The Food Allergy Diagnosis: Grieve then Move Forward
Your world can close in when you get a food allergy diagnosis. You sometimes grieve for the life you used to have. There's no way around it. Learn more...
Allergy Force recently caught up with Susan Kelly, BSN, RN, MPH-candidate, writer, public speaker, food allergy advocate and co-leader (with Georgina Cipriano) of the popular Friends Helping Friends Food Allergy Support Group.
As members of the Friends Helping Friends Food Allergy Support Group, we were curious to learn more about this knowledgeable support group leader who radiates such kindness, warmth and welcome to Group members. We wanted to learn more about her work on behalf of the food allergy community.
Her food allergy journey…it began on a rowboat
Imagine being in a row boat crabbing on a bay with your 14-month-old daughter. Imagine giving her a Reese’s Peanut Butter Cup to quiet her fussing, when she’d never even tried a peanut. That’s what Sue Kelly’s dad wanted to do. But, Sue’s maternal and nursing-instincts kicked into overdrive and she stopped him. She recounted, “He rolled his eyes, made a face and thought I was crazy.”
Fast forward a few months, and Sue’s youngest daughter had her first serious allergic reaction to a bite of her 3-year-old sister’s peanut butter and jelly sandwich. “Thankfully we were at home, within easy reach of an ER,” recalls Sue, “…and not in a rowboat on the bay!”
After seeing a board-certified allergist recommended by her pediatrician, her youngest daughter was diagnosed with peanut, tree nut and sesame allergies. The list grew even longer with the addition of soy when her daughter was 5.
“My world turned upside down.”
Several months later, her oldest daughter had terrible stomach problems. Between her two little girls, they were bouncing between doctors’ appointments, procedures, testing and specialists. “I was completely overwhelmed,” Sue remembers, “and thought I was losing my mind.” Her oldest daughter was eventually diagnosed with Eosinophilic Esophagitis (EoE)
Sue is a registered nurse — with 9 years of experience in major teaching hospitals in the Northeast in general medicine, interventional cardiology, the electrophysiology lab, and the medical ICU. Her last nursing job, before deciding to be a stay-at-home mom, was in the ER. Even with all her nursing education and experience, she’d learned very little about food allergies and their relation to anaphylaxis. This made her angry. She’d never even heard of EoE until her oldest daughter's diagnosis. After getting the diagnoses for both of her girls she had to relearn how to feed her children, and teach others how to keep them safe.
“A food allergy diagnosis touches and changes everything in your life.”
“I felt like my world was closing in on me,” Sue remembers. The most challenging aspect of her food allergy and EoE journey as a parent was her own acceptance of her children’s diagnoses. “I finally realized I was grieving,” she recalls, adding “there was no way around it…only through it.”
Sue was only able to process her difficult emotional response when she realized she was grieving over the loss of the life she’d lived prior to the diagnoses — navigating playdates, holiday celebrations, family vacations, restaurant outings, preschool and camps…it would all have to be rethought, recalibrated, reconfigured to keep both her children safe.
It’s important for parents and children to understand that grief is a normal emotional response to loss. People need to be supported through their grief. Meeting other families managing food allergies and doing well helped Sue and her family find hope. It helped Sue and her family to quickly adapt to their new way of living and roll with the punches.
“…maybe I could change the local landscape to be a more inclusive, empathetic and allergy aware space…especially in school settings.”
Along the way, Sue met inspiring people who pushed her to speak up and educate. Her own child’s allergist, as well as teachers and parents she met, motivated her to tap her love for writing and public speaking and draw from her nursing background to advocate and educate. A private person by nature, Sue thought, “If I could be brave enough to leverage my professional knowledge, along with sharing my personal food allergy mom story, then maybe I could change the local landscape to be a more inclusive, empathetic and allergy aware space—especially in school settings.”
In 2013, Sue’s Long Island community experienced a tragic loss. 14-year-old Giovanni Cipriano died from anaphylaxis after unknowingly eating food that contained peanuts. His death hit close to home, moving Sue to attend his funeral mass. As a nurse and food allergy mom, it was clear to her that she had a responsibility to help prevent another person, another child, from dying from anaphylaxis. Giovanni’s death was her turning point.
She shares, “Giovanni’s death pushed me out of my comfort zone, and I found the courage I needed to ramp up my advocacy efforts.”
Her advocacy work grew over time.
The local assemblyman from her district asked her to speak at a public food allergy awareness forum at the local library. It was televised, spreading the word further afield. She was then invited to present at other forums and visit schools. She began connecting with school nurses, working to gradually change schools’ allergy responsiveness. Through educating friends and family, and then later teachers, school parents and the public, Sue became a trusted food allergy resource in her community.
Sue resumed her nursing career in 2015, working for her child's allergist, giving allergy shots and helping families who needed additional food allergy support and resources.
Out of sadness and loss, something beautiful…
Following Giovanni’s death, Sue reached out to his mom and a special friendship began. Sue shares, “Georgina has referred to our friendship as collateral beauty. Out of such tragedy, our beautiful friendship formed. It’s an honor to stand by her side, bear witness to her loss, advocate, educate and help other families not only persevere, but thrive with food allergies.” Georgina invited Sue to-co-lead the FAACT-recognized food allergy support group, Friends Helping Friends.
Co-leading the Group has been a true labor of love. Through her work with the Friends Helping Friends Food Allergy Support Group, it’s Sue’s hope that families can find the support and evidence-based educational tools they need to live safely and to the fullest, even with food allergies.
“... not only survive, but thrive.”
Since her daughter was first diagnosed with food allergies in the early 2000,’s, Sue has learned some important lessons. When you’re hit with a food allergy diagnosis, there are things you can do, not only to survive, but to thrive. Sue suggests:
1. Find an allergist who will work well with you. It was important to Sue that her allergist was someone who connected well with her and her small child. It was important for Sue that her family’s allergist would develop a food allergy management plan that would work well for her child and her family. It was also important to Sue that her allergist was someone who was available for questions, who listened to her concerns and could provide referrals for nutrition and mental health support, if needed.
Don’t be hesitant to change doctors if you feel your needs are not being addressed the way you want them addressed. Be patient as it may take a couple of tries to find the right allergist.
2. Allow yourself time and space to grieve after you get the diagnosis. You may grieve for the loss of the life you led pre-diagnosis. It’s ok. It’s normal to deeply feel a sense of loss. Everything changes after that diagnosis. It may help to speak with someone (e.g., a trusted friend, another allergy mom, a professional therapist) who can support you through this grieving process.
Move forward. Move through it. Then settle into your new reality.
3. Get smart about food allergies. Learn how to read an ingredient label. Learn about cross contact and high-risk foods to avoid. Know how and when to use your child's prescribed epinephrine. Be familiar with and follow your child's allergy and anaphylaxis management plan. Make sure you use credible sources of information to climb the learning curve. You can increase your Food Allergy IQ by tapping into excellent educational resources for newly diagnosed families from FAACT, Allergic Living Magazine, Kids with Food Allergy Foundation, Allergy & Asthma Network, and FARE. Information gathered from Facebook group chats or from internet searches may not be the most up-to-date or the most reliable information. Try to stay fact-based.
Learn, learn, learn…
4. Get even smarter about food allergies. Read up on food allergies. If you’re looking for some helpful reads, Simone Albert, a wellbeing expert, counselor, speaker and nurse, wrote ‘Beyond the Allergy Diagnosis: A Guide to Navigating and Understanding the Emotional and Psychological Phases of Allergies’ — a book that’s quite helpful. You might also want to take a look at the book by Dr. Scott Sicherer, MD, who heads up Mount Sinai’s Elliot and Roslyn Jaffe Food Allergy Institute, ‘Food Allergies: A Complete Guide for Eating When Your Life Depends on It’. If your child is headed to preschool, Gina Minnett, M.Ed, and Laurel J. Francoeur, Esq. co-authored the ‘Preschool Food Allergy Handbook’ — a book that can provide helpful insights as you launch your little one with food allergies into preschool.
…and learn more!
5. Gradually empower your kids with responsibility for managing their own allergies. This is a long road, travelled over time. To get started, there are some sweet books that can support your teaching efforts: Take a look at ‘Mighty Jax’ the superhero from Mightiest Me, ‘HumFree the Bee has a Food Allergy’ and ‘The No Biggie Bunch Everyday Cool with Food Allergies’ . FAACT offers a ‘resiliency kit’ that helps kids learn to bounce back from setbacks and learn flexibility in an age appropriate manner.
With education and support, you can raise a child with food allergies who is responsible and resilient!
6. Don’t forget to count blessings. Food allergies don’t define you. Nor do they have to limit the life you lead. They teach you to get creative figuring out solutions and workarounds. They teach you caution and self-control. They teach you resilience, and help you find your bounce after setbacks and adversity. They teach you about empathy and kindness towards others. They teach you about gratitude for little kindnesses others show to you. They teach you how to work with different kinds of people, how to build allies and choose true friends.
There are hidden blessings in life with food allergies. Sometimes you just need to reframe how you’re looking at things to find them.
7. You will find your stride. It may take a little time, but you will find your footing on the uncertain terrain of allergic living and gain confidence in your ability to keep your food allergic loved ones safe.
Reaching out for support and guidance from the food allergy community can definitely ease the journey. The Friends Helping Friends Food Allergy Support Group is just one community that’s there for you when you need a helping hand, but there are many others.
Thank you, Sue Kelly, for your tireless efforts over the years to make the journey through life easier for families managing food allergies. Your warmth, kindness and generosity to others are an inspiration for all of us. Visit Sue's blog to learn more.
“Joy is what happens to us when we allow ourselves to recognize how good things really are.” —Marianne Williamson
The Allergy Force Changemaker Series shines a light on movers and shakers in the food allergy community who drive change and make a positive difference for the entire community.
Image Credits: Thank you to sos8_6 from Pixabay and to Susan Kelly for use of the images.