The expression, “When life gives you lemons, make lemonade,” encourages optimism and positivity in the face of life’s challenges. For sure, the diagnosis of diabetes can be a life challenge. For this blog series we profile people with diabetes who’ve squeezed lemons from the diagnosis of diabetes and made lemonade - they exemplify this expression. This profile features Nicole Johnson, DrPH, MPH, MA, a person who has lived with diabetes for 27 years and truly epitomizes how lemonade can be made from the diagnosis of diabetes. Nicole embraced the platform of diabetes as she competed in the Miss America competition that led up to her being crowned Miss America 1999. You’ll discover how, two decades later, Nicole continues to dedicate her life to improving the lives of people with diabetes in many ways.
I was 19 years old, a college student and just beginning to discover and dream about what life had to offer, when, after being misdiagnosed many times, I was diagnosed with type 1 diabetes. Ironically, the night before I was taken to the ER for what was thought to be a bursting appendix, I was in one of my first local Miss America preliminary competitions. After seven days in the hospital, I was sent home with a new reality and huge learning curve. I had never known anyone with T1D. One piece of advice I received in the hospital was to drop out of school and move home with my family. I did, but that didn’t last long as I was too independent! My family and I quickly learned that diabetes was far more than a physical condition. We realized that emotional and psychological challenges compound the struggles. It took me time to grieve and grasp what life could be. I’m thankful for family and faith, as they helped me realize that I was made for more than struggle. I came to realize that I have an overcomer’s spirit.
Today, I wear a t:slim X2 pump with Control-IQ technology. It has been a revolutionary tool for me. My diabetes has never been under better control. I feel more stable and confident than I ever have. There are hard days, but I know I have the best possible tools to help me achieve my goals and dreams. When I’m not working full time, diabetes is still my constant companion. My 14-year old daughter is my biggest champion. She and I are lucky to live in Florida. The weather allows us to stay very active. Every night we do some activity outside, which is a big blessing to my diabetes care. Activity helps keep my glucose levels in my target range…and my pump with Control-IQ technology helps keep me from going too low! My daughter, who will start high school in the fall of 2020, has such a sweet, nurturing spirit, which I believe comes from living with my diabetes her whole life. She assumes a caretaker role when I need support or help. It is heartwarming to see something so challenging reap such positive life benefits. I am excited to see where life leads her and how her experiences with diabetes will shape her choices.
It was an interesting time in my life. Being diagnosed with T1D at around the same time made the two very intertwined for me. At diagnosis I was told by healthcare providers, “You should never be in a pageant again because you can’t handle the stress.” This just made me more committed to prove my capabilities to myself and others. Competing in Miss America competitions became a coping mechanism for me during those early years. It gave me a focus and a goal to strive towards. I believe this may be the reason why I was able to pull myself out of my depression and despair. I was blessed to participate in Miss America during the age of advocacy. At the time the organization was looking for women who were community-minded and service-oriented. Having diabetes and wishing to change perceptions about the capabilities of people with diabetes made me a perfect fit. As I grew into the role of Miss America, I learned about research and government advocacy. This made me decide to pursue a career in health and to elevate my conversations to include support from governing bodies regarding access to proper healthcare and opportunities for people with diabetes.
4.) What inspired you to stay engaged in diabetes advocacy after you served as Miss America? Why did you choose a career path in public health? What have been your jobs in public health?
After my term as Miss America, I went back to graduate school and engaged in diabetes from a research perspective. I credit the people I met during my Miss America travels for the passion I further developed about the importance of psychosocial wellbeing in diabetes clinical care and research. For 10 years (1999-2009) I worked as an international public speaker, author and television host on dLlife. I had the pleasure of traveling to 12 countries and 47 states speaking about diabetes and working in collaboration with many great diabetes companies. In 2009, I started work on my doctoral degree in public health and began a career in academic research/administration. During this time, I started many diabetes programs and initiatives focused on results from research my team and I conducted. I also had the opportunity to work on the Diabetes Prevention Program (type 2) for the State of Florida. My specialization in public health became social marketing and family systems. This led me to create a bevy of marketing materials on diabetes prevention that were used throughout Florida. I must say, a few times over the years I have considered positions or roles outside of diabetes, but every time I’ve felt a tug at my heart. Every time my gut told me there was still more for me to do in diabetes. Most recently, I was a Senior Director in research at JDRF. I had the privilege of building the first Behavioral Health & Psychology research program at JDRF. It has been such a wonderful ride so far and after 23 years, I can tell you I could have never imagined the career I have been blessed to have. I feel that God orchestrated a plan that is far greater than anything I could have imagined!
5.) Tell us a bit more about your position with JDRF and what you and your team were able to accomplish?
Since being furloughed I polished up my resume and reexamined my skills, goals and next steps. I’ve taken on the position of National Director at HundredX Express Feedback for Good. This entity is a data/consumer insights company. We have a very unique and exciting model that brings a new form of audience engagement and funding to non-profit organizations. HundredX collects consumer insights from networks of people connected to non-profit organizations in an effort to creating value for the non-profits and do good in the world.
6.) Tell us about the diabetes organizations and efforts you’ve been involved with over the last several years and why you’ve chosen to spend your valuable time on their missions.
With 23 years in diabetes, I have had the great fortune of engaging with so many wonderful organizations. I have served on many boards and continue to serve in varying capacities to support organizations that I love. One of those organizations is the PADRE Foundation in California. I met the people who run this organization in 1998 and fell in love. We have been together ever since! I am so grateful that Tandem Diabetes Care continues to support their annual gala event! I’ve loved supporting on stage as emcee. I’ve also been a longtime supporter of the Diabetes Education and Camping Association. There is so much value in camp and community. I love what camps provide to children and families. I’ve also had the privilege of serving on the Board of Directors for both JDRF and ADA. Each organization is making valuable contributions in the diabetes world. We are better off today than we were yesterday because of the great minds and immense passion that every volunteer and staff member brings to our community.
7.) Do you encourage people with diabetes and their caregivers to become engaged with diabetes organizations and peer support communities? Why? How has your engagement made a difference in your life?
We know that people who are engaged with others are happier, healthier and they live longer. Research shows this is universally true. I believe people with diabetes also thrive better in community. For me, this disease changes with every life stage. I find that I need support and guidance through each phase. Connections with others with whom I share the bond of diabetes are part of what keeps me healthy.
8.) How do you suggest people discover opportunities to engage locally, nationally or internationally to connect, participate in and serve the community?
The diabetes community truly has something for everyone! Thankfully, there are many options for people to engage and build community including gender specific organizations, athletic organizations, social events, age-specific community building opportunities, virtual events and more. With so many options available, it takes a little searching to find the right fit. I encourage people to explore. It’s alright if something doesn’t feel like the right fit, there’s always another something to try. Just do what you can to not be isolated.
9.) What has been your biggest glass of lemonade regarding your diabetes to date?
The opportunity to live my life in stark contrast to the one envisioned at diagnosis by my healthcare providers. They told me my life would be boring, predictable, and short. They were certainly wrong!
10.) Please share your words of wisdom to PWD who are inspired to make lemonade from lemons?
If you have faith and grit, you can accomplish anything! These are my secrets to success!
If you’re a person who believes you’ve made lemonade from your diabetes diagnosis, or if you know someone who has, let us know at email@example.com for a chance to be featured.
Author Bio: Hope Warshaw, is a Registered Dietitian and Certified Diabetes Educator. She has spent her career involved in diabetes care and education and has authored several books published by American Diabetes Association (ADA), including Diabetes Meal Planning Made Easy. She was President of the American Association of Diabetes Educators (AADE) in 2016. She actively and passionately promotes the value of peer support to people with diabetes, caregivers and healthcare providers.
Hope Warshaw was compensated by Tandem Diabetes Care for her contribution on this topic. However, she created the content and it is based on her personal knowledge, experiences, and observations.
From time to time, we may pass along: suggestions, tips, or information about other Tandem Insulin Pump user experiences or approaches to the management of diabetes. However, please note individual symptoms, situations, circumstances and results may vary. Please consult your physician or qualified health care provider regarding your condition and appropriate medical treatment. Please read the Important Safety Information linked below before using a Tandem Diabetes Care product.