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Food allergy anxiety: Food allergy counsellor Samara Carroll shares her insight

Food allergy can create anxiety for many, including parents of children with food allergies. Samara Carroll has lived with food allergies since she was two years old. She got her Masters of Social Work from the University of Toronto and is now a registered social worker who has been working with children and families in clinical and community settings for more than 10 years.

Samara Carroll

We sat down with Samara to talk about Carroll Counselling, a professional service she started to help people affected by food allergy devise strategies to better cope with allergy-related stresses.

What prompted you to start Carroll Counselling?

I started Carroll Counselling in 2015. I have peanut and shellfish allergies, and I also had tree nut allergies which I outgrew when I was 18. Over the years, in my personal life I met many people dealing with anxiety related to food allergy and it seemed like there were few professional services to support them. I understand what it’s like to live with food allergy, and I’ve always had a pretty good balance, enjoying life and still doing things. At the same time, allergies are always there, and you always have to think about them. I know how this can cause anxiety.

I really like working with youth and children and I thought this was a particular group that I could really connect with and help given my personal experiences. I started to do some research to see what was happening in Toronto and in the rest of Ontario and found there’s just not a lot of people even talking about food-allergy related anxiety. I met with the Toronto Allergy Group at the Michael Garron Hospital as well as different allergy doctors at SickKids and it seemed like there was a need for the service. I did about six months of research, developed the website, and then slowly launched it, getting most of my referrals through allergists.

It is unique to have this type of service, exclusively for clients with food allergy. Do you have a lot of clients and do you focus mostly on youth and kids?

I have clients ranging from 7 years old to adults with food allergy. But largely it is parents and children 7-13. I see a few teenagers – I think I should be seeing more teens, but it is harder to engage them – and I also see adults, some in their 20s and 30s who have been dealing with food allergy anxiety at different points in their lives.

For kids I’ll generally spend about 25-30 minutes just with the kid and then invite the parent to join for the next 20 minutes. Sometimes I meet with the parent alone. But the model I just described with the child and the parent together is what I mostly do.

In cases where the parent has a lot of anxiety I will also do phone calls leading up to the sessions or meet with them every third session to give them tools and strategies.

Interestingly, a lot of the parents aren’t as anxious as I thought they would be and they actually want their kids to take more risks in a sense. Often, I see kids whose quality of life is being affected by anxiety around food. Their parents are saying “Hold on, I’m not telling you to eat foods that are unsafe, but we have to go back to getting used to eating at restaurants or at friends’ homes”.

What are the most common sources of anxiety around food allergy?

I speak to mostly children who have had food allergy since early childhood, although lately I’ve had some teenage clients who have been recently diagnosed. Suddenly having to avoid certain foods seems to be very stressful for those diagnosed later in life, as they did not grow up with food allergy.

Parents typically reach out to me because their child has had a reaction, usually around 2-3 months after it happened. Typically, the child was doing okay, then had an anaphylactic reaction at a restaurant or at an extended family member’s house, and ever since has been showing signs of anxiety.

Parents report that their child does not want to participate in afterschool programs; some kids aren’t eating at lunch, and a lot are even double-checking food at home to see if it is safe, even if it’s something they’ve always eaten. I think this type of behaviour makes sense initially after a reaction but of course you want children to go on living life normally.

With some kids, I just check in with them, so they attend six to eight sessions. Many others, however, need more sessions to address other issues, such as being nervous about summer camp or something that has happened at a friend’s birthday party. Some parents have their children continue with sessions as they see the value in them talking to someone who understands food allergies. So, even if it’s not a crisis situation, they continue seeing me.

How would you characterize anxiety and how it presents/manifests?

Sometimes the anxieties can be physical. For example, when you are thinking “Wait, do I smell peanuts in the air?” and then you convince yourself you are having a reaction even though you’re not. I do a lot of work around recognizing where the anxiety is in your body and how it makes you feel anxious. Is it in your stomach, your heart, or your hands? And then being able to try to distinguish feelings of anxiety driven by fear vs symptoms of an allergic reaction.

Is there a lot of anxiety around a fear of having a fatal reaction?

Only a few have said that, but it’s about feeling really sick. With day-to-day living, we focus on the point that it’s rare to have an anaphylactic reaction, so how do we deal with the fact that every day of your life you’re not having a reaction. Then, depending on the age of my client, I’ll share personal stories about travelling, going away to school, and doing all the things my parents were always cautious about but never said “Don’t do it”.

What is your approach to coping with food allergy? What are some of your most common tips for parents, teens, and adults with food allergy anxiety?

A lot of the time kids will ask “Why me?”, so we talk about this first. I explain that everyone has something they have to deal with and this is what we have to deal with, but we have a lot of tools that help us deal with it. So, we think of the basics with EpiPen® being a big one, as kids sometimes refuse to carry it or forget to take it with them. We talk about if anything was to happen, an EpiPen can help treat the reaction. As well, we talk about how the allergy is only part of their life, not everything. Anxiety should not define them.

We do lots of work around building up their confidence by setting goals, which is a strengths-based approach. Sometimes the goals of the kid and the goals of the parents differ a little but generally the parents are very supportive of what their kid wants, which is largely about eating in places outside the home. Even from age seven or eight, children can be working on their own advocacy.

There’s huge dependence, generally on Moms, so it’s important to figure out how they can trust themselves and other people because trust is huge. We also role-play with children practicing asking questions and advocating for themselves. We talk a lot about rational vs irrational fears because often the kids are really worried about the potential for food being cross-contaminated by their allergen. I get them to think about worst case scenarios and we discuss what they might do in the event of an emergency. They come to see that even if they have a reaction, they’ll have some control and will be okay. The unknown is not as scary then.

To reinforce learning and behaviours, I give them different tools and tasks to do throughout the week. In some cases, parents report that their child’s allergist has advised them to eat a food which they have been avoiding, so we work on a strategy together to make this happen.

What is your perspective regarding children advocating for themselves and their own allergies?

Depending on the age, I think it’s important to give children tools to advocate for themselves, even just in a small way. Having them practice with calling restaurants ahead of time or talking to their teachers by themselves, and not having the mentality of “I’m just going to wait for Mom to do it”. Their thought process should be more so, “I’m going to try first and then ask Mom after”. Some of my clients in their thirties are only coming to realize now that they should be calling restaurants ahead of time themselves or that they should be responsible for communicating their allergies to others in an office setting or at work conferences. I think this reluctance to self-advocate is a result of not wanting to be a nuisance, having to out yourself and be different. But then when they are at an event, like a conference, they worry about their safety as they are not sure what’s in the food being served. We weigh the pros and cons of not saying something and then I give them tools to feel empowered to say something and to advocate for themselves.

What do you think are the top issues facing the food allergy community today?

I think one issue is being able to find enough restaurants that are transparent about allergens that may be in their dishes because that can cause a lot of anxiety in kids. The more transparency those providing/serving food can help balance the need to be cautious and being too cautious for children with food allergies. For example, had one kid who was told at their afterschool program that they shouldn’t eat the yogurt snack that was provided because they were allergic to tree nuts, even though the yogurt didn’t contain any tree nuts.

Also, there needs to be more public awareness of food allergies in general. The issue surrounding this is trying to figure out the best way to educate and teach others about food allergies. We should also recognize that over-thinking and being overly cautious can also create anxiety in kids.

Thank you Samara for all of the wonderful work you are doing to help empower families who are dealing with food allergy anxieties and giving them the resources they need! For more information about Samara and her services visit carrollcounselling.com.