A story of navigating multiple food allergies in a culture where food means “I love you”
By: Kathryn Hong
What it means to be Chinese with shellfish, seafood, sesame, tree nut, peanut, apple, pear allergies
SIZZZZZLE FIZZZZLE! A loud crackle, like when a baseball hits a wooden bat, echoed through the kitchen. The scent of onion tickled my nose as the raw slices hit the hot wok, holding the soon-to-be batch of wide rice noodles that my Ying Ying (Grandma) was cooking.
As the granddaughter of Chinese immigrants, I grew up at the end of a restaurant era in the Midwest. My grandparents established three full-service eateries over the span of sixty years, contributing Chinese American cuisine to Detroit’s multiethnic community. The sounds and smells of my childhood included the steady rhythm of a knife hitting a cutting board, the aroma of seafood, and five-spice powder.
Growing up within East Asian American culture meant my family valued service and collectivism. Collectivism, the idea of prioritizing the whole group rather than the individual, plays a role in decisions and conversations. Affection, both physical and verbal, is hardly displayed; rather, care is demonstrated through actions or attitude.
Oftentimes, these values intersect at the table during mealtime. Sitting at a round table to eat “family style” off a lazy susan meets a basic need as well as how one experiences social connection. Statements such as “Eat more” or “Are you hungry?” are commonly heard expressions.
Through food, the message “I love you” is communicated.
Living within a culture where food means “I love you” complicates my food allergy journey. As I advocate for myself, it has become a juggling act because I am learning to navigate conversations that are laced with cultural undertones while prioritizing my safety. Especially since my set of allergens is commonly used in my culture’s traditional diet.
Re-learning “how to adult” after my allergy diagnosis
My food allergies began in high school when I was diagnosed with oral allergy syndrome to peanut and tree nut. As a precaution, I was given an epinephrine auto-injector (otherwise commonly known as an epi-pen) but never needed to use it. It was only when I attended a Chinese wedding reception serving traditional Asian delicacies, which included shellfish, seafood, sesame, and peanut, that I had to use both epi-pens and rush to the emergency room due to unexpectedly experiencing anaphylaxis.
The forthcoming diagnosis of life-threatening food allergies to shellfish, seafood, sesame, and peanut, initially shattered my world. I began “relearning how to adult” as I could no longer eat everything in front of me without worrying anymore. I was now asking questions before I put anything in my mouth.
I felt overwhelmed and disoriented as I learned the necessity of asking how a meal was prepared, taking time to read ingredient labels, or realizing the underlying complexity of a restaurant kitchen, knowing that fryers, grills, and toasters were often contaminated with rotations of fish, chicken tenders, bread, and french fries.
Cultural Impact of Food Allergies
This shift in lifestyle helped me see that the trajectory of my life was changing. But where I felt the weight of this new reality was in my self-perception as it related to my family and my culture.
Food allergies' impact on me
Words between my grandmother and I were far and few between due to a language barrier, yet we always connected through her cooking or peeling shrimp side-by-side at the industrial restaurant sink.
So the reality of that being taken away as I adjusted to my new “norm” resulted in feelings of anxiety, anger, sadness, and rejection. I was mourning not only the loss of certain freedom but also an aspect of my ability to identify with my heritage.
Food allergies' impact on my family
Thanksgiving was the first holiday to pass after my anaphylactic reaction. Our longstanding family tradition had been for the main course to be a Chinese marinated turkey with ground bean sauce stuffed with potatoes and other vegetables -- my Bok Poa (Great-Grandma)’s recipe.
But we discovered that the ground bean sauce had sesame as one of its ingredients. I sat at the kitchen table crying because it was discouraging to discover that sauces and curries typically used in traditional dishes also contained my allergens. It only deepened the alienation that I felt.
The cultural value of connecting around the table through food was shifting for my family because of my food allergies. Changing recipes and changing traditions is necessary for my safety but accepting this reality is something I am wrestling with because of our collectivist nature.
Food allergies' impact on my friends
Now any conversation with family and friends carries an added layer of personal stress due to not wanting to be disrespectful or a burden to those providing food for me.
For instance, pointing out to a family friend that rinsing a spoon without being washed with soap after it had stirred the congee (rice porridge) containing oyster sauce and peanuts -- is dangerous, sparked self-inflicted resistance as I knew I had to challenge cultural norms in order to stay safe. Because “making waves” or contradicting those who are older can be perceived as rude, even inciting shame.
I am constantly emphasizing “It’s not that I don’t want to try the dish or don’t appreciate your efforts, it’s just that I can’t. It’s not safe.”
While I do not want to break trust with these individuals, I also do not want to take the additional risks because I know the severe consequences of having an allergic reaction. As a result, I have had to learn the delicate balance of respectfully setting boundaries while being mindful of the values, traditions, and history that someone may possess.
B.R.I.G.H.T: Changing the conversation
When I advocate for myself in these scenarios, I choose to practice the B.R.I.G.H.T. approach in conversation.
B.R.I.G.H.T. is a mixture of strategies and questions that my family and I have compiled throughout my food allergy journey as we strive to build a family culture rooted in the values of service and faith. We looked to my grandmother for inspiration whose path of facing a war, economic struggles, and establishing herself in a new country, modeled resilience amidst challenges.
We find these strategies helpful for both those with food allergies, and those who are helping to advocate for a loved one with food allergies when navigating food allergy conversations with people of different backgrounds.
BUILD: building trust
Am I building trust or breaking trust: with my decisions? with how I explain my boundaries? with my word choice?
Am I maintaining trust by practicing other cultural customs or traditions?
REACH: reaching for more information
Do I seek to learn more about those around me and other cultures?
Do I keep in mind that -- “ I am the expert of my food allergy journey but am not the expert on other cultures or someone else’s experiences”?
What are ways that I can find out more information about a culture if I cannot have the food? Remember culture is more than food alone and food allergies do not define an individual.
What are other traditions that I can try and learn about?
What are other ways that family and friends can be inclusive?
Am I asking questions to learn more about how to care for someone with food allergies?
INVITE: intentionally invite others to join you in the advocacy process
Are there other ways I can practice advocacy by being involved with the food allergy community?
Am I promoting ways for others to get involved?
Am I sharing resources I have found about food allergies and teaching others how to use them?
GRACE: Grace to yourself and grace to others
Be aware of the other person in the conversation and decide when to engage, when to educate, when to listen, and when to step back
Boundaries might be awkward to vocalize but are necessary for safety
Be kind to yourself because the food allergy journey is a growing process
HOSPITABLE: When practicing hospitality, create safe spaces for yourself and others
When I am invited to eat with someone, do I communicate my food allergies and tips for creating a safe space ahead of time?
Do I think about the food allergy perspective when hosting or organizing an event? How can I be inclusive of allergies and respectful of boundaries?
TEAM: Be team-oriented. Find allies who offer support and encouragement
Create a team. Identify who are those that I can trust with my food allergies?
How can I be collaborative?
The stress and complexity of the food allergy experience is not meant to be carried alone.
By creating B.R.I.G.H.T. and putting its strategies into practice, my family has found ways to be more intentional when advocating for my food allergies. Working through these questions has helped us create spaces for conversations to occur. Through these conversations and acts of service, deeper connections between us have formed. But we know that our story is one of many in the allergy community. That there is still much to be done as allergy advocates and life-long learners in order to create an inclusive society.
So, we would love to hear from you to learn more about what has been helpful for you and your family be successful on the food allergy journey. How has food allergies impacted your family culture? What are ways your family has adapted to create a safe, inclusive environment? And if you try one or all of the B.R.I.G.H.T. strategies, let me know how those conversations went!
