Trying to make sense of care versus extreme anxiety

Written by Maria Said AM, CEO of Allergy & Anaphylaxis Australia

People that make contact with Allergy & Anaphylaxis Australia (A&AA) often want our assistance with a challenging issue. Sometimes the challenge is with an external body such as a food manufacturer, a café, a workplace, a sporting centre or a school but at other times it might be a family member, the person with food/insect allergy themselves or even a spouse. Our experienced staff take a detailed history of the situation at hand and then try to work through it with the caller.

Management of severe allergy which impacts on quality of life means that sometimes (or often for some of us), we need to look at the big picture and assess real risk. This can be hard to do when you are engulfed in a situation. People often call and reach out to us as a sounding board saying, “Should I be as concerned as I am?” At times we feel so overwhelmed by all that needs to  happen to manage risk that we lose confidence in our own judgement and need to be reassured that the road we are taking is in fact a reasonable road to take. As an organisation that has been in this space for almost 30 years we can often (not always) assist with ideas on the way forward. What we have learned is that when we are reasonable in our requests for safer management people will (mostly) support us. We need to look at the big picture, draw on published research and our experience and then work on a way forward.

For A&AA that way forward is very much about facing what is real. Sometimes we are driven by anxiety itself. Living with severe food allergy which is life altering and in many cases potentially life threatening sometimes tests our ability to live with stress, to figure out what risk is very real and what catastrophe is very remote. In an ideal world we’d tell people with food allergy not to ever eat and the stress would resolve itself. However, we all need food to survive and we all eat several times a day. Food is not just sustenance it is also a very important social activity. Like those without a chronic disease, we want to do much more than just survive! We want to live life to the full; we don’t want to feel different and we certainly don’t want our children to be different.

So how do we make the most of life when we have a condition such as food allergy that is constantly ‘in your face’? I remember asking my child’s allergist how to manage food allergy back in the early 1990’s. The answer was simple, “Just make him eat from his own lunch box.” As I struggled with anxiety I realised it was much more than that. I was petrified of him having another anaphylaxis. I looked for every possible risk and did my best to prevent a reaction.

I remember thinking it would be great for an allergy specialist to have a child with food allergy for just one whole day to see how easy it was not to worry.

Eventually it dawned on me that whilst people can and do die as a result of anaphylaxis, death from anaphylaxis is rare. In fact, almost all people that have an anaphylaxis survive. I don’t for one minute want to dismiss any of the needless deaths we have had from anaphylaxis. Each and every one of the families that have lost loved ones want us to learn from their experiences and we share the information we share to promote best practice with them by our side.

Some people worry about what others have had for breakfast at home and the risk of their child having an anaphylaxis at childcare or school. Others have thought twice about the child having swimming lessons in case someone eats peanut or has a snack containing another allergen and then jumps in the pool. These big worries need to be tackled head on. If these were a real risk to people with allergies wouldn’t we have a lot of people presenting to hospital with anaphylaxis on arrival at school or when jumping into a pool? It really does not matter if a teacher at school wears make-up containing a nut oil because the level of risk to a child with nut allergy is very, very small. If it were a real problem to be concerned about we’d have many reported reactions.

We need to do a reality check with each anxiety provoking activity. What is the real risk? If we wanted to totally remove any risk, we’d be taking real life away from many children (and even adults).  If we make management of food allergy too hard, we will get less and less support and things that really do matter will be written off as needless strategies to reduce risk as well.

Many will say, and rightly so, the risk of a car accident at any given time is much higher than the risk of having an anaphylaxis yet we don’t think twice about jumping into a car and taking our children with us. We do our best to keep them safe (strap them into their seats, follow road rules etc.) but we don’t for a moment think I am not going to drive today in case we have a car accident. Risk is always there and we need to manage it.

Many parents say their child’s allergy is very severe so they need to be that careful. The reality is that a child with a skin prick test result of 7x9mm can have a more severe reaction than a child whose skin prick test result is 17x23mm. Severity of a given reaction is unpredictable. Whilst we know both these children will probably have an allergic reaction there are many other factors that impact on the severity of a reaction at a given time. We all need to do what we can to prevent reactions from happening but JUST AS IMPORTANTLY we need to know how to manage them appropriately when they do.

A mother recently spoke of her dismay because a yogurt outlet had crushed nuts as a self-serve topping option. Her email pleaded with us to communicate the injustice of a facility serving nuts and not preventing cross contamination of nuts and other yoghurt toppings. Whilst we can see how frustrating and maybe even frightening this was for the 13 year old with peanut and tree nut allergy it was an opportunity for the teen to make an informed choice on level of risk and maybe next time, encourage their friends to go to a café/fast food outlet/facility that posed less risk for them. Hard? Yes, but part of growing up with food allergy.  Is this facility an injustice for the person with cow’s milk allergy as well? Whether we want to accept it or not, people with food allergy are different. We have special needs and we need to learn to do some things differently.

This has been a challenging article to write for a number of reasons:

• I shared how I struggled with anxiety and its management when my own son with food allergy was little.
• People’s anxiety is very real and I don’t want to dismiss or minimise it.
• Nobody becomes less stressed because we want them to. It is important to learn how to manage stress and seek professional help when needed.
• One death is one death too many and nobody can ever say it won’t be our loved one. We cannot ever console people who have lost a loved one by saying death from anaphylaxis is rare.

What I can share is that in my experience, parents that are stressed often have children that are stressed. We, as parents, need to manage our stress so that our children can feel empowered in managing their allergy as they get older. Many of us need help to manage our anxiety and that really is OK. It is better to get help sooner rather than later. Don’t sit back thinking things are not bad enough yet. If you/your child are showing signs of anxiety speak with your doctor (GP or allergist) and think about learning some skills to help manage the anxiety. Speaking with a doctor/psychologist or other health professional about your anxieties may help to give you and/or your child some perspective on the real risk of your allergies and appropriate care to be taking.

It would be great to have a psychologist or social worker as part of every allergy clinic. There are times when we could all do with some support. Having someone that understands how careful we need to be that can guide us on what reasonable anxiety as opposed to extreme anxiety looks like can really help.  We all need to have some anxiety around food allergy because that helps us manage risk BUT how much anxiety is too much anxiety? If your anxiety stops you or your child from enjoying life or if it stops you from engaging in activities then it is probably time to seek help. This is a good thing to do. People that seek help see the big picture, you are not weak; you have insight and you know things can be better. Thumbs up to you!