Nicole Johnson, Dr.P.H., M.P.H.
National Director of Mission, JDRF
More than 25 years ago, I was diagnosed with type 1 diabetes (T1D) and I quickly learned the challenges of living with a chronic illness. The need to continually check blood glucose levels, engage in physical activity, and monitor food intake are daily, even hourly, burdens — and the repercussions of too high or too low blood sugar levels can be life-threatening.
After my diagnosis, I resented the changes this disease brought to my life. I struggled with feelings that others with chronic illnesses often share: stress, sadness, frustration, even anger and guilt. Sometimes you are doing everything right and still not getting the outcomes you want. I’ve experienced exhaustion and what I’ve come to know as diabetes burnout.
All aspects of health
Today, I know that living with diabetes takes an emotional toll as much as a physical one. That’s why we need to focus on our mental and emotional health, as well as our physical health. All are connected.
Emotional health must be part of the conversation about effective diabetes management. I tell people with diabetes to step back and be honest about your experiences. Talk about more than just your blood glucose highs and lows. Share your feelings of fear and success, and your thoughts on all of the highs and lows that come with tackling diabetes every day.
We’ve come so far in terms of understanding T1D, and for that I am grateful. In 1998, I wore an insulin pump throughout the Miss America competition and became the first Miss America with T1D.
At events, people often were confused about my diabetes. My pump was mistaken for a pager and many people were afraid they would “catch diabetes” from me. It was clear there was a lot of work to be done to educate people about diabetes.
Living and thriving
I continue to help people better understand T1D and to live well with the disease. Organizations like JDRF are confronting the burdens associated with diabetes management. Through my work with JDRF, I conduct research focused on behavioral health, quality of life, and family dynamics for those in the T1D community.
We still need to train more healthcare professionals and diabetes educators who can build trust with patients. We need more psychologists to work closely with diabetes specialists and primary care physicians.
I tell people with T1D, especially young people, that it’s OK to not always be happy, but it’s not OK to refuse to seek help. I encourage people with diabetes to develop relationships, build internal gratitude, and see the beauty in everyday experiences.
The causes of T1D are not entirely understood and unfortunately there is nothing people can do to prevent T1D, a disease in which the body’s immune system mistakenly destroys the insulin-producing cells in the pancreas.
Serious complications can result without proper management of the disease. This is true for people like me with T1D and people like my dad who have Type 2 diabetes, a metabolic disorder. Regardless of which kind of diabetes you have, the day-to-day focus on exercise, nutrition, and a healthy blood glucose range can be exhausting.
Yet we must not let the medical concerns overwhelm our ability to maintain our emotional wellness. That’s essential to helping people stay healthy until we find a cure.
Nicole Johnson, Dr.P.H., M.P.H., National Director of Mission, JDRF, [email protected]