Nicole Johnson, DrPH, MPH, MA has worked professionally in diabetes for over 17 years and has lived with Type 1 diabetes since 1993. She is most well known for her time as Miss America 1999. In recent years, Nicole has gained a reputation for her engagement in diabetes research focused on quality of life, psychosocial issues, and family dynamics in diabetes. At the University of South Florida, Nicole serves as the Executive Director of Bringing Science Home, a $6 million diabetes research program that focuses on those very topics.
Nicole is also the Chairman of the Diabetes Empowerment Foundation, an organization focused on adults with Type 1 diabetes. Examples of the foundation’s work include the programs Nicole created Students With Diabetes, Young Adults With Diabetes and Diabetes Partners.
Over the years, Nicole has served on many diabetes advisory boards including the JDRF International Board, the American Diabetes Association National Board, the Florida Governor’s Diabetes Advisory Council and the National Institutes of Health Council of Public Representatives. Since 1999, Nicole has helped raise more than $27 million for diabetes research and programs
In her journalism career, Nicole won a Telly Award for her work on dLife. Her love of communication lead her to be a columnist for numerous diabetes magazines over the years, as well as the author of 7 books related to diabetes. Her most recent book is Young Adult Type 1 Diabetes Realities.
Alissa: When did you start competing in pageants and what kind of training did it require?
Nicole: When I was younger my parents entered me into a pageant with the hopes of breaking me out of my shyness shell. After my first one as a pre-teen, I didn’t enter another until my senior year in high school. It was then that I entered the Miss America program because it offered scholarship opportunities. (She didn’t win that first year.)
Alissa: Can you tell me a little bit about your early years leading up to your type 1 diabetes?
Nicole: I was a typical kid who loved to play outside, riding my bike. I wasn’t particularly athletic but I did run track. Because I was so tall I did well at hurdles and high jump. I loved music and was always active in my church, which was a big cornerstone for me.
Alissa: So many people are misdiagnosed and one of the reasons I really appreciate you speaking to me today is because this is what I often hear of misdiagnoses. How were you diagnosed? What were your signs and symptoms? I believe you were originally misdiagnosed. Am I correct?
Nicole: I was 19 and in college when I was diagnosed. I was sick for a really long time and I'm sure my blood sugar was high for a while as well. I was misdiagnosed several times. I had lost so much weight from being sick that I was initially sent to see a psychologist because many people thought I had an eating disorder. Then, I was treated for various strains of the flu. Finally, I was correctly diagnosed as I was being prepped for surgery to remove my appendix – which they were taking because that too was suspected as the cause of my illness.
Alissa: You had an appendix surgery without it being appendicitis?
Nicole: Almost. They didn't take it out because they realized my glucose levels were so high. The surgery was cancelled because I didn’t have appendicitis. I was misdiagnosed because I had immense abdominal pain with flu like symptoms. Finally someone put it all together, the weight loss plus vomiting and constant thirst, I had Type 1 diabetes. I am the only person in my family with T1D.
Alissa: How did you handle your type 1 diabetes emotionally and who was your support system?
Nicole: Because I was a young adult, it was an awkward time. I was in that process of separating from my parents and establishing my independence. My family was very supportive of me but in a very different way than when people are diagnosed when they're a teen or maybe later into adulthood.
Alissa: Were you depressed at all from it or did it change your emotions?
Nicole: I was sent into a downward spiral emotionally. The healthcare professionals were advising that I needed to do this on my own but no one realizes that when you are diagnosed with a disease you automatically feel isolated and depressed. When I was diagnosed, I was immediately given a list of all the things I couldn’t do. Everything seemed so negative. I followed the advice I received. I quit school, shelved all my dreams and tried to create a new way of living. It [the advice] was so extreme. I was told to NEVER enter in a competition like the Miss America program because I wouldn’t be able to handle the stress and that having children was no longer a reality for me because of my diabetes.
Miss America 1999, Nicole Johnson with her daughter
Alissa: How long do you say emotionally it took you before you felt like you were in a good place again?
Nicole: Probably a year or two. After a few months I started trying to live again, but the process of dealing with the grief and shock took me a while.
Alissa: When did you start preparing to compete for Miss America after your initial diagnosis?
Nicole: About six months after being diagnosed, I decided that I needed to start trying things. The Miss America program was the impetus for me being able to have a positive outlook. It gave me a goal, a sense of purpose. It didn't matter if I won or if I lost. (And I lost a lot of times.) Getting on a stage with a disease was the push I needed to turn my life around.
Alissa: How did you find a doctor and a medical team to help support you?
Nicole: The old fashioned way – looking in the phone book and talking to friends was how I finally found someone that was right for me.
Alissa: Was it hard to maintain well regulated blood sugars, especially when you were competing with the restricted diet?
Nicole: Yes, it was incredibly hard. This was more than 20 years ago. Continuous Glucose Monitoring (CGM) sensors weren’t available nor were Insulin pumps common. The first five years I gave myself injections. Thankfully, I never fell into any traps of dia-bulimia or anorexia but, I did become a really diligent high cardio exerciser when I was preparing for Miss America.
Alissa: What was your diet like and did you see a nutritionist?
Nicole: No, I didn't see a nutritionist. My diet was very basic. Including a lot of steamed vegetables and some chicken. For breakfast, I would eat Fiber One. Lunch would be some kind of salad or protein and dinner was steamed vegetables and chicken.
Alissa: Did the stress of competing impact on your blood sugars?
Nicole: Yes it did. Being able to compete for five years before the Miss America program allowed me to learn a lot about mind control. I would intentionally decelerate my emotions and try not to be excited or anxious about things. I would go through mental exercises to keep myself calm. When a person gets excited, the adrenaline can hit the blood sugar really fast. I would do a lot of techniques similar to yoga to help control my breathing.
Alissa: You were very well known as the first Miss America who competed with diabetes and an insulin pump. I'm curious to know what made you decide to wear an insulin pump on stage and how did you feel?
Nicole: The year before Miss America I was competing at the state level when I was found unconscious due to low blood sugar. That was my wake up call. I decided from that moment on to not hide anything about my diabetes. One week later I was on the pump and vowed to not only wear it but use every tool available to maintain my blood sugar.
Alissa: What kind of impact do you feel it had on the general public and the diabetic community or non-diabetic community? By any chance, do you feel that, to some extent, a pump created a possibility of you accelerating your win?
Nicole: I wore the pump underneath my clothing. I didn't necessarily advertise that I was wearing it, but I did tell the judges that I wear the pump to stay alive. I literally said during the interview “If you have a problem with the fact that I wear a medical device, don't pick me because I'm never going to hide it. It's under my jacket. It's clipped to my waistband. It is my lifeline."
I don’t think the pump secured my win, but I do think my win had a bit to do with the way I was fueled with passion to speak out about diabetes. It was infectious and unusual at that time.
Alissa: Are you currently still on an insulin pump?
Nicole: Yes, have been now for almost 20 years.
Alissa: Are you currently on a Continuous Glucose Monitoring System (CGM)?
Nicole: Yes, I wear a Dexcom. Have been wearing it since the first one came out!
Alissa: Since you're on a CGM, what advice would you give and why do you feel it's important, especially as an athlete or a competitor?
Nicole: My advice is to wear one if you can. The reason I say “if you can” is that I recognize athletes may have challenges in physically keeping the device on. I get a severe skin reaction to my CGM, but I still wear it. It is my peace of mind and assurance that I can accurately control my blood sugar. I also recommend that people engage in the online community to seek guidance on everyday issues that we all experience – whether you are an athlete or not.
Alissa: What do you think you've benefited the most from wearing a Dexcom?
Nicole: There is great value in being able to monitor your blood sugar because it helps influence behavior. For example, I will know if my blood sugar spiked because of what I ate or not. There is an immediate connection between the cause and effect in my behavior. It's a great non-verbal, non-judgmental tool that guides me.
Alissa: Tell me about your higher education as well as your career highlights.
Nicole: I have a master’s degrees and a doctorate in public health. Currently, I run a research program that focuses on how those who have diabetes quantify their quality of life. Their feedback helps us develop programs, interventions and solutions all geared toward improving daily living. But … the greatest thing about it all is being a parent and sharing all of this with my child. My daughter sees the importance of science. In fact, this week she and I gave blood to help with diabetes research studies.
Alissa: How does your daughter handle your title and success and is she interested in competing in pageants?
Nicole: She's very funny about it, using it to her advantage when it's convenient. If she wants to show off in front of the class, then mom needs to bring the crown in. And I guess like every little girl, she wants to be like her mom so she talks about being in pageants when she is older. I explain that achieving the job of Miss America is a lot of hard work, but if she wants to do it then I am behind her. She really needs to live her own life, following whatever makes her excited and happy – which is why we do not participate in kid pageants. She does speech competition and piano recitals – that is what I feel is appropriate for her right now. You will never find us at a child pageant.
Alissa: What kind of message do you want to share as a role model to other type 1 diabetics and together, how can we make a positive impact on others?
Nicole: We need to be inspirational, teaching the younger generation that diabetes is not a stumbling block. They need to go forward and chase their dreams. We need to be mentors.
Alissa: Can you tell me a little bit more about the science of your company that you work for?
Nicole: I initiated a program called “Students with Diabetes,” which focuses on young people ages 18-35. This is the time of your life when everything is ‘new’ whether it is college or first job. I remember what it was like to be a young adult diagnosed with diabetes. I was in a dark hole of depression, feeling so lonely and helpless. This program addresses all of those vulnerabilities and isolation associated with being diagnosed at a young age.
Alissa: What charitable organization do you support and how can people contribute? Is there an online website?
Nicole: The programs that I've created have moved into a foundation, which is called the Diabetes Empowerment Foundation and the website is diabetesempowerment.org. It's everything from the students that I talked about to programs for partners of people who have type 1. In 2016, we will be rolling out a program with an emphasis on moms who have diabetes. We'd love any support from dollars to volunteerism.
Alissa: Thank you very much. You were so informative and I know how busy you are and I really appreciate all of your time. Together, I hope we can make a difference!
Nicole: Wonderful. I hope so too! Thank you.