Maria Said AM, CEO of Allergy & Anaphylaxis Australia, shares how her personal experience as a parent of a child with severe food allergies led her into the advocacy space. In this Q+A, she outlines the practical and psychological challenges families face and offers insights into how psychologists can better support those living with life-threatening allergies.
Article summary:
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Maria Said’s advocacy began after the severity of her son’s food allergy was left undiagnosed for years, despite her nursing background and many discussions with colleagues about his symptoms.
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Managing food allergies requires constant vigilance and can feel overwhelming, especially for families.
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Psychological impacts – like anxiety and social isolation – are often underestimated by non-psychology health professionals.
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Effective support requires psychologists to understand the day-to-day reality of allergy management.
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Multidisciplinary collaboration (psychologists, dietitians, doctors) helps distinguish real health risks from anxiety-driven behaviours.
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Every allergy clinic should have psychologists embedded to support patients with debilitating fear and anxiety and post-anaphylaxis.
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Psychologists must build trust by demonstrating a clear understanding of food allergy/anaphylaxis-related challenges and offering realistic, supportive care.
1. Can you share your personal journey with food allergies and anaphylaxis, and how it shaped your advocacy work?
I am a registered nurse and worked primarily in emergency departments and paediatrics before I had children. In 1990, I had my second child who had eczema and was hospitalised with bronchiolitis at eight months-old. At 12-months-old, I gave him a peanut butter sandwich, and he had his first allergic reaction. It took me three years to get my son’s food allergy properly diagnosed, as his GP simply told me to not give him peanuts, without realising just how severe his allergy was. My son also developed asthma and severe allergic rhinitis from a very young age and, as a result, was medicated every day.
The fact I was a nurse complicated things at the time because people thought I knew too much and was just overly cautious. I’d never heard of food allergy. It was never mentioned in my nurse training. I remember a lecturer once speaking about anaphylaxis (a potentially life-threatening allergic reaction) for five minutes, but it was in relation to drug and bee sting allergy. After many doctors' visits and hospitalisations with my son, my GP said he’d read something in a journal about food anaphylaxis and sent my son to see an allergy specialist. I was told he was highly atopic and needed to have an adrenaline device everywhere he went because his food allergy was potentially life threatening.
That’s where my journey started. There was no support until I joined a fledgling support group. That support group is what is now Allergy & Anaphylaxis Australia (A&AA). I volunteered for many years and have been at the helm since 1999.
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Maria Said AM, CEO of Allergy & Anaphylaxis Australia
2. What are some of the most common challenges faced by individuals – and families – living with food allergies?
The biggest challenge for people with food allergies is that some people don’t understand how onerous management is until they/their child develop a food allergy. People need to learn how to manage on the run and this can be frightening because mistakes are easily made.
There are many other aspects that can be challenging, such as:
- Having to always be switched on, checking every food and drink (because allergens are very often hidden in other foods).
- Carrying medication (an injection) in case of anaphylaxis.
- Ensuring you are with people who can hopefully help you.
- Finding a restaurant to eat at that you can trust has understood your food allergy requests.
- Entrusting a childcare centre/school with your child, going on a camp, teens being out alone with their friends, etc.
- Having family members or friends who don’t or won’t understand the seriousness of the allergy, which can cause stress when attending family gatherings, meaning some people choose not to attend.
It takes time to learn how to manage food allergies – finding the right balance of care without overly restricting your/your child’s life. A little anxiety helps keep you safe but too much impacts life in a negative way and often affects the whole family. It’s hard for a parent to know how much should be said to a child with food allergy and often, parental anxiety around food allergy/anaphylaxis can result in the child also feeling anxious.
You can’t have a break from food allergies because we need to eat several times a day and even something we have eaten before safely could have an ingredient change and therefore be a risk.
3. In your experience, what emotional or psychological impacts are often underestimated or overlooked by health professionals outside psychology?
It has taken some health professionals a long time to understand the challenges of living with food allergy.
They have now learned it’s not easy to ‘avoid the food’ you are allergic to. Having health professionals who understand management outside the consulting room helps people with food allergies, and parents/carers, to feel supported.
We need more psychologists to understand what normal, everyday management looks like, so they can more effectively support people whose anxiety is stopping them from engaging in life.
Once a person with food allergy/parent hears a psychologist say something that indicates they don’t understand standard management, they are less likely to go back.
4. What do you believe are the most impactful ways psychologists can support individuals or families managing food allergies?
Psychologists who aren’t yet trained in this space can take steps to enhance their understanding of everyday management of food allergy and risk of anaphylaxis, so they can work with clients in a way that imparts knowledge of what is acceptable management and what is not.
This will give the client/parent/carer confidence that the plan for the way forward is appropriate. Psychologists could engage with the A&AA, or the client's medical team, if they wanted to understand more about acceptable daily management of food allergies.
5. In situations where anxiety about food allergy becomes debilitating, what collaborative approaches between psychologists and other healthcare providers have you seen work well?
Psychologists and health professionals can communicate with each other about clients with debilitating anxiety, so they gain a clear picture of what constitutes a real health risk versus what might be extreme anxiety. We also encourage psychologists to liaise with dietitians when an eating disorder/weight loss/poor growth in childhood is suspected.
Allergy & Anaphylaxis Australia also has trained health professionals answering enquiries from a range of specialties, in addition to queries from individuals directly impacted by allergy. Psychologists can call 1300 728 000 or email us through the Contact Us form on the website www.allergyfacts.org.au
The website contains an abundance of evidence-based information to help people with everyday management of food allergy and anaphylaxis.
6. Looking ahead, what systemic changes would you like to see to better support the mental health and wellbeing of people living with food allergies and the risk of anaphylaxis?
I believe every public allergy clinic (adult and pediatric) should have a psychologist (or two) as part of the team, as many people with food allergy/risk of anaphylaxis require mental health support.
Anyone who experiences anaphylaxis should be offered an appointment with a psychologist. If someone experiences trauma related to an allergic reaction that is not worked through, they are more likely to develop anxiety that has the potential to impact their health and wellbeing and that of their family/social group/workplace.
7. What message would you most like psychologists to hear when it comes to supporting individuals with food allergies and their families?
Psychologists who understand this unique, often chronic, health condition can help people develop skills to manage their anxiety when it comes to food allergy, risk of anaphylaxis and post-anaphylaxis.
Understanding good management of food allergy/risk of anaphylaxis and needs of those post anaphylaxis will help psychologists tweak existing treatment, build client/parent/carer confidence and better support the challenge/s at hand. It’s important that psychologists communicate an understanding of the challenges of living with a severe allergy, as that will help build confidence in the treatment plans offered by psychologists.
Additional resources