially,” she says, “as there can be a steep learning curve when your lifestyle needs to suddenly change due to a food allergy diagnosis. Some people navigate this well, while others need support and guidance. I typically encourage people to remember that it will take time to get used to the diagnosis and gain all of the necessary knowledge to live a well-balanced life between food allergy fears and empowerment. I also encourage those who are newly diagnosed to learn the basics at first and, over time, as they feel ready, branch out to other related food allergy topics, such as potential treatments, research and advocacy.”

Here are some tips for counselors to keep in mind related to food allergies:

> Prepare for an emotional roller-coaster: Food allergies can be life-threatening, so it’s understandable when individuals (or their families) experience strong emotions such as fear, sadness, anger or guilt connected to the diagnosis. Of course, these emotions can eventually lead to becoming overwhelmed or burning out, Hubbard says.

“If a child has a [allergic] reaction, the parents can feel strong emotions of ‘what did I do wrong?’ At the same time, they could have done everything 100 percent right,” Hubbard says. “The reality is that it’s a big deal, but that doesn’t mean it has to be a … crisis every day.”

Equipping clients with coping mechanisms will not only help them manage their own anxiety and strong emotions but will also keep them from transferring those feelings to the child or family member with the allergy, Hubbard says.

Counselors can also help clients work through their feelings of loss concerning what their life (or their child’s life) might have been like without the limitations of a food allergy. For example, they may yearn to eat at a restaurant without having to ask about the establishment’s allergy protocols or to eat lunch with friends in the school cafeteria instead of sitting at a separate table or worrying about what foods they could be exposed to.

“These children [with food allergies] have to grow up a little quicker in some respects. They have to learn to speak up for themselves and make decisions,” Hubbard says. “It’s about managing the feelings and finding ways to help them empower themselves and advocate to come through with some balance.”

> Move toward acceptance: One of the most important things counselors can do is help clients reach acceptance of the food allergy diagnosis, Hubbard says. This can have similarities to grief work, including helping clients come to terms with the fact that they can’t change the situation, she explains. Narrative therapy can assist clients in reframing their feelings and taking control of their story.

Role-play can be beneficial for clients of all ages because it helps them learn to navigate their feelings and the language they will need to use to advocate for themselves. (For example, how will they explain that they can’t eat the cake at an upcoming birthday party?) Hubbard says she also finds play therapy, mindfulness and cognitive behavior therapy helpful for clients with food allergies.

Above all, she says, counselors should make sure their approaches are tailored to and appropriate for the individual client. “For kids, it’s not appropriate to talk about the risk of death [involved with food allergies], but coping with their feelings and worry is appropriate,” she notes.

Counselors can also model acceptance for clients in session, Hubbard adds. It can be a relief to find that “they don’t have to walk into a session defending themselves,” she says. “They can learn that not every conversation has to be fight-or-flight. It’s a marathon, not a sprint, for sure, just as with any chronic illness. Help clients pace themselves.”

> Find the right words: An individual with food allergies (or the parents of a child with food allergies) will need to explain the allergy to everyone from school staff to well-meaning relatives who are hosting a holiday dinner. Be aware that there can be cultural and generational differences in levels of understanding and flexibility surrounding food allergies, Hubbard advises.

“This can be hard for people who aren’t comfortable speaking up. If they’re not a natural advocate, it will now fall to them to educate [others] and advocate,” she says. “A counselor can help them manage the feelings around that, [including] frustration, burnout and exhaustion.”

> Guide children (and parents) as they grow up: Parents may find themselves growing anxious as their child with food allergies ages, develops more independence and spends more time away from home. Counselors can offer support as these families navigate the child’s developmental milestones. This might include encouraging the family to gradually give the child more freedom and responsibility to make safe choices independently.

For example, teenagers who are beginning to date may have to inform their love interests that they shouldn’t kiss for a while after the person has eaten something containing an allergen. “For every phase of life, there will be an additional need to explain and educate [about the allergy], and that can be exhausting,” Hubbard says.

> Be aware that “relapses” are possible: Clients who have made progress on accepting a food allergy and managing the emotions that come with it can “go back to ground zero” anytime they experience an allergic reaction or exposure scare, Hubbard says. Counselors shouldn’t be disappointed if these clients sometimes backslide on the progress they have previously made in therapy.

> Work with the allergist: Professional counselors shouldn’t hesitate to contact a client’s allergist (if the client grants permission). Counselor practitioners can learn a lot about the specifics of a client’s needs from the allergist, Hubbard says. For example, some food allergies are milder, whereas others can cause a reaction even from airborne exposure (for example, peanut dust). “Each client will have a specific set of data [regarding his or allergy],” Hubbard explains. “It’s important to stay connected with their allergist and check in to help you better understand.”

> Be cognizant that allergy-related bullying does happen: Being aware of allergy-related bullying is especially important for counselors who work in school settings or with children and adolescents in their practice, Hubbard notes. Up to one-third of children with food allergies have faced bullying, according to FARE.

This can include overt bullying, such as taunting or threatening a classmate with an allergen. But allergy-related bullying can also come in less obvious forms, such as when an adult (teacher, sports coach, etc.) points out the individual with an allergy and labels them as the “reason” the class or team can’t have certain foods. This type of scenario can make individuals feel bad about their allergies and the inconveniences they may present, Hubbard says.

 

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The Food Allergy Counseling Professionals Networking Group

Started by Tamara Hubbard, this group is open to counselors who work with clients who are managing food allergies. Connect with them on Facebook: facebook.com/groups/FoodAllergyCounselingProfessionals/ to share resources and network with other professionals who specialize in this area.

 

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Contact Tamara Hubbard and find resources at her website: foodallergycounselor.com

Hubbard also writes a blog on allergy-related issues, including a series titled “Four things counselors should know about food allergies.”

 

 

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Related reading

Hubbard suggests the following resources for counselors or clients looking to learn more about food allergies and their connection to mental health:

 

• Food Allergy Research & Education (FARE), including FARE’s educational webinars
• Food Allergy & Anaphylaxis Connection Team (FAACT) educational resources
• Research from Dr. Ruchi Gupta and the Science and Outcomes of Allergy & Asthma Research Program (SOAAR) at Northwestern University
• Handout from the U.S. Centers for Disease Control and Prevention: Managing Food Allergies in Schools: The Role of School Mental Health Professionals
• Pediatric Clinics of North America journal article: “Clinical management of food allergies”
• From Allergic Living magazine: “Ages and stages of food allergy management”
• Blog post by Tamara Hubbard: “How siblings without food allergies feel about having food allergic siblings”
• Medium article by psychologist Gianine Rosenblum: “Food allergy: Death is not our only fear” 
• Article from The Journal of Allergy and Clinical Immunology: “Bullying and food allergy: A longitudinal follow-up”
• From NPR: “Parents/schools step up efforts to combat food allergy bullying”
• From Allergic Living magazine: “Food allergy bullying: How to spot if your child is a target and actions to take”

 

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Bethany Bray is a staff writer and social media coordinator for Counseling Today. Contact her at bbray@counseling.org.

 

Follow Counseling Today on Twitter @ACA_CTonline and on Facebook at facebook.com/CounselingToday.

 

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Opinions expressed and statements made in articles appearing on CT Online should not be assumed to represent the opinions of the editors or policies of the American Counseling Association.