Every Miss America and every contestant has a unique story and Miss America 1999, Nicole Johnson, is no exception. Nicole has type 1 diabetes and won her crown after being diagnosed … despite being told she should drop out of the competition time and time again.
Nicole, MPH, MA, Executive Director, Bringing Science Home at USF, won her Miss America crown while wearing her insulin pump. She now travels extensively giving motivational speeches and lectures and helps to run a pair of non-profit organizations aimed at supporting those living with diabetes, especially young adults. I think you will find her diagnosis story quite unique.
Q: When were you diagnosed with diabetes?
A: In 1993. I was at a local Tampa Bay area pageant competition and I was very, very sick. I remember during the rehearsals and in between the phases of the competition, lying on the floor in the bathroom because the tile felt cool and I was so nauseous and in such pain but I refused to give up. I was so ill that they needed to take me to the hospital, but I wanted to see what it would be like to be in the competition. And so I would compete and do portions of it. I was named the runner up and immediately after they gave me the trophy, they took me to the hospital.
When I got to the hospital I was told my appendix was going to burst and I had to go into surgery. I was prepped for surgery and then somebody realized how high my blood sugar level was. So, today I still have my appendix. When they realized that my appendix wasn’t going to burst they sent me home. They called my parents back the next day and said, ‘We think she has diabetes.’ It took several days for me to wind up back at the hospital, to be admitted, and to start receiving insulin.
Q: What happened after you were diagnosed?
A: When I was diagnosed, I stayed in the hospital for five days. On that first day, the health team was talking to me about what my future would look like with type 1 diabetes. I was instructed to drop out of college, to change my career plans. I had wanted to be a journalist and I was told that that was impossible. I was told that motherhood would not be a reality for me. It would be too dangerous for me to go through a pregnancy. I was even advised to not compete in pageants again.
I left the dorm, went home and did relatively nothing for two to three months. At that point I realized the lifestyle they described was not going to work out for me. I enrolled back into school and doubled up on the course work, still living at home so we could figure out diabetes.
Q: What was it like when you went back to college?
A: I would drive 3 hours a day going back and forth to the university. Every second of those three hours, my parents were in a panic because of what could happen in the car. I would travel with a cooler of food that my mom and I would prepare the night before. It was a very intense experience with very little flexibility.
I started to realize that the school thing was working out. If I had a low, I could take care of it because I had supplies with me. I realized that I had to move forward because a lack of movement was failure in my mind, and so it became a ‘small step every day’ type of initiative with education, with other life goals. I became very focused on executing my diabetes care and my course work. All of the social elements that make up that experience faded away and I just focused on making it through. I wish I had somebody in those early years that would have helped me round it all out and would have helped me realize if you want to join a sorority, you can. If you want to do collegiate athletics, you can do that and here’s how and here’s your step-by-step guide. That just wasn’t a reality.
Q: How did you get back into pageants?
A: I started to reflect on everything I was told I couldn’t do and I started to mentally plan. I want to try these things. So the next thing I tried was another local pageant. When I entered, it was at the time when they just started focusing on platforms. I decided that my platform was going to be awareness of diabetes and I won the competition. I think that, more than anything, gave me the confidence that I’m not completely damaged as a person. When I won that first competition, it was a huge boost of, ‘I have diabetes and it’s OK.’
Q: Did diabetes play a role in the Miss America pageant?
A: Numerous times throughout the course of those five years, all along the way, people were telling me that I couldn’t do it; that I would never be chosen, I wasn’t good enough, I couldn’t do the job. Every time someone told me I couldn’t, it was like a dagger being stuck in my heart. But also the flipside was, ‘wait a minute, if you say I can’t, then I’m just going to work harder to show you that I do have potential.’
When I made it to the Miss America pageant the next year I had some challenges with low blood sugars because of the stress and excitement – the adrenaline. I also wore my insulin pump throughout the competition with the exception of swimsuit when I disconnected it because everybody thought it was a pager.
And even up until the day of the final competition at Miss America, I had people telling me not to get my hopes up, saying “you’re not perfect”. I would say “we don’t have to be perfect.”
How inspiring is Nicole? For a teenager and young woman to have that kind of resilience is quite admirable, and it’s something we see more and more within the diabetes community. In our next post, we will discuss what Nicole is doing now for young people living with diabetes and how her experience helped to shape the way she’s supporting others going through similar challenges.
All the best,
Disclosure: Nicole Johnson received no compensation for this post. All opinions contained in this post reflect those of the interviewee, and not of Sanofi US, its employees, agencies or affiliates.