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Where does diabetes fit in your life?
  By Nicole Johnson, MA, MPH

In the last few months I have been on a quest to try to maximize and simplify my diabetes management. I have developed new diabetes care relationships, figured out healthcare providers who will email with me, I have worn my glucose sensor a few times, created diabetes spreadsheets, thought about how I communicate about my condition better, even tested some new devices. What I have learned is that there is nothing simple about diabetes. In fact, the mere dream of simplifying my management was just that – a dream. This disease takes a ton of time to manage and I am not sure it ever actually gets easy or routine.

Even while on vacation in July, my friends noted how much time and energy diabetes takes. They commented to each other and then later to me that the disease affects “every decision I made during each and every day.” When I heard that, I was taken aback. I know how much effort goes into my disease, but I had not thought much about how it affects those who watch me.

Then, a few weeks ago, my two year old started pretending a pedometer was her insulin pump. Everyone seems to be touched by my disease. Mostly it is a good thing; sometimes it is not.

It is an interesting thing to think about as we all adapt to changes in routine now that summer is gone. How will diabetes affect those in your school, on the ball field or court, those at the office or those in your home? Does diabetes have a certain place in your life or does is follow you along everywhere you go? These are more philosophical questions. For me, diabetes is a constant companion and I am willing to consider it part of my family. We talk about diabetes openly. We care for diabetes openly. We chastise diabetes openly. This is best for me and my situation. I really feel that diabetes is a community condition. It can’t be cared for in isolation. The disease causes too much disruption in life for it to work in a silo. [Disruption meaning: low blood sugars, high blood sugars, moodiness, irritability, complications, even wearing devices.]

Others, though, feel that diabetes should be dealt with in private. Many test their blood sugar in private. Others don’t talk about how diabetes affects them willingly. Still others do not even disclose they have the condition to friends, coworkers, etc.

I suppose it is a personal decision. However, I would challenge anyone who is hiding the disease to really look at the entire situation. It is not only the person with the physical manifestations of diabetes that is affected. Case in point, my little girl pretending to wear an insulin pump. Those around you are concerned and often confused. I would also ask, “can you be safe dealing with your disease in private, alone or in isolation?” I don’t think that is a safe place to live – physically, emotionally or psychologically. A dangerous low blood sugar in a place where few to no people knew about my condition convinced me of this style of living.

I understand that there are struggles in work situations with disclosure. Although, I also do not understand that. In this age, with the progress we have seen in society, I can’t imagine why people discriminate. I wish the diabetes community would allow themselves to be a strong, solid voice against discrimination and for greater support of those living with the disease. Really, everyone has something. And over 60 million Americans have diabetes or pre-diabetes right now.

As a parent, it infuriates me that children are often made to feel like their diabetes should be hidden. This week, a child told me of how school officials withhold food from her because she has diabetes. What is meant as a safety precaution has negatively affected this child and ostracized her from her classmates. She hates being singled out as different and in her words, “disabled.” It doesn’t have to be this way.

If my child had diabetes, I would fight to the greatest extent possible to make sure she could test her blood sugar when she felt it necessary in school and that she was safe while doing that. I would also work to ensure that she could enjoy meals with other students and that at all times she could live with her diabetes in school without feeling ostracized. I would fight for her safety and her ability to learn that differences should be celebrated, not hidden. That tenacity in management of a condition like diabetes should also be celebrated, since the end result is a longer, healthier, more successful life. And that she is not “disabled”! Isn’t that what we all want children to learn?

So, as we hear politicians talk about change and tolerance, I would hope we would think about our personal situations with this disease. How can we change our reality to make it safer, more secure? How can we become more at peace with our diabetes? How can we promote more tolerance and understanding in society as it relates to those of us with “challenges”? Are we changing our reality or are we contributing to the problem by lack of action?

Those are tough questions. Maybe similar questions should be posed to the candidates vying for elected office. What are they going to do to make life less difficult for those who live with chronic disease? What are they going to do to help end discrimination related to disease? How are they going to stand up for us? I haven’t heard a word about diabetes so far. I am waiting with dollars in hand for that day…for someone to say something about the condition that affects every aspect on my life.

I am sometimes saddened that so much effort goes into the management of my disease. But I am also thankful for the opportunity to live – actually live and learn from the experience.

Diabetes has taught me plenty. Mainly, I know that life is too tough and too short to try to do anything alone. People make all the difference and I want as many people as possible in my life to be a part of my diabetes journey. If they are, I am safer, calmer, more secure, more confident and I am healthier.



Nicole Johnson, MA, MPH, Miss America 1999, is an international diabetes advocate. She travels extensively promoting awareness, prevention, and early detection of the condition she has shared for fifteen years. She has written four books including her autobiography, Living with Diabetes. Nicole serves on numerous advisory boards including the National Institutes of Health (NIH) Council of Public Representatives, the Florida Governor's Diabetes Advisory Council and the Tampa Bay chapters of the American Diabetes Association and the Juvenile Diabetes Research Foundation. She is also a past national board member for the American Diabetes Association. Over the last nine years, Nicole has helped raise approximately $20 million for diabetes research and programs.

Learn more at www.nicolejohnson.com


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