RESOLVE TO ADVOCATE
Don’t get stuck in the mindset that nurses are only at the bedside—try something new or trail-blaze your own path.
We interviewed Susan Kelly, allergy and immunology nurse, advocate, and former VP of Education for the national nonprofit allergy organization FAACT, The Food Allergy & Anaphylaxis Connection Team. She is currently pursuing her master’s degree in public health from Hofstra University. Her nursing career includes nine years of clinical work in the hospital setting, along with five years in private practice for an allergist and immunologist. Susan identifies her greatest achievement as being the mom of four amazing daughters and raising them with her "never-boring" Irish husband.
Ignite:
Where are you from and what drives your passion to be in nursing?
Susan:
I grew up in a small town in southern New Jersey. When I was in high school, and unsure of what I wanted to study in college, a dear family friend thought I might enjoy being a nurse. As the director of nursing at a teaching hospital, she graciously arranged for me to shadow a new graduate nurse for a day. This experience opened my eyes to the profession of nursing. After that day, I knew I wanted to be a nurse.
Ignite:
Can you guide us through the process you traversed to get to where you are today in your career?
Susan:
As soon as possible, I went to work in the field. The summer after my sophomore year in college, I worked as a nurse’s aide at a nursing home. That was a heavy job, physically and mentally. I made a promise to myself to always value, support, and help nurse’s aides during my nursing career. This work is the heart of humanity, caring for people at their most vulnerable moments. It is sacred and important.
The summer after my junior year, I was accepted into a nurse extern program at a teaching hospital. I worked alongside a critical care RN in a medical ICU. I learned so much that summer! It was invigorating and remains a treasured memory. Near the end of my senior year of college, I accepted a position as a nurse in general medicine at NYU Medical Center, now NYU Langone Tisch Hospital, in their inaugural nurse residency program. I will never forget my first job as a nurse or the staff of our unit. We truly depended on one another. It was a challenging time. Being a nurse resident was a good way to feel supported and mentored during the stressful transition from nursing student to registered nurse.
I worked for two years at NYU and decided to move to Boston, Massachusettes. I took a position at Beth Israel Deaconess Medical Center (BIDMC) as a clinical nurse in interventional cardiology, and then in the medical ICU. Boston was an exciting place to be a nurse; immersed in the environment of the Harvard teaching hospitals, cutting-edge research, and world-renowned experts. Nurses were at the core of the culture of BIDMC. The voice of the nurse mattered and was heard. Nurses were expected to hold a primary role in the patient’s care team. Our work was collaborative. We worked with an interdisciplinary care team. Working at BIDMC was fulfilling. There was room to grow, opportunities to learn, and leadership experiences to explore. In a full circle moment, I was selected to serve as a mentor for a new graduate nurse as she completed her two-year nurse residency program. We remain in contact, twenty-three years later!
My personal life evolved. My boyfriend from college and I decided to get married. His job transferred us to Long Island, New York. I had to say goodbye to my amazing BIDMC colleagues. When we moved to Long Island, St. Francis Hospital & Heart Center was right down the road. It was a good fit for me, since I had become quite knowledgeable in the field of cardiology. I began working in the emergency room. Thanks to my experiences, I knew how to advocate for my patients, provide excellent critical care, read lab values, interpret ECG’s, monitor telemetry, coordinate efforts to get a patient to the Cath lab in record time, as well as jump into action during a code. Those seven years of working at two major teaching hospitals prepared me well for the ER! I went from novice to expert. I loved being a bedside nurse. I thoroughly enjoyed all of the clinical areas in the hospital to explore as a nurse.
Our married life was happy and balanced. We were expecting our first baby. I worked until I was thirty-six weeks pregnant. At that point, I was too large to fit in between the stretchers in the emergency room and was unable to stand for twelve hours on my feet. My daughter was born four weeks later. I had this idealistic plan that I would nap with my baby during the day and work in the ER at night. That backfired. She never slept, and neither did I. About six months after she was born, I made the difficult decision to resign from my job and stay at home. I felt like I had given up on my career, but this was ultimately the best decision for our young family. We were relatively new to Long Island and didn’t have much support. In retrospect, I wouldn’t change a thing. Life has a plan, even if you don’t know it. Over the next eleven years, we had three more children. I thoroughly enjoyed having the ability to give my children the very best of me as their mom. My four girls are incredible human beings and my greatest achievement. Being a nurse also helped me be a great mom!
I pivoted from the traditional role of the bedside nurse to a nurse advocate and educator during my time as a "stay at home mom." It wasn’t by choice. It was out of necessity. When my second child was fourteen months old, she had her first anaphylactic reaction to a bite of a peanut butter and jelly sandwich. She was later diagnosed with multiple food allergies. Even as a nurse, this was a major learning curve and adjustment for me as her mom. This diagnosis required major lifestyle and behavior changes to safely feed my child. I had to find a new normal for my family. I was shocked at what I had to do to keep her safe, as well as how to teach her to stay safe, in an age appropriate way. It was hard for me to wrap my head around the fact that one bite of the "wrong" food could take her life. When I left the allergist’s office after her diagnosis, I felt alone and afraid. I sat in my car and cried, looking back at my little girl in her car seat, so young and vulnerable. This was a turning point in our family.
In order to keep her safe and included in life, as she went from toddler to preschooler, I had to educate everyone who would care for her. Sending her off to school was completely overwhelming. I remember feeling grateful for my nursing background. I had the knowledge and ability to advocate for her needs with evidence-based information, so people would take her diagnosis seriously. With a plan in place, she could safely attend school. I don’t know how parents of children with food allergies do this without a medical background. It’s a heavy burden to carry; however, we found our groove and settled into new routines, leaning on our support system and learning along the way.
A few years later, a fourteen-year-old boy in our neighborhood died from anaphylaxis caused by his peanut allergy. It was absolutely heartbreaking. The nurse in me felt a deep obligation and responsibility to help others understand and navigate this diagnosis. With the right education and support, these deaths could be prevented. Food allergy and anaphylaxis training saves lives. Food allergies are a poorly understood public health issue. This was important and urgent work. I stepped out of my comfort zone and began advocating for the entire food allergic community, while also educating the public. My education and work experience, as well as my lived experience as a mom of a child with food allergies, enabled me to become a changemaker, patient leader, and food allergy advocate. I learned all I could about this topic, studying research articles and finding credible resources. I attended medical conferences, workshops, and webinars. When you find your passion, you find your purpose.
I was on a new path; one I never expected. I realized there are so many ways to be a nurse. I harnessed the power of social media to connect with experts in the field of allergy and immunology, families managing this diagnosis, national allergy organizations, community leaders, and politicians. At the encouragement of others in this space, including a physician and fellow food allergy mom, I used my social media platform to educate the public on the seriousness of food allergies, while also supporting the food allergic community with evidence-based information. I began speaking to groups at libraries, schools, churches, a pediatric practice, and the media. I started a blog and began writing. I’ve written for Allergic Living Magazine, created educational content for a national allergy organization, and have written for other bloggers and nurses. I became a trusted resource in the community where I live, receiving the Citizen of the Year Award and serving as our town’s Health and Wellness Chairperson. I have advocated for food allergy and anaphylaxis related policy and legislative changes at the local and state level with success. I continue to empower families who are raising children with food allergies. Alongside my beautiful friend, the mom of the fourteen-year-old boy who died from anaphylaxis in my neighborhood, we co-lead a support group on Facebook called, "Friends Helping Friends Food Allergy Support Group." We also hold workshops and events for families managing food allergies on Long Island.
Ignite:
How do you encourage innovative ideas?
Susan:
There is a real need for nurses in the field of allergy and immunology to support, educate, and coordinate care for this population, including nutrition and mental health support. Many people speak about a gap between leaving the allergist’s office and learning how to live safely and fully with this life-altering diagnosis. Even I experienced this gap as I mentioned above. Nurses are underutilized in this role. I believe nurses can fill this gap and make a tremendous difference in the quality of life for the food allergic patient population. I have a vision to develop a curriculum to certify nurses as Food Allergy Nurse Educators, or Allergy Nurse Educators, much like the positive role the Diabetes Nurse Educator has for the diabetic population.
Ignite:
Do you have a mentor?
Susan:
I have several, from the nurse who introduced me to this profession way back in high school, to a small group of nurses who share this same passion. We started The Food Allergy Nurse Interest Group. We are a group of nurses who meet monthly on Zoom. We either work in allergy and immunology, live this patient experience, or both. We have members who are PhDs in nursing and DNPs, who are also professors of nursing from academic institutions across the United States. Our group provides professional connection and inspiration for creative and meaningful work in our shared area of interest.
Ignite:
Can you recommend a book or resource for building a particular strength or skill-set that you find valuable?
Susan:
I strive to be an authentic leader and am motivated by Brené Brown and her book, Dare to Lead. If you want to learn about food allergies and anaphylaxis, there are several national nonprofit allergy organizations I recommend including FAACT, FARE, Kids with Food Allergies Foundation, and the Allergy and Asthma Network. The American Academy of Allergy, Asthma & Immunology and the American College of Allergy, Asthma & Immunology are trusted medical resources. Allergic Living Magazine is an easy-to-read and credible source of information. All of these resources are found online.
Ignite:
What do you do to challenge your practice?
Susan:
Beginning graduate school for my MPH during this pandemic, while raising four kids and a puppy, was probably the most daring thing I’ve ever done! I am constantly reading the latest published research articles, attending online webinars, and listening to the needs of the food allergic community. I also served as a vaccinator against COVID-19 with our county’s Medical Reserve Corps (MRC). I wanted to help stop this pandemic and support my fellow nurses. Volunteering as a vaccinator was an extremely rewarding experience, while also connecting me to our county’s Department of Health.
Ignite:
How do you navigate feeling nervous speaking to groups?
Susan:
Almost everyone I know feels nervous before a speaking engagement. I channel my nervousness into excitement. Long before the event, I research and prepare. Who is my audience? What am I trying to achieve in the allotted time? How can I make this relatable? That’s my framework. I practice, and then practice some more. I prepare for any technical glitches. I visualize myself giving the talk and cheer myself on. When the time comes, I’m ready! This has always worked for me. If I make a mistake, I pick up and move on. We have to keep a sense of humor and humility. My goal is to be real, relatable, and to leave the audience with a sense of warmth and memorable stories to learn from.
Ignite:
If a nursing student approached you and asked for your advice, and you had just a few moments to engage with them, what would be your best tip?
Susan:
Find a mentor or someone to look up to in this profession. Stay curious. Ask questions. Ask why. Listen and learn from the patient’s lived experience. Remember, there are so many ways to be a nurse. Don’t get stuck in the mindset that nurses are only at the bedside—try something new or trail-blaze your own path. Don’t be afraid to fail. Most importantly, keep learning new information and share it with others in the profession and beyond. You have a powerful voice as a nurse. Make it count!
Connect with Susan
Susan can be reached via Twitter @SHeimKelly and Instagram @SusanKelly_RN. She is also active in the Facebook communities "FoodAllergyLife" and "Friends Helping Friends Food Allergy Support Group," and regularly contributes to her blog at Food Allergy Life. Susan can be found on LinkedIn as Susan (Heim) Kelly, BSN, RN.