I want to start by acknowledging the scary, uncertain time that we are all experiencing. I hope you are all staying safe and practicing social distancing. I don’t want to dwell on the pandemic too much--as I’m sure most of you are as tired of hearing about it as I am--but next week, I plan on making a post about managing food allergies during this time. Stay tuned!
May is both Food Allergy Awareness Month and Mental Health Awareness Month. In honor of both of these, I wanted to shed some light on the psychological impact of having food allergies. As some of you may know, I recently graduated from the University of Toronto with an Honors Bachelor’s of Science in psychology and criminology. Last semester, I began researching the psychological side of food allergies using our school’s database. While there is still a long way to go and plenty of gaps within the research on food allergies, I wanted to share a paper I wrote that discusses the mental health consequences of having and caring for people with food allergies. This is different from my usual blog posts that focus on personal anecdotes and recipes I've created, but I think it's important to use the resources I have to share information that may not be widely known.
It’s a Friday night and you are out to dinner for your friend Alex’s birthday. A large group of you sit around a table in the corner of a high-end Italian restaurant, sipping on cocktails and waiting for the waitress to take your dinner orders. You met Alex in one of your first-year courses and have been friends with them ever since. Although you two have different friend groups, you were excited to be invited to their birthday dinner and get to know some of their friends better, even though you are a little nervous. You were born with a severe dairy allergy and Italian restaurants are notorious for using dairy products like cheese. You’ve told Alex once or twice about your allergy but you don’t think they remember and you don’t want to be a nuisance on their birthday.
When the waitress comes to take orders, you ask to have yours taken last so that you can speak with her about your allergy individually. Alex says, “Oh yeah, I forgot you are lactose intolerant!” Even though you are not lactose intolerant, you are deathly allergic, you laugh it off and explain the severity of your allergy to the waitress. You tell her that you want plain pasta with tomato sauce--no butter, no cheese, or any contamination with dairy products. The waitress assures you that this won’t be a problem and that she will relay the message to the chef. You sit back, relax, and chat with some of Alex’s friends.
The waitress comes back with the food and sets your plate of plain pasta with tomato sauce down in front of you. You take a small bite, testing to see if you feel any tingling or scratching in your throat. For a minute, everything is fine. You take another bite, and suddenly, you feel it. The unmistakable itch as you swallow. You are having an allergic reaction. The pasta must be contaminated with dairy. And you forgot your Epi-Pen at home.
You don’t want to alert the table that you are having a reaction yet. After all, maybe it is just in your head? Maybe you are overreacting. Or, maybe it is a minor reaction that can be cured with just a couple Benadryl. You take a sip of your water and your throat suddenly feels tight, hoarse, and scratchy. You know this isn’t in your head anymore and that you are going to need to go to the hospital, but you don’t want to make a scene in front of all these people you just met, so you wait a couple more minutes. You sit silently at the table, taking nervous sips of your water, seeing how you feel. Five minutes pass and you notice your hands are now swelling with bright red rashes all over your wrists. Finally, you tell the table that you are having an allergic reaction and need to go to the hospital. Most of them think you are joking and do not register the seriousness of the situation until the ambulance comes.
You walk outside and meet the ambulance by yourself. Alex and their friends decide to continue with the dinner and check-in with you later. The paramedics take you on a stretcher to the hospital by yourself, injecting you with Benadryl and epinephrine in the meantime. You are throwing up constantly, struggling to breathe through your swollen throat and nostrils, and watching your fingernails turn blue from lack of oxygen. You feel yourself close to dying and are in a state of sheer panic.
After multiple doses of epinephrine and hours of excruciating pain, you are finally stable. You call your family, who lives far away, and briefly tell them about what happened, trying not to worry them. You were so close to dying and all you want is the comfort of your loved ones, but you are alone.
The next day, you are released from the hospital and back in your apartment. You tell Alex a summary of what happened and they apologize for not understanding the severity of the situation. You say it’s okay, but spend the next week in bed. You fall behind on your schoolwork, have recurring nightmares of your allergic reaction, only eat ramen noodles for weeks, and don’t go out to eat for three months. None of your friends seem to notice anything is wrong, but you can’t help but wonder if this is normal?
This scenario may seem dramatic, but it is the reality that more than 26 million adults with food allergies in America face (Gupta et al., 2019). Most of us know friends or family with food allergies--tree nuts and dairy being the most common ones--but what is less talked about are the consequences of having severe food allergies on one’s mental health.
The Reality of Food Allergies
Food allergies are immune responses to food proteins (Crowe, 2019). To be clear, food allergies are not the same as food intolerances, like our friend Alex in the scenario mistakenly assumed. Food intolerances do not involve the immune system and are reactions to certain non-protein components of a food, like their sugars for example (Crowe, 2019). Food intolerances often involve difficulty digesting a food and are not life-threatening but still are frequently confused with food allergies (Crowe, 2019).
People with food allergies can differ in the severity of their allergy, with some people experiencing itching and hives after ingesting their allergen and others experiencing a severe allergic reaction known as anaphylaxis (Taylor & Lewis, 2018). In our scenario, we experienced anaphylaxis, which is a life-threatening response to an allergen that includes shortness of breath, vomiting, and low blood pressure (Taylor & Lewis, 2018). The immediate treatment for anaphylaxis is an injection of adrenaline, or epinephrine, which is found in prescribed injectable devices like Epi-Pens--in addition to intravenous fluids administered in a hospital to stabilize one’s blood pressure and oxygen levels (Taylor & Lewis, 2018). In our scenario, we left our Epi-Pen at home, forcing us to rely on first-responders to administer the adrenaline--a dangerous mistake that can cost food-allergic people their lives.
The rate of food allergies in both children and adults has rapidly increased in recent years (Feng & Kim, 2019). Recent estimates put the rate of food-allergic children at as high as 8% of all children in the US and the rate of food-allergic adults at 4% of all adults in the US (Feng & Kim, 2019, p. 74). While the reasons why food allergies are becoming so common are up for debate, the fact is that having food allergies impacts one’s mental health (Feng & Kim, 2019). Having food allergies impacts every aspect of daily life, from preparing meals to school and work (Feng & Kim, 2019). People with food allergies are often forced to avoid eating at restaurants, going to social gatherings that revolve around food, attending summer camps, playing sports, and even traveling (Feng & Kim, 2019). Not being able to do the same things as your peers, constantly being on the lookout for danger, and missing out on important aspects of life can be detrimental to your mental health.
Food Allergies & Fear
Living with severe food allergies means dealing with a lot of fear--fear of being exposed to the allergen, fear of the pain and physical symptoms that accompany a reaction, and fear of dying from anaphylaxis to name a few (Taylor & Lewis, 2018). These fears are understandable, considering 9500 children are hospitalized each year for allergic reactions in the US and although rare, dying from anaphylaxis does happen (Feng & Kim, 2019, p. 74). For years, the only treatment for severe food allergies has been to avoid your allergen, carry an epinephrine injector in case you are exposed to your allergen, and hope that you outgrow your allergy one day (Feng & Kim, 2019). In a world where food is a central part of family life, socializing, and even obligations like work, surviving with a food allergy means having to be cautious and aware of your surroundings at all times.
Children with food allergies have a higher rate of hypervigilance, meaning they excessively scan the environment for threats (Feng & Kim, 2019; Wermes, Lincoln, & Helbig-Lang, 2018). From an evolutionary perspective, hypervigilance helped our ancestors survive in tense situations where threats, like dangerous animals, were near (Wermes et al., 2018). However, in this case, the threats in question are allergens that are often difficult to detect and avoid, as we learned from our scenario.
Researchers have found a link between hypervigilance and anxiety, suggesting that food allergy hypervigilance may lead to increased anxiety (Lyons & Forde, 2004). While fear focuses on wanting to avoid danger, anxiety focuses on wanting to avoid an event that could lead to a possible danger (Miceli & Castelfranchi, 2005, p. 294). The understandable fear of dying from an allergic reaction can turn to anxiety when the focus of your fear changes from having an allergic reaction to any situation that could lead you to have an allergic reaction (Miceli & Castelfranchi, 2005). In our scenario, we were afraid of dying once we realized we were having an allergic reaction and this caused us to become anxious about going out to restaurants in the future.
Food Allergies & Anxiety
Constantly avoiding having an allergic reaction is exhausting, with some food-allergic children reporting that the anxiety is more distressing than the actual physical reactions (Fox & Masia Warner, 2017). Understandably, having anxiety about having an allergic reaction can create some unhealthy behaviors and an avoidance of food. In a study on children with either a peanut allergy or diabetes, researchers found that the food-allergic children were more anxious about food, more fearful of negative events, and felt more restricted in general than the children with diabetes did (Teufel et al., 2007). However, this anxiety was lessened when the children with peanut allergies were carrying Epi-Pens (Teufel et al., 2007). This finding highlights the importance of food-allergic people carrying epinephrine auto-injectors for their mental and physical well-being and also demonstrates the severe impact food allergies have on one’s quality of life.
In addition to having anxiety around food, food-allergic people can also suffer from anxiety around social gatherings because of the social nature of food. Having anxiety surrounding food can lead to being anxious about food-related social situations like birthday parties, leading to avoiding these social situations altogether (Fox & Masia Warner, 2017). However, avoiding social gatherings, especially as a child, can lead to worsened social anxiety later in life and difficulty with healthy social relationships (Fox & Masia Warner, 2017). In our scenario, we had to put ourselves in an unsafe environment just to attend Alex’s birthday and get to socialize with them and their friends. While a safer option may have been bringing our own food from home or eating beforehand, eating with others is a shared social experience and it can feel isolating to be the only one not included in that. Although there is no research documenting a strong link between having a food allergy and having social anxiety, there is no doubt that food allergies present unique challenges for socializing and maintaining healthy relationships.
Another challenge that people with severe food allergies face is the potential to develop PTSD, or post-traumatic stress disorder, after anaphylaxis. PTSD is a disorder that can occur after people experience or witness a traumatic event and may involve disturbing thoughts related to the traumatic event, nightmares, and avoiding situations that remind them of the event (Chung, Walsh, & Dennis, 2011). As we learned from our scenario, anaphylaxis is a life-threatening and traumatic event that involves difficulty breathing and a sense of impending doom or a feeling that you are going to die (Chung et al., 2011). In one study of food-allergic individuals, researchers found that 12% of the participants met the diagnostic criteria for full PTSD (Chung et al., 2011). These individuals with PTSD were more likely to use avoidance as a coping strategy, meaning they dealt with their anxiety by avoiding situations that resembled their anaphylactic reaction in some way (Chung et al., 2011). Using avoidance as a main coping strategy can be harmful to one’s mental health in the long run, leading to social isolation and further anxiety about future reactions (Feng & Kim, 2019, p. 75). We saw this in our scenario when we presented some symptoms of PTSD after anaphylaxis by having recurring nightmares of the reaction, avoiding all restaurants for months, and socially isolating ourselves.
Food Allergy Bullying
Although we didn’t experience this in our scenario, many food-allergic people are bullied either by being teased or threatened with their allergen (Feng & Kim, 2019, p. 76). In a recent case, a teenager rubbed pineapple on her hand and then gave a girl with a well-known severe pineapple allergy a high-five, resulting in the girl needing hospital treatment (Feng & Kim, 2019, p. 76). Luckily, the court system took this case seriously and the bully was charged with felony aggravated assault and criminal conspiracy, but many instances of food allergy bullying go undetected and undocumented (Feng & Kim, 2019). Most of this bullying stems from ignorance about the severity of food allergies, which underscores the need for more food allergy education in schools.
Researchers also found that in a study on food-allergic children who had been bullied, only half of them had told their parents about the bullying (Feng & Kim, 2019, p. 76). After sharing their bullying experiences with their parents, the children reported increased quality of life, meaning that they felt their allergy had less of a negative impact on their life in general (Feng & Kim, 2019, p. 76). Creating an open dialogue with friends and family about experiences of food allergy bullying is crucial to improving overall mental health. In our case, although we were not bullied, spending more time sharing our traumatic experience with family and friends or seeking out professional help would have been more beneficial than isolating ourselves in our room for a week.
How Do Food Allergies Affect the Family?
It’s clear that food allergies have a profound impact on the mental health of those who have them, but what about their families? Parents of food-allergic children have to navigate a world where food labels are often misleading, there is a lack of knowledge in the medical community regarding food allergies in general, and there is no cure for food allergies. The burden that food allergies have on the parents of food-allergic children is massive. Researchers have found that food allergy parents reported higher levels of anxiety and depression due to a lack of knowledge on how to treat allergic reactions and hopelessness about their child being able to live a normal life (Feng & Kim, 2019, p. 76). Mothers, in particular, reported more anxiety than any other family member, including their food-allergic child, emphasizing the pressure of being responsible for the safety of their children (Feng & Kim, 2019). In our scenario, we were living on our own and far away from our parents, but you can imagine the stress and helplessness of hearing about your child’s near-death allergic reaction and being unable to do anything about it.
What Can Be Done?
By now, the psychological consequences of food allergies on not only the food allergy-sufferer themselves but their families should be apparent. Increased hypervigilance and fear, anxiety around food, anxiety around social situations, instances of posttraumatic stress disorder from anaphylaxis, food allergy bullying, and heightened anxiety and depression in the parents of food-allergic children emphasizes the far-reaching burden of food allergies. As food allergies continue to rise, we need to find more ways to better support food-allergic people. How can this be done? It all starts with education. Intertwining food allergy education and training into all workplaces, schools, daycares, and university orientations are crucial for not only helping keep food-allergic people safe but increasing a sense of connectedness with others and reducing stigma against food allergies (Feng & Kim, 2019).
While there is still plenty of work to do in terms of finding a cure for food allergies and spreading public awareness of them, it is important for those with allergies to focus on accepting their allergy, sharing their story with others, and finding meaning even in their allergic reactions (Taylor & Lewis, 2018). For food allergy-sufferers with PTSD, it is especially important to take control of their allergy by staying prepared at all times with epinephrine, having a written anaphylaxis treatment plan, and reframing their own story as one of strength, not suffering (Taylor & Lewis, 2018, p. 213).
Now, let’s go back to our scenario. This time, let’s pretend that we are Alex, and our friend with a dairy allergy has just texted us that she is feeling a bit nervous about coming to our birthday dinner because it is at an Italian restaurant. How should we respond? Based on what we know, it is not always easy to talk about a food allergy with others, so we could start by thanking them for sharing this with us. Then, we could ask some questions to get a better understanding of the severity of their allergy. Once we understand how serious their allergy is, we might want to rethink our birthday venue because of how risky the situation is for our friend. Letting our friend know that we care about them, asking them for safer restaurant recommendations, and asking how we can support them are all great ways to make sure someone you know with food allergies feels supported and safe. If our scenario had started with this open conversation, it could have gone much differently.
References
Chung, M. C., Walsh, A., & Dennis, I. (2011). Trauma exposure characteristics, past traumatic life events, coping strategies, posttraumatic stress disorder, and psychiatric comorbidity among people with anaphylactic shock experience. Comprehensive Psychiatry, 52(4), 394-404. doi:https://doi.org/10.1016/j.comppsych.2010.09.005
Crowe S. E. (2019). Food Allergy Vs Food Intolerance in Patients With Irritable Bowel Syndrome. Gastroenterology & hepatology, 15(1), 38–40.
Feng, C., Kim, J. (2019). Beyond Avoidance: The Psychosocial Impact of Food Allergies. Clinical Review of Allergy & Immunology, 57, 74–82. https://doi-org.myaccess.library.utoronto.ca/10.1007/s12016-018-8708-x
Forde, E. M. E., & Lyons, A. C. (2004). Food allergy in young adults: Perceptions and psychological effects. Journal of Health Psychology, 9(4), 497-504. Retrieved from http://myaccess.library.utoronto.ca/login?url=https://search-proquest-com.myaccess.library.utoronto.ca/docview/57043529?accountid=14771
Fox, J. K., & Masia Warner, C. (2017). Food allergy and social anxiety in a community sample of adolescents. Children’s Health Care, 46(1), 93-107. doi:10.1080/02739615.2015.1124773
Gupta, R. S., Warren, C. M., Smith, B. M., Jiang, J., Blumenstock, J. A., Davis, M. M., Schleimer, R. P., & Nadeau, K. C. (2019). Prevalence and Severity of Food Allergies Among US Adults. JAMA network open, 2(1), e185630. https://doi.org/10.1001/jamanetworkopen.2018.5630
Miceli, M., & Castelfranchi, C. (2005). Anxiety as an “epistemic” emotion: An uncertainty theory of anxiety. Anxiety, Stress, & Coping, 18(5), 291-319. doi:10.1080/10615800500209324
Taylor, J. Z., & Lewis, C. L. (2018). The shared emotional themes of illness and anaphylaxis. Family Journal, 26(2), 208-216. doi:http://dx.doi.org.myaccess.library.utoronto.ca/10.1177/1066480718777410
Teufel, M., Biedermann, T., Rapps, N., Hausteiner, C., Henningsen, P., Enck, P., & Zipfel, S. (2007). Psychological burden of food allergy. World journal of gastroenterology, 13(25), 3456–3465. doi:10.3748/wjg.v13.i25.3456
Wermes, R., Lincoln, T. M., & Helbig-Lang, S. (2018). Anxious and alert? Hypervigilance in social anxiety disorder. Psychiatry Research, 269, 740-745. doi:10.1016/j.psychres.2018.08.086