Following my recent article about why I lied to my parents about my diabetes, many parents reached out to my mother and me to ask how I turned things around. I thought that I would take this opportunity to address some of the different things my parents, my medical team, and I did to help me recover from diabetes burnout and take responsibility for my diabetes.
I found an endocrinologist who works well with me
Throughout my burnout years, I feared going to the endocrinologist. I dreaded the lectures, yelling and disappointment they entailed. Almost every endo appointment I had throughout my teen years ended in tears. When I was 18, I finally said to my mom: I need a different endocrinologist. Together, we made the decision that I was ready for an adult endo (mainly, I was over clowns greeting me in the waiting room at the pediatric endo). The switch was one of the best decisions I ever made. I found a new endo that I felt I could be honest with. He didn’t get mad at me about anything, and provided insightful advice for how to turn myself around. He gave me a realistic plan with small steps. Today, we continue to work as a team to manage my care.
I viewed blood sugars as just what they are: information and numbers.
It took me a long time to realize how the fear of disappointing my parents led me to lie. There were times when I would check my blood sugar, see a high or low number, and lie about the result simply because I didn’t want to upset them. Once we all made an agreement that no one would get upset about what the actual number was and would see it as information we could work with, it was easier for me to be honest. I even was able to be honest about not checking at all, or missing an insulin dose. Being able to be honest without judgement or reactions allowed me to reach out when I needed help.
I set realistic goals.
There was a time in my burnout phase when my doctor set a goal for me to check my blood sugar twice a day – when I woke up and before I went to bed. I was free to check whenever I wanted to during the day, of course, but the only two checks I had to commit to were the first and last of the day. My doctor knew that I was continuing to get burned out when I couldn’t get myself to check 8 times a day. He told me that baby steps were necessary when coming out of burnout. It worked. Having a lower expectation removed much of the chance of “failure,” and I responded to that by doing more.
My parents learned not use punishment or bribery as a tactic.
I remember when my mom told me that if I could check five times a day for a whole week, she would buy me a “prize”. I tried and tried but ended up getting flustered and overwhelmed. Ultimately, I ended up lying about checking five times a day and did not get the prize, which made me feel even worse about myself.
Punishment for diabetes related problems also didn’t work for me. Getting punished for forgetting to check or take insulin only made me resent diabetes more. Diabetes was already tough enough, and how guilty I felt all the time during my burnout was punishment enough.
Patience was key.
It took me a very long time after my burnout began to start seeing my diabetes care as a habit again. Frustration was inevitable, but taking each day as it came made diabetes easier to manage. I also think a big part of the reason I began to take better care of myself is: I grew up. I wanted to do well in my classes and succeed at my internships and jobs. That inspired me to put in the extra effort. When I was 14 and not taking care of myself, the only thing I had to lose was getting a bad grade on homework, but when I was older, there was much more on the line. As the years pass, my diabetes becomes more and more of a priority to me.
Lauren Stanford was diagnosed with Type 1 diabetes in 1997 at the age of six. She became an advocate for diabetes research and awareness as a young child, testifying before Congress twice, serving as ChairKid of JDRF’s Children’s Congress and speaking as part of the 2008 Democratic National Convention. She was awarded the Prudential Spirit of Community Award for being the top school aged volunteer in America. She was also a Clara Barton Camper for 11 years. But more importantly, she would say, she has and still does live her life well despite diabetes. “Sure, there are things I must do because of diabetes, but there is nothing I cannot do because of it.” A graduate of George Mason University, Lauren lives in Washington DC where she helps health advocacy groups build and maintain advocacy programs.