The Psychological Impact of Living with Anaphylaxis Risks

Anaphylaxis is a severe, potentially life-threatening allergic reaction that can develop rapidly. It is also known as anaphylactic shock. Anaphylaxis is the result of the body’s immune system overreacting to a harmless substance, such as food. Substances that trigger allergic reactions are known as allergens.

The UK has some of the highest prevalence rates of allergic conditions in the world, with over 20% of the population affected by one or more allergic disorders. NHS figures show that there were nearly 26,000 anaphylaxis hospital admissions in 2022-23 (25,721 admissions), more than double the 12,361 hospital admissions in 2002-03, a 108% increase. For food-related anaphylaxis and other adverse reactions, the rise is even higher, going from just under 2,000 hospital admissions 20 years ago (1,971 admissions) to over 5,000 hospital admissions last year (5,013 admissions), a 154% increase.

Anaphylaxis can be fatal and can develop suddenly at any age. People at risk of anaphylaxis should always carry two adrenaline auto-injectors (AAI), regularly check that they haven’t expired and ensure they know how to use the brand prescribed to them. By knowing how to prepare for and what to do in an emergency, it is hoped that people with allergies will survive anaphylaxis with less serious consequences, and reduce the number of people needing hospitalisation.

However, in addition to the physical consequences of anaphylaxis, there are other consequences of living with anaphylaxis risks, particularly the psychological and mental health effects on a person with the condition.

Anaphylaxis risk impact on mental health

When someone experiences anaphylaxis, or an allergic reaction, particularly for the first time, this often results in increased anxiety, new worries and a growing sense of uncertainty. Sometimes these feelings show up immediately, or they may surface after a period of time. It is important to understand that these thoughts and feelings are a normal post-reaction. 

Living with anaphylaxis risk can heighten a person’s sensitivity and alertness to anything that may feel like the early symptoms of anaphylaxis, or an allergic reaction, such as:

• Red, itchy skin
• Cough, chest tightness, or trouble breathing
• Stomach pain and/or nausea, vomiting or diarrhoea
• Swollen tongue or difficulty swallowing
• Headache, sweating or dizziness

This can make a person hyper-sensitive to any body changes and can lead to a person feeling hesitant and uneasy, particularly in unfamiliar environments where they may not be able to control things that may trigger an allergic reaction or anaphylaxis. It is normal for people to feel guilty, worried, anxious or unsure about “what is safe” for them. However, for some people these feelings of “not knowing what is safe anymore” can result in avoidance of food, or situations that everyone knows are safe, but cause them too much anxiety. This in turn can have very negative effects on a person’s mental health and wellbeing, and could lead to the development of a variety of mental emotions and disorders such as, but not limited to:

• Feeling sad
• Nervousness
• Feeling scared
• Distress
• Stress
• Anxiety
• Depression
• Developing phobias
• Social anxiety
• Panic disorder

Over half (53%) of people living with allergies in the UK regularly avoid social situations due to their allergies. 52% of people regularly felt they had to play down their allergies due to fear of judgement from family, friends or employer, leading to feelings of fear, isolation and depression, which in turn impacts their mental wellbeing. Let’s look at some of these psychological impacts in more detail.

Stress and anaphylaxis

Dealing with anaphylaxis can be a stressful business and the influence goes both ways; not only can allergies cause stress, but stress can make allergies worse. Stress amplifies a person’s emotional reaction to any symptoms that they are having and can intensify how concerned the person is about their allergy symptoms. When people are under stress, they can feel as if nothing is going well, including their health. 

Stress can also make the allergic response worse. It is thought that stress hormones such as cortisol, can ramp up the already exaggerated immune system response to allergens. Cortisol is a hormone that contributes to several bodily functions, including the fight or flight response to stress. When a person believes that they are in danger, the brain releases an extremely powerful chemical called adrenocorticotropic hormone. This hormone triggers the adrenal gland, which is located just above the kidneys, to release cortisol.

The body uses cortisol to halt any non-essential physical processes. As non-essential functions shut down, the person will gain a burst of strength and energy to deal with the potential threat. The release of cortisol may also cause emotional arousal, giving people strong emotions, such as anger and fear. So, if a person is feeling stressed for any reason, over time they may find themselves dealing with worse allergy symptoms than usual.

Stress can be reduced with exercise. Although exercise won’t make the stress disappear, it can reduce some of the emotional intensity that a person is feeling, clearing thoughts and letting a person deal with their problems more calmly. 

The feeling of loss of control is one of the main causes of stress and lack of wellbeing. The act of taking control is in itself empowering. This can include taking precautions to mitigate the risks of an allergic reaction or anaphylaxis happening, particularly in unfamiliar environments.

Anaphylaxis risk-related anxiety and depression

If a person has had anaphylaxis once, their risk of having this serious reaction increases, and future reactions might be more severe than the first reaction. This may cause a person to develop anaphylaxis risk-related anxiety and depression. For a few people, experiencing anaphylaxis can sometimes result in longer-term increased anxiety, or lead to post-traumatic stress.

Research on the impact of anaphylaxis on adults is sparse; however, one UK study has shown that anaphylaxis has a significant impact on the quality of life and mental health of adults. The constant vigilance required to avoid respective triggers, which involves continually assessing risk in their environment, may account for this. 

Almost half of the female adults in this study reported moderate to severe anxiety levels, and both anxiety and depression levels were higher in females compared to norm data. Anxiety due to anaphylaxis has been reported in younger age groups in both males and females. The reporting of anxiety and depression highlights the impact anaphylaxis has on the day-to-day living of adults with this condition.

Anxiety can cause many different symptoms. It might affect how a person feels physically and mentally and how they behave. Physical symptoms of anxiety can include:

• Faster, irregular or more noticeable heartbeat
• Feeling light-headed and dizzy
• Headaches
• Chest pains
• Loss of appetite
• Sweating
• Breathlessness
• Feeling hot
• Shaking

Sudden, intense anxiety and fear might be the symptoms of a panic attack. To help with anxiety, fear and panic related to anaphylaxis risk, try talking about your feelings to a friend, family member, health professional or counsellor.

Most people go through periods of feeling down when they are living with allergies, but depression caused by anaphylaxis risk can affect some people, and can cause a wide variety of symptoms. These can range from lasting feelings of unhappiness and hopelessness, to losing interest in the things you used to enjoy and feeling very tearful. The constant vigilance required to avoid allergic triggers, which involves continually assessing risk in the environment, may account for this.

More than just a bout of the blues, symptoms of depression occur most of the day, nearly every day and may include:

• Feelings of sadness, tearfulness, emptiness or hopelessness
• Angry outbursts, irritability or frustration, even over small matters
• Loss of interest or pleasure in most or all normal activities, such as socialising, hobbies or sports
• Sleep disturbances, including insomnia or sleeping too much
• Tiredness and lack of energy, so even small tasks take extra effort
• Reduced appetite and weight loss or increased cravings for food and weight gain
• Anxiety, agitation or restlessness
• Feelings of worthlessness or guilt, fixating on past failures or self-blame
• Trouble thinking, concentrating, making decisions and remembering things
• Frequent or recurrent thoughts of death, suicidal thoughts, suicide attempts or suicide
• Unexplained physical problems, such as back pain or headaches

It is important to seek help from a GP if you think you may be depressed. Talking therapies, such as cognitive behavioural therapy (CBT), may be used to help with mild depression.

Anaphylaxis risk impact on teenagers and young people

Allergy and the risk of an allergic reaction, or of anaphylaxis, can affect the wellbeing of teenagers and young adults in many different ways. Those living with allergies must be constantly vigilant to avoid their allergic trigger and a potential reaction as there is currently no cure for allergic disease. 

The effective management of anaphylaxis can be done by adhering to various food allergy-related self-care behaviours, namely the avoidance of allergens, and the carriage and use of adrenaline auto-injectors (AAI). Unfortunately, the compliance of teenagers and young people to these behaviours is believed to be very lax, and the likely reason behind the increased rates of fatal anaphylaxis in this age group. 

Adrenaline auto-injector design, peer influence, and the emotional attitudes of teenagers and young adults were found to be the most significant factors influencing teenagers’ and young adults’ non-compliance to self-care behaviours. 

Qualitative research with adolescents aged between 11 and 19 years at risk of food-related anaphylaxis has noted that the worry surrounding an anaphylactic reaction and the fear of having to use an adrenaline auto-injector as reasons for an impact on the mental wellbeing of teenagers and young adults.

According to Allergy UK, 61% of young adults living with an allergy have avoided social situations because of their allergy. Many teenagers and young adults lack confidence in managing their allergies and find it difficult to speak up for themselves and to let others know about their condition and their needs, for fear of embarrassment. Other ways that allergies and anaphylaxis risk impact the quality of life and mental wellbeing of teenagers and young adults can include, but are not limited to:

• Negative relationships with food including food aversions, and food refusal
• Sleep deprivation due to allergy symptoms, affecting mood and concentration at school, university, or work
• Feeling anxious or depressed
• Visible symptoms such as eczema and hives, causing low self-esteem
• Isolation around social events such as birthday parties, and eating out at certain restaurants/cafes
• Avoiding travel to unfamiliar places including holidays

One area where the greatest impact of anaphylaxis risk can be felt on the quality of life for allergic teenagers and young adults is when they leave home for university – moving from their family environment where people are supportive and fully aware of the risks, to living with people who may not fully appreciate the potential dangers of allergies. Having to be extra vigilant during everyday communal activities such as shopping, food storage and preparation, eating and socialising, can be extremely stressful and cause anxiety. Some teenagers and young adults may become very solitary in order to avoid any risks.

Anaphylaxis risk impact on young children

As with anyone with a severe allergic reaction, children may be at risk of anaphylaxis. If concerned, parents should contact their doctor to find out if their child may have an allergy that could cause anaphylaxis, or whether the child may have already had a mild anaphylactic reaction. The GP can arrange tests to make sure that symptoms aren’t a sign of some other health problem, since other conditions can look like anaphylaxis. The most common anaphylaxis triggers in children are food allergies, such as to:

• Peanuts and tree nuts
• Fish
• Shellfish
• Wheat
• Soy
• Sesame
• Milk

Also, certain medications, including antibiotics, aspirin and other pain relievers available without a prescription, can trigger anaphylaxis in children. These everyday foods and medications are ever present in many environments, so can cause stress for children and also for their parents/carers. 

Stress and anxiety symptoms are common in children with anaphylactic conditions, and anxiety can also be seen in their parents, particularly when the child is outside their direct care. Parents/carers can, if they are not careful, pass these feelings of stress and anxiety on to the child, making them more nervous, and less confident about controlling their own self-care behaviours. In a few cases, anxiety becomes debilitating and imposes unnecessary restrictions on the anaphylactic child’s life, preventing them from engaging in important daily activities at home, at school or socially. They can become withdrawn, depressed or scared of participating in activities.

The key is to prepare both the child and the people in the environments that the child will be in, such as schools, friends and their parents, out of school activities etc., with information about the allergy, allergic reactions and anaphylaxis. Also ensure that everyone including the child, knows what to do should an allergic reaction occur. This preparation and empowerment, whilst not eliminating risks, will mitigate many of them. Also providing a child with a medical alert necklace or bracelet will alert other people around the child of the issue and help to catch a reaction quickly before it gets worse. 

Very young children, however, may be limited in their ability to manage anaphylactic risk, as they are highly dependent on adults. Knowing when to ask an adult for help is an important skill for the very young allergic child to learn, as is teaching them at an early age, for example, to read food labels to identify allergens. The earlier that self-care behaviours are learnt by children with allergies, the more embedded and natural they become, alleviating some of the stresses and anxieties. 

However, being anxious can have its positives, as anxious children are less likely to take risks concerning their anaphylactic conditions than children who are not anxious. 

Worryingly, however, is a fact that 2 in 5 (40%) parents of children with allergies reported their child had experienced bullying due to a condition, which in turn can lead to stress, depression and anxiety. Food allergy bullying, which happens when children and teenagers living with life-threatening allergies are teased, ridiculed or even threatened or assaulted with food that they are allergic to, is especially dangerous. Incidents like this can make school feel unsafe, and can put a child in a life-threatening situation. Parents need to clearly convey the potential seriousness of food allergies to school safeguarding leads so that they can be vigilant, raise awareness and provide support against food allergy bullying.

Anaphylaxis risk impact on sleep and mood

Allergies in themselves can be miserable for sufferers. Not only are the physical symptoms draining, but some people may also develop mood disorders such as anxiety and depression. 

Anxiety and depression experienced by some people at risk of anaphylaxis are often accompanied by sleep troubles. People who develop anxiety or depression because of their anaphylaxis risk may find it difficult to fall asleep and stay asleep during the night, or experience periods of excessive daytime sleepiness. Sleep problems can exacerbate depression, leading to a negative cycle between depression and sleep that can be challenging to break.

Understanding the complex relationship between sleep and anxiety and depression can be an important step in improving sleep quality and better managing anxiety and depression. Sleep issues may influence the function of the neurotransmitter serotonin, which can contribute to the development of depression. Sleep disruptions can affect the body’s stress system, disrupting circadian rhythms and increasing vulnerability to depression. Getting frequent sunlight exposure during the day supports a healthy circadian rhythm that helps you be alert during the day and sleepy at night. Maintaining healthy sleep habits can help, such as:

• Set a sleep schedule – maintain the same bedtime and wake time every day, even on weekends
• Design your bedroom environment to be ideal for your relaxation
• Control light exposure – try to keep the bedroom both dark and quiet, and refrain from watching television or using other electronics that emit blue light before bed
• Try to keep anxiety in check – relaxing activities such as reading, taking a bath, or meditating can lessen anxiety

Anxiety and worry about anaphylaxis risk are often accompanied by edginess, restlessness or irritability. The anxiety, worry and other associated symptoms make it hard to carry out day-to-day activities and responsibilities. It can affect sleep, due to trouble falling asleep or staying asleep, restlessness at night, or unsatisfying sleep. 

Talking to trusted friends, family and colleagues, or contacting a helpline, can help when struggling with low mood, as can reframing unhelpful thoughts. It is natural to feel worried every now and again, particularly about health conditions, but anxious thoughts can sometimes be unhelpful. Unhelpful thoughts include:

• Always expecting the worst outcome from any situation
• Ignoring the good sides of a situation and only focusing on the bad
• Seeing things as either only good or only bad, with nothing in between – this is known as black and white thinking

It can be beneficial to step back, examine the evidence for your thoughts and explore other ways of looking at the situation. This can help to raise your mood.

Anaphylaxis effect on social life 

Having an allergy has been repeatedly shown to have a significant and continuing impact on the daily activities and quality of lives of those who suffer from them. It can also impact the lives of friends and family. There can be significant challenges around family and social events, field trips, parties, sleepovers and socialising with friends. 

These challenges can be anxiety-provoking, and some people avoid some activities altogether. However, a certain level of anxiety is adaptive as it can lead people to take precautionary measures and motivate them to carry their adrenaline auto-injectors.

During social events, exposure to allergens is a common risk, particularly for people with a food allergy, and accidental ingestion of critical foods can occur, especially if others do not realise the severity of the potential reaction. 

Allergy sufferers learn to adapt through avoidance of allergens; taking care to avoid cross-contaminations of foods, carefully and consistently reading food labels, and often facing limits on social activities where food is involved, or sometimes not going to them at all.

Eating out when others have prepared food means having to persistently communicate not only with those preparing the food but also those serving the food, to ensure sustained attention to allergy management. Always check ingredients and be cautious of any dishes with sauces or dressings, unless you are certain of what they contain. When your food arrives, check that it is what you have ordered and check again with the server that it doesn’t contain your allergen(s).

Living with anaphylaxis risk and coping strategies

In supporting a child in managing their allergies and mitigating their risk of anaphylaxis, it is important to make them aware of the risk of a reaction, what that might feel like, and how to use their adrenaline auto-injector. Make sure they carry their injector with them and know how to use it. Using play to practise adrenaline auto-injector use, and involving them in food choices, showing the child how to check the labels to ensure foods are safe to consume and making a game out of checking them, will help to take the stress out of managing allergies and reduce anxieties. 

Educate any adults who care for a child about the allergy and how to use the adrenaline auto-injector. Inform staff at the child’s school of the allergy, and share the treatment plan with them.

Anyone with an allergy should always carry their adrenaline auto-injectors wherever they go. They should carry a minimum of two and make sure that they regularly check their expiry dates.

Adrenaline auto-injector manufacturers such as Jext, have produced downloadable allergy action plan templates. The British Society for Clinical Immunology and Allergy (BSACI) have downloadable action plans available for children. Anyone with allergies and at risk of anaphylaxis, should complete one and always carry it with them so that others know what to do in the event of an anaphylaxis reaction. 

Always read food labels carefully. When eating out, ask restaurants what ingredients are in their dishes and how they prepare them. Sometimes, restaurants may prepare an allergen-free dish in the same pot or pan as an ingredient that you are allergic to.

You should know what triggers your allergies, but make sure that you let your friends and family members know what they are. Make sure they know how to recognise anaphylaxis symptoms, and make sure that they know where you keep your adrenaline auto-injector. Train them how to use it, and explain that they should not wait to see if your reaction worsens. If they are not sure if you are having an anaphylactic reaction, it is better to inject you than not. The risk and impact of an unnecessary injection is less than the risk and impact of not getting the medicine in time.

Wear medical ID jewellery or carry a card that identifies your allergy. This medical ID can save your life in emergencies.

Recognise the difference between vigilance and anxiety. Being vigilant means being in control, being anxious is worrying when you are not in control. If you take steps to mitigate risk then you are in control. 

Mindfulness is a useful strategy to help deal with stress and anxiety. It helps you observe your thoughts without judgement and be more present in the moment. Try breathing deeply, remaining present in the moment, and noticing small details of your surroundings, sights, sounds, smells and sensations. Mindfulness means being present and grounded in the current moment rather than fixating on the past or future. Meditation and other relaxation techniques can also help you to let go of your fixed mindset.

Final thoughts

There are a number of organisations that can provide help and support for those with allergies, and for those who may be at risk of anaphylaxis, including:

Your own GP

NHS 111

Allergy UK www.allergyuk.org

Beat Anaphylaxis www.beatanaphylaxis.co.uk Beat Anaphylaxis have also produced a Food Allergy Supermarket Information sheet to help when shopping

Beat Asthma www.beatasthma.co.uk

Asthma UK www.asthma.org.uk

MedicAlert www.medicalert.org.uk

Action Against Allergy www.actionagainstallergy.co.uk

British Society for Allergy and Clinical Immunology www.bsaci.org

Eating Out / Hotels: www.allergyfreepassport.com

There are also many different apps for supporting people with allergies, which are available from both the Apple App and Google:

Yummly has allergy-free recipes.

Allergy Menu has allergen menus for restaurants in the UK.

If you are having an allergic reaction or anaphylaxis, Alert 5 can contact emergency services, or up to 5 contacts, with your GPS location and details.