‘More than just a positive test’: Psychosocial aspects of food allergies
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Editor’s Note: In Healio Allergy/Asthma’s column, “Food Allergy: Fact vs. Fiction,” Douglas H. Jones, MD, breaks down what’s true and what’s myth for a variety of topics related to food allergies. If you have a question you would like answered in this column, email Jones at rmaaimd@gmail.com or Sasha Todak at stodak@healio.com.
Recently, there have been three tragedies involving people who had food allergies that have been publicized on social media and national news.
My heart goes to those families and all involved. It is the worst-case scenario. Even one instance of this is too much.
‘Be prepared and not scared’
I am often asked by parents and patients, “How severe is my food allergy? What precautions do we need to take? Is a little bit OK?”
I can’t emphasize enough to parents, grandparents, friends and anyone involved the seriousness of food allergies. I always tell my patients, “With food allergy, we need to be like the military and prepare for worst-case scenarios and not the most-likely scenarios. Be prepared and not scared.” Parents and food-allergic patients will live a life of preparing for worst-case scenarios to avoid the dreaded “one time.”
What kind ramifications does this have on the patient and those involved? Before answering that, let me ask some another questions.
How did the world respond to something microscopic, such as SARS-CoV-2, that could be potentially life-threatening? What measures were taken? What kind of paranoia ensued? How much misinformation and division were created? How many businesses and people looked at it as an opportunity to capitalize independent of the validity of the product? How politicized was the issue? How many people became “experts” whether they were or not? How difficult was it to find reliable information and resources? Welcome to the world that someone with food allergies endures daily.
Those with food allergies are well-adept to isolation (social and physical) and being excluded from parties and social events. They are bullied and must deal with flight and restaurant restrictions. They must think about everything they are exposed to. They are subject to more misinformation, bad tests and fake experts than they are reliable information, effective tests and real experts. All they want is to have a treatment and feel a sense of normalcy. Sound familiar after going through the pandemic?
Mental, emotional tolls
The psychosocial impact of food allergy is real.
In a well-done study recently published in The Journal of Allergy and Clinical Immunology, Cushman and colleagues found that quality of life and anxiety were the two things most affected by food allergy for both patients and caregivers. Pediatricians should be aware of these effects and screen for anxiety and assess quality of life among both the parents and their children.
I have evaluated and treated thousands of patients with food allergies for longer than a decade. The mental and emotional impact of food allergy has been the most influential part of being involved with these families and patients.
At first, I was focused on helping patients eat foods safely and trying to normalize their life as much as possible. Going through this process was eye-opening to me. As I observed patients progressing through the treatment, something beautiful happened. I saw personalities emerge, dreams being dreamed, and a change in the patient and their families. I didn’t realize the burden (mentally and emotionally) they were all carrying until it was lifted from them. I understood that treatment of food allergies was more than a physical routine of getting people to eat foods. It was a life-altering process that was helping patients truly live.
It is more than a positive test. It is more than use of epinephrine (although, never delay giving epinephrine in a reaction). Although ED visits are important, it is bigger than that, much like SARS-CoV-2 is so much more than positive tests, ED visits and hospitalizations. The impacts expand to include collateral effects, the damage of the virus and our response. There are social, mental, emotional, physical, spiritual and financial ramifications — for both COVID-19 and food allergies.
Be mindful of and compassionate to those around you who suffer from life-threatening food allergies. Do not blame them. Do not criticize them. Do not mock them or bully them.
First, seek to understand. Have compassion. Make sure they are seeing a true specialist in food allergy. Be aware that treatment is available. Many are unaware of the advancements in the food allergy space and that they may be able to take measures through a process called oral immunotherapy, or OIT, to minimize their risk for severe, life-threatening reactions. Patients and families can take control and be proactive in their approach instead of waiting, worrying and reacting.
There is hope. There can be a plan. There can be dreams. There can be normalization. There can be lives truly lived.
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For more information:
Douglas H. Jones, MD, FAAAAI, FACAAI, is cofounder of Global Food Therapy, Food Allergy Support Team and OITConnect, the director at Rocky Mountain Allergy at Tanner Clinic, and a Healio Allergy/Asthma Peer Perspective Board Member. He can be reached at rmaaimd@gmail.com or on Instagram @drdouglasjones.