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The Emotional Weight Of Being A Food-Allergy Parent

“I don’t think anybody can watch their kid almost die and be OK.”

When Elliott Livingston was diagnosed with a severe peanut allergy at 18 months old, his mother, Gina, took it in stride. “I was OK at that point,” says the Atlanta mom. “I thought, We got this; peanut allergies are common; things are labeled; we can do this.” But five months later, while eating hummus at a local museum café, Elliott went into severe anaphylaxis. “He turned blue,” says Livingston, who froze looking over his emergency allergy plan trying to decide if she should use his EpiPen. Luckily, a friend was with her and snapped into action, holding Elliott down and telling Livingston to give him the shot. He vomited but began breathing again. They called 911 and rushed him to the hospital, where he had to stay for several days.

“When we got home from that, I was a different person,” says Livingston. “I don’t think anybody can watch their kid almost die and be OK.” Livingston sank into a deep depression, keeping Elliott at home except for school, where she made him sit apart from all of the other kids. One day when she wouldn’t get out of bed, her husband, who is a doctor, told her she needed to talk to a mental health professional.

The stress of food-allergy parenting

“Emotional help related to living with a food allergy is critical,” says Jeanne Herzog, Ph.D., a lifespan psychologist in Elm Grove, Wisconsin. Twelve years ago, a mother sought her out for help managing her stress around her daughter’s food allergy, and Herzog has been supporting parents and kids with food allergies ever since.

“There is stress, not just in finding out that something is wrong with your child that has to be attended to regularly, and not just finding out that if they don’t do their best as a parent their child could die — which are pretty stressful situations in and of themselves,” says Herzog, “but also the fact that it has to do with food, which is a basic need for every human being.” As Livingston says, there is “no taking a break from a food allergy.”

A study earlier this year from the University of East Anglia found that more than 80% of food-allergy parents surveyed say they face “significant worry” about their child’s food allergy, with 39% reporting moderate to extremely severe anxiety and with 42% meeting the clinical cut-off for post-traumatic stress symptoms (PTSS). Parents whose children have had to have an adrenaline auto-injector (for example an EpiPen) administered were seven times more likely to experience PTSS.

Some of the stressors food allergy parents experience include:

  • Worrying about your child’s physical safety and life.
  • Having to scrutinize all food items at all times.
  • Concerns about your child being bullied or excluded at school.
  • Managing the discomfort of having to communicate your child’s allergy to other people who may not always be receptive — in restaurants, at school, aftercare, on playdates.
  • Advocating for your child’s health to be taken care of in school, from showing a teacher how to use an EpiPen, to asking that celebrations not be food-based or be allergen-free, to going through the process of getting your child a 504 plan.
  • Trusting other people to keep your child safe when you cannot be there.
  • Helping your child cope with the fear and stress of living with a life-threatening allergy.
School can be a fraught place for families who cope with life-threatening food allergies.Getty

“We’re always bumping up against other people’s discomfort and you’re always fighting battles — with school administration on what is allowed in the classroom, for instance,” says Livingston. “And we don’t talk about this draining mental health aspect of it. The allergist should hand you your prescription for epinephrine pens and the phone number of a psychotherapist who deals with this.”

Connect with other parents who understand

“Parents often have the experience of others not fully understanding the significance of food allergies and the life-threatening circumstances that can be present,” says Wendy Hahn, Psy.D., a pediatric psychologist at Cleveland Clinic Children’s Food Allergy Center of Excellence. “Having a supportive network can increase a sense of being heard, feeling understood by others with similar experiences, and sharing ideas for coping.”

“Nobody talks about how insanely stressful this life is and that it’s OK not to be OK with it.”

When those supports are not enough, she recommends seeing a mental health provider for evidence-based treatments, such as cognitive behavioral therapy (CBT).

Seek help early

When Livingston talks to parents who have recently received a diagnosis, she tells them, “You need to get an allergist that you trust and a therapist you can talk to.” Herzog, who calls her services coaching to help get around the stigma still associated with mental health care, says “diagnosis is a great time to intervene and offer perspective and support.”

Livingston found her therapist through the app Talkspace. When she interviewed potential providers, she let each of them know that she “was specifically coming to work on my trauma and depression around my kid having food allergies.” She clicked with one and the work they have done together has changed her life. “It saved me,” Livingston says.

And she’s committed to spreading the message that if you are raising a child with a life-threatening food allergy, you need good mental health support. “Nobody talks about how insanely stressful this life is and that it’s OK not to be OK with it,” says Livingston. “Therapy was the single biggest thing that I’ve done for myself that made me feel like things are going to be ok.”

“There are so many good, supportive resources out there. Being in the know gives you power over this thing that feels like it has messed up your lives.”

Cognitive behavioral therapy, usually known as CBT, is one the most successful treatments for anxiety and is what finally helped Livingston manage her post-traumatic stress disorder from her son’s first anaphylactic experience. She and her therapist came up with a “checklist of what is true and not true” to help her in moments when she begins to feel her anxiety response come on. “As soon as I start feeling that panic, I go back to what is true and what is not true in the moment. For instance, what is true is that we are safe when we have our EpiPens with us.”

Make an emotional safety plan

Herzog helps the parents she works with create emotional safety plans in addition to the food safety plan every allergy parent knows about. The key components of Herzog’s plans are:

Knowledge. “There are so many good, supportive resources out there,” says Herzog. “Being in the know gives you power over this thing that feels like it has messed up your lives.” Food Allergy Research and Education has a ton of online resources to help parents navigate all elements of raising a child with food allergies, including how to find a support group.

Facebook and other social media sites are also excellent places to find parents. Here are a few of Livingston’s favorites: Sesame Allergy Information and Awareness, Food Allergy Support Community, and Allergy Travels Group.

An allergist you trust. “If you don’t have a good relationship with your allergist, find another,” says Herzog. “Some M.D.s don’t know how to handle an anxious parent. Find one that promotes an emotional safety plan.”

Advocacy. “Spread the word and educate family and school personnel and friends in a way that’s tactful and helpful,” recommends Herzog. “You can tell other people, ‘My child could die from this.’” Livingston recommends telling “everybody that you can. People being aware of it is what keeps him the safest.” And also gives you better peace of mind when your child is in someone else’s care. She has even printed business cards that list Elliott’s allergies on the front and explain cross-contamination on the back, which she can easily hand out at restaurants or other public locations.

Open communication with your kids. Herzog recommends being open and honest, in an age-appropriate way, not just with your child who has a food allergy, but with their siblings as well. Empowering Elliott to communicate his allergy has been a huge source of comfort for Livingston. “He knows he is not allowed to eat something without checking with us first,” says Livingston, “and he will ask people who offer him food, ‘Is this safe for me?’ Then they will stop and ask him what he means.” He also knows how to use his EpiPen and to make sure they have the EpiPen when they leave the house. “It makes me feel less anxious that he is looking out for himself too.”

Herzog recommends being open and honest, in an age-appropriate way, not just with your child who has a food allergy, but with their siblings as well.Yagi Studio / Getty Images

That knowledge was life-saving last summer when they discovered that Elliott, who can eat most tree nuts, is allergic to cashews. He came up to Livingston in a playground and said in his adorable 4-year-old voice, “My throat doesn’t feel good. I need my EpiPen. I go sit down.”

“And it was not horrible,” says Livingston. “It was not trauma like it has been before.”

How to know when you really need mental health support

It makes complete and total sense that anxiety is part of the picture of parenting a kid with a food allergy. It’s an adaptive evolutionary response “meant to alert us to be aware and take precautions to maintain safety,” says Hahn, such as “discussing food allergies with the school and how safety will be managed, sending safe food items with a child on a field trip or school event, researching or contacting restaurants ahead of time to confirm availability of allergen-free foods and food preparation, or even feeling some mild level of distress while completing medically monitored allergy treatments for the first time, such as oral food challenges.”

But, if anxiety begins to infiltrate other parts of your life — or comes along with depression — and “feels overbearing, or causes a change in your behavior, mood or coping mechanisms,” then it’s a really good idea to talk to a mental health professional, says Herzog.

That’s what Livingston did when her anxiety and depression were keeping her in the house and in bed. Other signs include:

  • difficulty controlling your worries
  • panic attacks
  • avoiding situations or activities that you used to feel were safe
  • restricting your child from safe activities
  • difficulty sleeping
  • intense irritability
  • not enjoying things that used to make you happy
  • withdrawing from people

“These are some signs that parents would benefit from mental health care,” says Hahn.

After that first anaphylactic reaction, Livingston felt like she had a choice: “Would I rather keep him in my little bubble inside my house where I know that he is always safe? Or is it more important to let him have a really happy and fulfilling life? We do what we can to protect him, but I’ve made the decision that I want him to have a really great life even though there’s this scary thing looming every time.”

Therapy is what helped her reach that conclusion, says Livingston, “and that has been really freeing.”

Experts:

Jeanne Herzog, Ph.D., a lifespan psychologist in Elm Grove, Wisconsin

Wendy Hahn, Psy.D., a pediatric psychologist at Cleveland Clinic Children’s Food Allergy Center of Excellence

Studies cited:

Roberts, K., et al. (2021) Parental Anxiety and Posttraumatic Stress Symptoms in Pediatric Food Allergy. Journal of Pediatric Psychology. doi.org/10.1093/jpepsy/jsab012.